When doctors found three cysts growing on my spinal nerve roots, by my sacrum, they said not to worry as there was nothing they could do for them.  So, I thought nothing of them; yet, I was having very sharp sciatic pain that traveled down my legs.  Four neurosurgeons later, Dr. Kabins in las Vegas, NV stated my tailbone was severely shattered and I needed to have surgery.  I was scheduled for September 2008.  I spent five and one-half hours debating on whether or not this surgery would help, thinking I was going to be fine.

My pain and walking abilities became worse, so I decided to look back at my MRI from 2007.  I noticed it read Tarlov cysts, so I googled the term and found descriptions of similar symptoms I too was suffering from.  I requested another MRI and received my report two days later, which showed my cysts had grown from 15 mm to 20 mm (about 1 inch in size).

Since that time, I have learned these cysts erode your nerves and bone, and there are only three neurosurgeons in the United States that will do surgery to slow the progression of this disease. I had to file for SSI (Social Security Income) due to obvious reasons.

I feel like a prisoner in my own body.  I awake each morning with muscle weakness, shortness of breath and pain. At what seems like forever ago, I was a very outgoing person; now, I can only handle sitting for about five minutes, and I have intermittent periods of having to either stand or lay down. And where I used to be able to jump and run, I walk with a cane or arm crutches.

I recently learned from the Dr. Frank Feigenbaum from Dallas, TX, I would need two surgeries as my pelvic area is full of them. However, he is concerned about the Tarlov cysts around my sacrum bone as they have started to erode the bone away along with the nerves in my spine. The surgery will require four to five hours, a hospital stay of at least four days, and an extra eight days in Dallas as well as 18 months to heal due to the slow the progression of this disease.

I can no longer work, as I am just deteriorating.  So, in the meantime, I am eagerly waiting to get approved for SSDI and continue to have Hope.

Thanks for listening.

153 thoughts on “Deteriorating from My Disease: One Young Woman’s Painful Life with Tarlov Cysts”

  1. Debra says:

    How many people are currently participating in this group?

  2. Looking for some GOOD Post-Op news by people that have this disease (like myself).
    It would be nice and even an MORAL obligation for those that have had positive result after surgery who are close to having their old lives back, to post their Post-Op stories fo those of us that are still deciding what !!!\
    THANKS FOR LISTENING!

  3. margaret sorenson says:

    are Tarlov cyst sufferers any close to be recognized by the medical community or do we continue to suffer unrecognized?

  4. Lise Butler-Bowes says:

    Hello,I am so sorry to hear of the young woman’s struggle with Tarlov Cysts.I live in Canada and am trying to find a neurosurgeon who may be knowledgeable about Tarlovs as I had an MRI that reported an incidental finding of a perineural cyst found on my S3 nerve root.Living with PN has been very painful and I need to know if there is a connection between this and a possibility of Tarlov cysts disease.Many Thanks,Lise.

  5. Stacey says:

    Hi that is my story I still am waiting to get my ssdi my update I’m worse sometimes I have to crawl because of the pain & inflammation in my hip. No matter what I have to have the surgery. For information about this disease go to Tarlov cyst disease foundation and on Facebook there’s forum group of people who have the disease and some have had the surgery you can ask how surgery went. Thanks for reading hope it helps.

  6. Lisa says:

    Hi Stacey,
    I’m thinking about you I’m Western Australia I am waiting on the surgery on 14 April 2014
    With Dr Feuibeum he is a wonderful incredible man if you would like to get in touch my number
    Is 0488772319 I will be happy to chat as company as I’m in debilitating pain everyday nite
    I have 6 cysts on my sacram eroding my bone 3 both sides I would love to hear from you
    Your always in my thoughts Lisa xxxx

  7. zandra wiid says:

    I was daignosed having 2 Tarlov cysts on the S2 level bilateraly. My twin sister was also diagnosed at the same time. We had severe pain and after an MRi scan and googling the term, Tarlov Cysts, I opted to be referred to a neuro surgeon. My sister and I both went for surgery. we stayed in hospital for three days and then recovered at home. Now we can both sit again and I even started walking and swimming and gardening! I experience some pain , especially on cold rainy days, but the surgeon explained that it will be tender for quite some time as the bone was eroded and he had to work on that bone. It is a different pain altogether and I am so thankful. My message is not to lose hope and go for surgery immediately. Our neuro surgeon and the hospital staff in Durban was wonderful!

  8. Regina Fenster says:

    11 years ago I slipped and fell on my tailbone. The pain was increasing day after day. The burning, tingling, numbness and stabbing pain going from my lower back and radiating down my right leg. MRI indicated an “incidental finding” of a Tarlov Cyst. I also fractured my S! &S2. Had surgery for the fracture with 4 screws. Still after two weeks in hospital was unable to put my right foot on the ground and the pain was like nothing I ever experienced. Was taken back into surgery because they indicated maybe they should double the amount of screws and also add bars connecting. Still unable to walk I came home after a week and my husband was my nurse. We asked and asked and asked “Is there any way possible that this could be the Tarlov Cyst?” The neurosurgeon dismissed the idea and said he was positive that was not the case. Another surgery followed two days later,,Spinal Fluid Leakage. When I sat up to a certain point I became dizzy and disorientated. Now that was fixed. Still having radiating pain and unable to care for myself. He said Im sorry this seems to be out of my realm and referred me to the top neurosurgeon at Cedars Sinai. We once again expressed our concern about the Tarlov Cyst and it was quickly dismissed. They took one x-ray with me touching my toes and found two of the screws had broken. Another surgery to remove all of the previous hardware and replace. Due to my instability and radiating pain I was bumping into things and very unstable I did all the physical therapy inside the pool and out. Due to my instability I fractured my cervical There is another surgery. Asked again, why am I unstable and still having radiating pain? Assured us it had nothing to do with the Cyst. Then my hip started dislocating not once but many times a week. Torn my lathium and my socket could not stay in place. We were hopeful that maybe this hip thing was the reason for all the burning and radiating pain. Finally we thought. After my hip surgery two weeks later as I was in physical therapy the stabbing pain began again. After seeing several pain management doctors (5) indicating I do not want drugs I want to be fixed. What do I do? Went to UCLA and USC and another Beverly Hills top neurosurgeon to see if they would remove the cyct. Everyone of them said it was not the cyst and my only resort would be the pain implant. I went through the psychological evaluation, the insurance approved and the trial date was set. My husband at this time is thinking Im crazy. If all of these top neurosurgeons say its NOT the cyst then its not the cyst. So then I was told to seek psychological counseling because I have been so sick for so many years my mind can make my body think its in pain.. I went on the internet researched the heck out of it and flew down to see Dr. Feigenbaum for a consultation. It took me 8 months to get in but this was my “Hail Mary” I brought all my records, films, operative reports for the last 11 yrs. He pulled them up on his computer and said “I’m sorry, you do not have a Tarlov Cyst” You have a Giant Meningeal Diverticulitis Cyst that is eroding your sacrum. From my first MRI to my last one the cyst had doubled. My husband and I made arrangements and flew to Texas for a week. I returned home yesterday and I feel like I finally have my life back. I still have the burning, numbness and tingling in my leg but the constant stabbing debilitating pain is gone. My nerves many heal over time and some of them may not. The take away…i know my body and whats real. All those over the years who think I was mind f-ing myself into debilitating pain need a reality check and to get off there high horse and say” Let me look into this, its not something Im familiar with” There ignorance and dismissal of these cysts took away 11 yrs. of my life. I missed alot of time and activities with my kids. Im turning 45 and have not felt this great in over a decade.

  9. Pam says:

    Hello, I have Tarlov Cyst Disease. I suffered since 2009 with horrible back and leg pain, that eventually also affected my abdomen. Last August 2013 I had surgery with Dr Frank Feigenbaum and it was the right decision for me. My abdomen pain is completely gone, my leg pain is almost completely gone, my back pain is much better. I was pretty much home bound. I can now take walks outside without horrible pain. I can sit more comfortably, I don’t need a cane to walk. If you have this disease find a dr who believes you before it ruins your life! I wish I would have had the surgery sooner!! I’m 8 months out and my life is so much better! I’m still recovering and know I will get even better.
    Be careful if you chose to join some of the support groups on Facebook, a lot of people are against surgery and are very negative. If there’s a surgery that can get you your life back isn’t it worth a try? I’m so glad I did it!! Good luck everyone.
    Pam

  10. Jerry says:

    hi Pam nice to hear you are doing good ,just found yesterday I have this disease,not good news..
    your post you mention face book ,I TRIED JOINING AND GOT NO WHERE ,MY BE YOU COULD GIVE
    ME SOME POINTERS….THANKS JERRY

  11. Stephen says:

    I have two large tarlov cysts at S2 level bilateral like you it was said that they are nothing but I feel this is an excuse because being rare they don’t do much in the line of research , here in the uk research started in 2008 , I had surgery to try and remove them but it failed ,when I mean surgery I mean cutting frm mid back to coccyx and knocking a hole through the sacrum , I now have been left with worse symtoms than before by far ,I walked in to hospital but have spent the rest of my life in a wheelchair as nerves were cut . The cutting of nerves I feel was through the de roofing as nerves can be in the cyst wall , so before going for surgery be sure even if they claim to be God think as it can really mess up the rest of your life. Know the surgeon won’t touch me or even see me as they don’t like failure , I have lost so much faith in the health profession that I question everything and through the nine years I’ve had this have learned to speak to them on their medical terms this worries them as they know then you have a brain and are not just a piece of meat to be experimented on .
    Take heed there are good surgeons out there but I feel technology has to catch up first through research .
    I hope you all with Tarlovs find help but do your homework as it can be both painful and heart breaking to lose more than you already had

  12. Kimberlyn mallari says:

    I am a nurse currently working here in saudi, and i am also a runner, but unfortunately. Last june 8 I started suffering from severe back pain i can not even reach my knee, and even im walking its painful, i consulted a neurologist last week, and undegone MRI showed perineural cyst in my S1 , im on the third week of conservative treatment and still no improvement, i am thinking to have the surgery, but Im so afraid, because i have red some articles and statement from the people with the same problem with me and most of them became more worst, and i am only 23 years old

  13. Kara says:

    I found out last year, 2013, that I have a tarlov cyst on my S2. It’s 21 by 25. I have no idea what those numbers mean. I’ve had such horrible pain in my lower back and in my neck and shoulders too. I have horrible bladder issues. My pee burns constantly and I lose control in the weirdest of places, like my lawyers office. I can barely feel my own touch on part of my but. I too was initially told that the cyst doesn’t cause symptoms. I am now going to a new neurologist and hope to find out soon how many problems this thing is really causing. Reading your stuff Stacey, scares me that my life will slowly go your way. I truly hope that somehow you find relief from the pain and your life will get better. God bless.

  14. Doug says:

    Hello

    I am from Canada as well. Theyre are some doctors in my community who believe and some who are very against diagnosing these cysts. I have DDD, Tarlov Cyst in my thoracic spine, facet syndrome all over, spinal stenosis in my lumbar spine and to top it off severe arthritis in my hips. I have been in a wheelchair now for20 months and still no MRI of my sacrum. There are no surgeons in Canada performing the surgery for the cysts right now. If I was you I would go to Reta Honey’s website tarlovcyst.org and fill out the questionnaire.

  15. Changed Person says:

    For most of my life, I have traveled and less than 2 years ago I was climbing a mountain. Now, a walk around the block can feel like a marathon. I stay most days now. I was adjusted by a chiropractor and it went very wrong. By the next day, my neck locked and my face swelled. My headache made a migraine feel like a mosquito bite. Now, I have tarlov cysts in the neck, middle back, and sacral area.It was two days before my bone was put back and it was too late. The doctors don’t know how to help and become silent because it was another Dr. and they don’t know what to say.I too was told in the beginning that they don’t cause symptoms. Now, some are starting to wonder. I have bowel problems, bladder and now pelvic prolapse. This was discovered after getting multiple UTIs. I have never had children before. My husband and I got pregnant and then I got yet another UTI and I miscarried.Now, my nerve pain is getting worse. The ringing in the ears is constant, sleep apnea, choking, nerve pain in arms and legs, limbs feeling heavy, and now it feels harder to breathe at times. I wonder how much worse this will get. All of this in a year’s time. I will consult Dr. F, but I am also trying to heal the spinal column. I see surgery as a last resort. We look normal from the outside, but we are suffering. Doctor’s need to learn more about this and understand that it can destroy the quality of life. I have always been positive and now I have to really practice that. I wonder what the future looks like.

  16. Vesela says:

    Hallo Zandra, hallo everybody 🙂
    I was diagnosed having many small Tarlov cyst on the S2 level.
    The biggest is 10mm.
    I have back pain and sciatica.
    I am really frightened.
    Can you tell me a bit more about your surgery?
    Regards,
    Vesela

  17. Lisa says:

    Hi Stephen
    Was devastated to read your story and so sorry that you have had such a terrible outcome.
    Like you I am based in the UK – where did you have surgery?
    My MRI scan has just shown up Tarlov cyst at S2 and I’m REALLY scared as I have horrible back and abdominal symptoms that make me bed-ridden so something needs to be done to resolve problem.
    Would really appreciate your advice – am sick with worry and pain.
    Lisa

  18. Ann says:

    My 15 year old daughter was diagnosed when she was 14 with tarlov cyst disease. She is having problems with her bladder control, stomach & abdominal pain back pain, & now she can barley stand or sit for more than 15 minutes.
    Her tarlov is very large & in her sacrum. Her tailbone is pointed backward & she experiences severe pressure in her head at times and I’m seeing her get worse by the day now. She use to be so active & now she can hardly get through the day at school & has to stay home often. I keep researching about the disease but it seems 15 is very young for this and I’m trying to find out any info there is!
    It does help reading all of your posts & if anyone has any advice of anything to share I would really appreciate!

  19. Michele says:

    I am wondering more about this disease

  20. Barb Abbott says:

    I too have tarlov cyst, the symtoms started in 2000. When I finally went to a nerologist he just treated me like I was I fraud and sent me home. I managed, until I have a boating accident where a large wave lifted me up and I landed hard on the metal seat. My family Dr, did no xrays no ct scan and sent me home again. My legs were leg and severe pain from L4 to sacrum. Finally after seeing Dr. and the pain clinic where I was injected epidurally the Dr. also tested my neurological symtoms, then ordered a MRI. I have a 3.5cm cyst on S1 and several around my sacrum. That was 2010 and only pain pill are ordered and now I have lable of an addict. With this blind predjudice I have been left. The nero-surgeon in my home town said “no-one will touch you”. The pain in my legs is a night mare. I used to do so much before this happen. What can I do now?

  21. Pam says:

    Hi Jerry I just got this message today, dec4! Google dr frank Feigenbaum and the Tarlov Institute. I finally had my year follow up MRI today! Insurance grief! My insurance did pay for the entire surgery, I live in Mi and flew to Texas. Priority Health ppo. I still have pain and limitations but I’m so much better! So sorry this took so long to get to me and then you! Hope you’re ok, it’s a very painful disease.

  22. Pam says:

    Marianne, I have surgerynaug 21, 2013 and would do it again, much better, still have pain and limitations but so much better, sr Frank Feigenbaum in Texas USA.

  23. Pam says:

    Marianne, I have surgerynaug 21, 2013 and would do it again, much better, still have pain and limitations but so much better, sr Frank Feigenbaum in Texas USA.

  24. Alison says:

    Call Dr. Frank Feigenbaum’s office in Dallas,TX
    214-351-8450
    He is one of the only Doctors in the world who will do the surgery required for Tarlov Cysts. It’s a long process, so start right away!!

  25. Carol says:

    I just had tarlov cyst surgery Nov. 5, 2014. I am about 5 weeks out and feel great. Mine was a large cyst in my cervical spine and I was loosing the use of my right arm.I was in an auto accident 20 monthsago….probably the cause of it. Dr Feigenbaum is the person to go to for these cysts. He has a really good and informative website. I had great results…..good luck to you.

    . I have many of these
    cysts but one was symptomatic and Dr Frank Feigenbaum in Dallas Texas repaired it. We live out of state and stayed in Dallas 2 weeks. I plan to return tl work

  26. Carol says:

    I plan to return to work in 2 weeks…without pain

  27. Mary w says:

    Hi anyone who will listen.have 3 tarlov cysts. In desperate pain. One doctor says there not the cause of my pain other doctor says that they are .all of them are in my owner lumber spine. Have had to give up work, can no longer drive, have problems with my bladder and bowel, have to be assisted up the stairs that’s even if I can get up of the couch. I live in constant pain every day.i can no longer do the things I loved to do.a simple walk is an ordeal,putting on my own socks is sometimes even an ordeal.i have lost my life as I knew it and it’s brutal. Can anyone help or guide me on what or where to go from this. Help. Anyone please mw

  28. Pam says:

    Mary call Dr Frank Feigenbaum in Texas! Google him and you will see that he is the dr who can help you. If you can fly there for an appointment it speeds things up. I had surgery for 3 tc’s in sacrum August of 2013. I still have pain but it’s so much better. So sorry and I know how you feel. Please call him!!

  29. Kathy says:

    I also suffer from Tarlov Custs 3 to be exact. Just as everyone hear has expressed their pain and familiar description of of affects due to these Cysts. I am a patient of Dr. Frank Frigenbaum. I will be having surgery to remove the large cysts that sit on my L5 S2 sacrum. I have become very aware of my risks, but my only other option is paralysis. I do want to share I am having fear, but know in my heart, this is a chance to at least take some of the struggles I endure on a daily basis. My surgery is scheduled for Jan. 28th less than 2 weeks away. I will keep you posted on my recovery process. If any of you would like to contact me directly, please respond
    I welcome any questions or communications of my journey. Please be sending prayers, good vibes or whatever your belief system is. As, this is a huge step I am getting ready to endure.

  30. Stacy says:

    After 2 falls right on my tailbone on a slippery steep ice-covered driveway, the pain started. I had bouts of sciatica during pregnancy, but this was different. It was constant, more painful and other symptoms surfaces as well. I changed Neurologists and the new one ordered my first MRI on the spine. He called me a few days later and asked me to come to his office to talk about the results. He informed me that I had a Tarlov Cyst in the S2/S3 area of my sacrum. He cautioned me about doing any research on the web about it – he said it would frighten me by what I read. He also said that he’d always heard about these in medical school, but I was his very first case of actually seeing one in a patient. He referred me to a Neurosurgeon. Well, not only wouldn’t this referred Neurosurgeon see me; neither would 4 others that I tried to get into to see or just have them consult with me. When they found out what it was about, they refused to even see me. I turned to Dr. Feigenbaum. I traveled to Kansas City to see him in early 2012 and then scheduled my surgery for October 2012. I had my surgery in Dallas, Texas in October 2012. It went well – although I darn near walked out of the hospital lobby out of fear of the potential wrong doings that could result. My surgery went well and after 4 days in the hospital and 8 total days in the Dallas area, I was cleared to return home. I had a long fight ahead of me with my insurance company to cover the costs. I just appealed and showed the appeal board my surgery report about the intricacies of the surgery to remove the cyst, careful not to damage nerves and put a plate over my severely degraded tailbone area. My 3-month post-op MRI showed swelling (to be expected) and my recovery was slow. I was very careful to follow the doctor’s orders strictly. My 1-year post-op MRI showed a recurring Tarlov Cyst measuring 7x4x4mm. When Dr. Feigenbaum called me, he mentioned nothing about it. I just had my 2-year post-op MRI done. It shows that this same cyst has grown to be 15x3x3mm. I sent everything off to Dr. Feigenbaum as you are instructed to do. His nurse phoned me the other day to say the Dr. looked and everything appears great. I said, “Really, what about the Tarlov Cyst that was discovered in the last 2 MRIs and has more than doubled in size from the previous MRI?” She seemed startled and had me send in the Radiologist’s readings/findings to have Dr. Feigenbaum take another look. So, here I sit and wait again. I have started having symptoms again for the past 15-18 months, so I wasn’t necessarily surprised to hear that I had a recurring one – although I have been extremely disappointed. I believe in Dr. Feigenbaum, but I certainly hope he is not like so many other Neurosurgeons who have a difficult time admitting their work didn’t last and/or failed.

  31. Hannah says:

    Hi, I am a 24 year old female who was FINALLY diagnosed with symptomatic Tarlov cysts in December, 2014. Apparently no doctor in Australia will touch me due to the complications of the surgery. My pain is the headaches! I have low pressure in my brain due to the tarlov cysts chronic leak. Has anyone else got the same symptoms? I have two cysts, one 5cm and one 4 cm. Its hell trying to work full time with a constant migraine and no one understanding why as a 24 year old I cant do what my friends can do.

  32. karen says:

    not everyone can afford to travel to this doctor, I being one of them. I will let no doctor touch me but him, so I am left to suffer. One little nick by an inexperienced surgeon could mean paralysis for life. So happy for all of you that have been able to see this good doctor. I will keep you all in my prayers.

  33. Daryl Ann Gordon says:

    Did it work?. I have 5

  34. Daryl Ann Gordon says:

    Did it work?. I have 5

  35. Maureen s says:

    Yes I have the headaches too. I have tried many remedies throughout the years, both perscription and over the counter. I find Fiocet works best and is very reasonable priced, I hope you find something g that works for you.

  36. Maureen s says:

    How are you? I hope well or at least better then pre surgery Sincerely . M

  37. Maureen s says:

    Does any of your doctors guide you through your pain or prescribe Medici ES or stretching exercises to open up the joint spaces? M

  38. Maureen s says:

    My heart goes out to you and your daughter. I
    have this disease but I am so much older . I take Lyrica for the pain and it helps me. Also a pain pill when it is bad Fiocet helps if you get the pressure headaches. Lastly I take cymalta for the blues caused by pain and it helps with pain. I discourage a young girl from an operation if medicine and Pilates can help? Pilates can lengthen the spine and ahelp if it is on the machines not mat work.

  39. Lynda Rex says:

    Hi all!
    I have Had 1 S1 Cyst removed in 2004.
    Then in 2013 It was back but this time I had 4 cysts 1 each on S1, S2,
    S3 & S3. My 1st cyst happened when I was 40Yrs old. Now I’m older pain worse. Had my surgery in Dec 2013,
    With Dr. Feigenbaum in Dallas, TX.
    Had the 1yr in Dec. Knew cyst was back, but told no surgery now but see pain management Dr. Rameriz went thru 3 shots still having bad pain & symptoms they want me to use Boston Scientific pain system where they install leads in the spinal cord. I don’t want to mess with the spinal cord. Right now I feel that all of us with these cysts are still being studied and we will eventually have a cure. I have a couple of tips for everyone. 1.} For Headache try using a night guard from your dentist at night. I did this as I tend to bite down when in pain. This helps by keeping your jaw from cinching causing pain. 2.} For homemade ice packs use 1/4 cup rubbing alcohol with 3/4 cup water place in Ziploc baggie-Freeze.
    For your feet try using seal a meal, make in long slim size to the bottom of your feet & the top of you feet freeze. the easy way to keep these on your feet is to get some knee hi socks fold down the sock to form a sleve on your feet insert ice. Relax
    the burning stabbing painful feet. I sleep with ice on my feet. I have also made a ice slleve with Velcro to go around my waist that hold ice. Holds Ice in place very well. Hope you all the best.
    Lynda i

  40. Usman Shamaki says:

    Hi, all. For about 3 years now I have been having lower back pains which i attributed to the stress of driving long hours to and from work. Initially, I would take painkillers and I would get some relief. About a month ago, the back pains got so bad, I had difficulty standing up from a lying position. I went to the hospital and had an MRI exam. A cyst was found on my S4. Two neurosurgeons studied it and told me it was nothing to worry about. That there was no neural deficit. They advised me to start physiotherapy and exercises. A third neurosurgeon studied my MRI and advised I should not have surgery for it yet as there were risks associated with spine surgery.
    I have started walking and jogging and physiotherapy. However, I noticed a tingling sensation in my legs which, based on what I’ve read about Tarlov cysts is an indication that the cyst is putting more pressure on the nerves in the spine.
    Any suggestions or advice on what I should do?

  41. Janet Mitton says:

    I have a tarlov cyst on the bottom of my spine, a large android cyst runs from there to my sacro. I am in constant pain, have put on 2st with lack of movement, and i am so glad to find this site, i know now iam not alone ☺

  42. Lynda Rex says:

    I have gone thru Physical Therapy but did it in a pool. Which was good because it does not put extra stress on the nerve. I think the more stress on the cyst/nerve the worst off you are. I have learned how to pace myself when doing cleaning/vacuuming (only 1 room at a time). Always remember to put ice on the lower back/buttocks area after a workout. I am in my 50’s & have had 2 surgery’s 9 yrs apart. I also know when a storm is coming about 2 hrs away as I get more pain/swelling in the legs, back, feet etc..I live in the Dallas area so I went to Dr. Feigenbaum. Good luck as we all need it until they find a cure.
    Feel free to contact me for moral support via this site.
    Lynda Rex

  43. michele long says:

    Hi, I am glad I came across this forum! First in 08 I battled cervical cancer,went thru chemo and radiation after that was over 15 months later the repercussions from the radiation took affect with my intestines and some of my organs as well as my spine. Low and behold I have had several surgeries of my intestines, my small intestines are 3 ft. Shorter and my terminal ilium is gone. No gall bladder or appendix. And I have osteoporosis that started at around 49 it’s more advanced than should be at my age. I have been having lower back pain for the past two years with no great relief. I’ve done the caudal injections that did not work,of course pain meds, excersise, message is like it ed because of my intestines. Here’s the kicker: this past hear, especially the past 6 months pain has become unbearable,I did get another mri done of my lower back not on my tailbone. That was a mistake that is where most of my pain is and it radiates out to hips. Walking more than 30 minutes is no longer done, same with sitting cleaning, any activity for that matter, I have pretty much retired because of this. I have been doing research because I’m feeling like the dr. Are going to be bouncing me around to figure this out. So I went through some of my first reports from 2012 and there it was on the mri findings s2 tarlov cyst 14mm. Not only that in several other mri’s following this for my intestines it was noted that fluid build up around lower back was present. It suggest possible spinal! I went onto research tarlov more and all the symptoms were there I couldn’t believe it! this nails it all my pain even symptoms that I have had that I didn’t think where associated but have been having too. Ok, so now what how is this tested,do I go to a spinal dr. Or a neurologist, and is there no cure

  44. Daryl Ann Gordon says:

    Time for surgery or not

  45. Daryl Ann Gordon says:

    Dr Fegenbaum good?

  46. Lynda Rex says:

    Sorry to here of your other problems.
    I would 1st go to your family practice Dr.
    get a scrum MRI with & without contrast. I would then talk to your family practice Dr. as to which of the neurosurgeon’s that work on these
    could be your best option. Also consider which Dr. would be closest for you to work with. See this web site
    https://www.tarlovcystfoundation.org/tarlov_cyst_information0.aspx
    I would talk with all your Dr.’s for advice. Dr. Feigenbaum is learning from each patient like the others. I really hope the Dr.’s can find a cure
    soon. I can’t really say there is a cure as I have had 2 surgeries for 5 cysts in 10 years. I hope we all will be cured as these are very painful.
    Hope this helps.
    Lynda Rex

  47. Terry says:

    Hello everyone,
    I have been reading everyone’s messages, and was very surprised as to how many people have the same type of issues, and yet were told like I was, that there isn’t anything they they can see that is causing me the problems I have been experiencing..I have had a surgery in 2009 for a removal of a tarlov cysts in my lower back.. I have had issues with my lower back, and severe body aches and week body parts but was told that the cycts are not the cause of the problem, and I lifted something heavy..This was and continues to be the most stressful, painful thing I have ever experienced in my life.. Every time I have a CT or MRI done, I am told I have cysts all over every one of my organs.. I was going to a specialist in Baltimore, but the ride was over 3 to 3.5 hrs and to much pain to sit for that long.. He was the one who did the surgery..It is very unfortunate that there aren’t any Dr’s. in the area, that specialize in this area.. I am trying to find someone in my area that will believe me, and who has the experience to be able to help me somehow…

  48. Terry says:

    Hi Michele
    I started having severe pain in my lower back since I was 17..I went to every doctor you can think of..I went to a Neurologist, and was advised that looking at my MRI showed cysts but had nothing to do with my pain..I dealt with this for many years..I started not only having pain in my lower back, but in more places then can even begin to think about..I was advised that I have Tarlov cycts on every one of my organs..I was giving the name of a Neurologist in Maryland, who specializes in Tarlov cysts..After several times of seeing him, and doing MRI’s and other testing, he advised that he has done hundred’s of surgeries on people with the same problems I was having.. I had the surgery, and for at least a year had gotten relief..Unfortunately, the pain has returned, and with facing the problem of having the cysts on all of my organs, I just don’t think I am ready to go through this all over again, when I know the problem is just going to return, and the cysts on my organs are just going to get bigger and continue to press and have continues pain..The Doctor who did my surgery is Dr. Henderson..He works out of Bethesda Md. and the Drs. Hospital in Maryland.. He is a fantastic Doctor with so much compassion..I would recommend him to anyone who is serious about having there cysts removed.. I am now 58 years old, and have to just realize that this is just a continuation of what i have already been dealing with, and will just have to deal with it for the rest of my life…Good Luck to everyone, and hopefully someday they find a cure for this terrible disease…
    Terry

  49. Tito says:

    Therapy does a good help, let try it and hope for the best

  50. Pamela J says:

    My last MRI, There are numerous peri neural root sleeve cysts in both the cervical and thoracic spine. There are bilateral root sleeve cysts beginning at the C4-5 level extending inferiorly to nearly all thoracic spine levels. Possible idiopathic intracranial hypertension.

  51. Jen says:

    I too, have a tarlov cyst. It starts at L5 and goes to S5. I live in Baltimore and have seen Dr Long, Dr Kathuria, and Dr Welch in Philly. I have been fighting for surgery (long story) with Dr Welch for years. A diagnosis took 6 months after I was assaulted and have been in severe pain ever since 1.3.13. I’m at the end of my ropes and can’t continue living like this. The frustration is so extreme even when talking to friends and family about my problems. Doctors I see don’t understand the disease and treat me like I’m making things up. Glad I found this post. Gives me hope for the future. Keep going, just keep going.

  52. Stacey Ann Nelson says:

    Hi I’m still waiting for Medicare so I can get to Dallas for the surgery. I’m the person in the story they chose to post.

  53. Stacey Ann Nelson says:

    Hi I’m still waiting for Medicare so I can get to Dallas for the surgery. I’m the person in the story they chose to post. Go to the tarlov cysts disease foundation. They can’t remove the cysts they drain and pack them they grow from spine fluid

  54. Annetta Timmerman says:

    They grow back. Dr Feinstein quit doing tarlov cysts. I’ve had 55 epiderals in 15 years. Really helps mabe 2 months as long as I do nothing. Have to live with it.

  55. Dawn C. says:

    Can anyone tell me how large are your cysts? I just had an MRI for sever low back pain, hip pain, groin pain and leg weakness. My cyst is S2-S3 and is 1.5 cm. How much larger can they get? This pain is terrible, I havent found a doctor yet but I am near Cleveland Clinic. Any suggestions?

  56. pam says:

    I just recently had a MRI and my Tarlov cyst is 6 cm by 5.7 cm which is a lot larger than urs. Go To the Tarlov Cyst Foundation website to find out more and Best of luck! I feel ur pain!

  57. Alice says:

    Thanks for sharing.

  58. Alice says:

    Very good information.

  59. Stacy Turner says:

    I was just diagnosed with Tarlov cysts about 2 cm in size on my sacrum today. I have been in excruciating pain for over 3 months now and I’m scared that I’m going to end up in a wheelchair, or worse, in never-ending pain for the rest off my life. I live in NC now, but I am moving to IL where my daughters live. Neither of those places are anywhere near where the only 3 doctors in the country who specialize in their treatment are. I need advice. HELP!

  60. Shari Wilson says:

    I have had same thing s2 left since 2006 that I know of. Pain sent me to er. I know it did not go away do to many symptons. Does anyone know they long term effect of not being treated? Just starting to learn about this. I have to lay down almost 24/7 to keep pain tolerable. Am on pain meds. They do not help when pain is real bad. Not sure if they help at all for this problem.

  61. Sharon Jones says:

    I was diagnosed with a “gigantic” Tarlov Cyst, S1 through S3, after years of pain. My neurologist finally ordered a ‘baseline’ MRI and then a CT scan of the sacral spine for a definite diagnosis. My file was referred to two neurosurgeons as well as Mayo Clinic Neurology. None of these could help me as they had no knowledge of Tarlov or the surgery associated with the treatment of such. This was when I realized I would need to be proactive if I was to be treated for this quickly progressing disease. My husband and I made a trip to Johns Hopkins in Baltimore for a consultation. I met with a neurosurgeon who told me they were no longer performing surgery since Dr. Longs retirement; however, they offered what is called a fibrin fill procedure. The doctor who performs that was on vacation. That in itself turned out to be a blessing. I not only had this huge cyst, but also an apparent congenital defect whereby my spinal sac did not end properly. The fill would have done me no good. Back at home, I found out about Dr. Frank Feigenbaum. He was in Kansas City at the time. He has the knowledge, experience and expertise to successfully treat these cysts. It was not until January 2010, that I was able to have surgery. By then, my S-1 through S-3 vertebrae were severely eroded as a result of this cyst in my spinal canal. I would love to say I am pain free now, but that isn’t the case. However, praise God I am not in a wheelchair. I would love to have a neurologist who had an inkling of what this disease is all about. I went to a neurologist at Mayo hoping for some maintenance care, but he only wanted to present an argument about why I should not have had surgery. This was coming from one who knows nothing about Tarlov or the fact that I would be in a wheelchair by now without surgical intervention. Dr. Frank Feigenbaum now located in Dallas, Texas, is the doctor for you if you are experiencing pain and complications associated with Tarlov Cyst Disease.

  62. Andrea A says:

    Hello! How long did you have to wait before you first consultation with Dr. Feigenbaum until you were able to get the surgery?

  63. Vanessa says:

    Hi there, I am 24 years old and was diagnosed with tarlov cysts on my spine. Started with one then they saw a lot all the way from my sacrum to the top of my spine. I’m from Canada I live in Ontario anyone from here experience this? I have no idea what to expect and I’m very scared. Still waiting to see neurologist. I have two small children and being a mother is everything to me. This pain is unbearable. I just want to get back to normal and be able to do the things a young mom should be able to… The doctors I’ve seen don’t seem to really understand what it is I have and I feel they don’t think I’m in as much pain as I tell them. I just wish they could understand. This is controlling my life and I’ve had enough. What pain medication works for you? Anyone who has any insight as to what I could suggest to my doctor would be greatly appreciated. I’m a full time mom of a ten month old baby girl and a four year old boy. With very supportive family. Just wish I could get better pain management so I could at least live my life a little bit easier… Any insight would be so grateful. Thank you, Vanessa

  64. Izzy says:

    it took me 4 years to find out I have a 6.6cm tarlov cyst. I am finally seing a neurosurgeron in 2 weeks. I am convinced it is due to epidural after my 2nd baby, the pain started followinf my delivery and never stops 24hr/24hrs with many symptoms. I tried several treatments to finally talk face to face to my doctor and tell her I am not crazy, I have something causing my pain and various symptoms. Finally she accepted to run MRI and found out about the cyst. I read on the internet what Tarlov cyst is and here goes all my symptoms. I hope they remove this thing from me. I am also a young mother. I just want the pain to go away.

  65. Sheila says:

    I was just diagnosed with tarlov cyst. I go see a back Dr. next Friday. I have been in terrible pain for the past year but also having problems with incontinence of both bowel and urine. I hope they can figure some thing out soon.

  66. Michelle Stevens says:

    Have any of you been to a chiropractor? I’m wondering if chiropractic treatments can cause this

  67. Doreen Harris says:

    Does anyone have pain when you sit?? Even on a soft couch, when I sit I get a sharp pain.

  68. Lynda Rex says:

    Doreen,
    I think we all have pain when sitting/standing/walking etc… Once you have this long enough you will know how the nerves travel down your legs & back up again. They have a triangle shaped pillow type
    seat that you can get to help with pain while sitting. My best suggestion for pain is ice packs.
    Good luck and remember you are not alone in this.

  69. L Johnson says:

    I’m in Dallas and have pain from Tarlov cysts and have thought about seeing this Dr also. My back Dr seems to think it may not help but its worth a try, right? I fell and severed my quad tendon and after numerous surgeries and being in leg casts, I developed this also. As if one problem with walking wasnt enough.

  70. Lynda Rex says:

    If you are in Dallas I would go see Dr. Frank Feigenbaum. http://www.pinecreekmedicalcenter.com/tarlov-cyst/ This is your best bet. I would talk to your primary care Dr. 1st then get copies of your MRI & go see him you are lucky you are in Dallas. Good Luck!

  71. Hiren Vora says:

    Hi. I have Perinural cysts and its paining while Sitting, sleeping and walking making my life miserable. Plz give me opinion to get relieved from this

  72. Lynda Rex says:

    Ice packs on your lower back, & where ever you have pain. When doing anything take breaks about every 10 minutes. Get wedge shaped pillow to sit on. Think about see Dr. Feingenbaum in Dallas. Good Luck!

  73. fun va says:

    Who are the three surgeons who perform this surgery on Tarlov cysts? Are there truly only three of them currently? Is t true the only procedure is to clip/remove the cyst , pack the area with body filler e.g. Muscle/fat, and fuse the affected vertebra? What if they catch it sooner?

  74. Lynda Rex says:

    Please look at this web site for Dr. Feigenbaum. He will explain a lot. He uses an bovines vein to cover the cyst because if you drain them they come back but more is what they think. The other Doctors I don’t know. http://www.pinecreekmedicalcenter.com/tarlov-cyst/

  75. Jean Hammock says:

    Hello, I just had my MRI 3/8/16 and it showed not a whole lot had changed, still disc degenerative disease, bulging disc L-4, L-5. Also L-5 -S-1. Mild loss of disc height from L3, – L4 through L5- S1 ( WENT FROM 5’5″ to 5’4″ ) then my doctor told me that I have arthritis in my lower vertebrae’s. But she never mentioned this ( small right S2 Tarlov cyst is noted ) what does that mean? Who should I speak to? I looked up symptoms and that could explain at least half of my symptoms! My last MRI before this one was 5/2009

  76. Lynda Rex says:

    Jean,
    You said your cyst is small. The biggest problem with these cysts is when they block or compress the nerve. You have more than just the cyst to consider. I would talk over your problems with you family practice Dr. and your family. I think
    you need to determine with them what is the worst problem & google Tarlov Cysts. Tell the Family Dr. what you saw on line maybe your Dr. will also research this & decide the best option. Your doctors know your age, medical history best. You must advocate for your best interests
    if you think the Dr. doesn’t listen to you. Dr. F Feingbaum is in Dallas and that is where I live so my choice was easy. He also has good explanations of what these cysts do
    & other question can be covered on line. Don’t feel alone feel alone. We all feel your pain. Take care and best of luck!

  77. Tara L. says:

    I’ve just been told I have a 1.5 cm by 1.8 cm Tarlov Cyst in my Sacral spine at the S 2-3 region. I’ve been having symptoms for the past 5 to 6 years (pain in the ‘tailbone’ area, sciatica down my left leg, pressure in both legs, pins and needles feeling in both feet, bladder and bowel issues, headaches, ringing in my ears and lower back pain. My Pain Management- Spine doctor doesn’t seem to attribute any of my symptoms to this cyst; although I have foraminal narrowing and two bulging discs at L 3-4 and L 4-5 with disc degeneration. I’m in constant pain… very depressing.

  78. Shana says:

    I am 18 years old and recently got into a car accident. After a month of going to the chiroprator i was feeling better so i went back to work. I began feeling sharp pains in my back and major weakness in my legs today I have been diagnosed with tarlov cysts on my sacrum. I have no idea what to expect and I’m worried. Prayers and advice on what to expect are greatly appreciated.

  79. Lynda Rex says:

    Tara,
    I would recommend getting a second opinion. I have learned that older Dr.’s are not always keeping up with the latest, greatest techniques. Also do you research on the internet for Doctor’s. If you live in a big city you have better options. Depending on your insurance, you can make an appointment directly or get a referane from your primary care Doctor to the Doctor of your choice. You do not need to advise you spine/pain Dr. I would take a copy of your MRI. I would also consider the Dr.’s that speciality is in cysts. You can go Directly to one of these Dr.’s. If you are talking certain medicines for pain they can cause depression. Please be mindful of these medicines. Also I have tips on headaches get a mouth guard. The best ones are from your Dentist if you can afford them if not your drug store wshould have some. I went to my Dentist who advised that when you bite down hard due to pain this can cause headachs that I had. Ice is your best friend for pain. Put ice packs on your back, also on your feet or anywhere you have pain. I hope this helps and I feel that the larger the cysts get the more pain you feel. I hope these tips help and please don’t feel alone as there are quite a few people who have cysts. Take care and best of luck!

  80. Mary B. says:

    I have been told I have Dural ecstacia and have also been told I have tarlov cyst. I have the exact same symptoms as Tara L. I am also a Marfan’s Syndrome patient. What do I have??

  81. Lynda Rex says:

    Shana,
    I 1st want to say I’m sorry this happened to you. Please stop seeing the chiropractor I think this is aggravting the cyst and could be causing more pain & symptoms. Look over the internet & all the prior
    posts. I recommend you to try not to worry but to see your options & go for the best option for you. I also want to tell you what you can expect. Everything depends on where you live I feel. Larger cities have more options for Dr.’s. I have found out that the best thing to do when finding a Dr. is to do your research. Also your Insurance is a big factor. Please don’t feel like you are alone. Prayers are always with you, all effected and the Doctors.
    Start a log for all your questions for the Doctors. Keep a log all of your symptoms for the Doctors.
    Good luck! Feel free to contact me through this site for support.

  82. Andrew says:

    Shana,
    I personally wanted to thank you. I was also diagnosed with tarlov cysts just recently and has been causing my life to be a living hell. While not as severe as what you have explained, I do have ALOT of the issues you have explained here in your story. I just wanted to thank you and let you know you are not the only one having to fight with this.

  83. Nicole says:

    Shana,
    I can totally relate I go between using a cane to using a chair due to pain. I have been this way for 20 years (a chiropractor broke my neck ). The last MRI I had revealed the cysts but the doctor didn’t feel the need to tell me even though I am suffering 90% of the symptoms. I only learned about them yesterday at the pain clinic when I showed her the swollen mass just above my tailbone.

  84. Kam says:

    Hi Lynda, can you please describe your bladder symptoms? I was diagnosed with a tarlov cyst on the s2 nerve root measuring 7mm. I have been having pain after urination and pain after ejaculation for 3 months and I have been misdiagnosed numerous times. The only thing that correlates with my symptoms is the cyst and it’s location. Thanks.

  85. Kam says:

    Apologies, my comment should have been directed at Tara not Linda. Can you please describe your bladder symptoms? I was diagnosed with a tarlov cyst on the s2 nerve root measuring 7mm. I have been having pain after urination and pain after ejaculation for 3 months and I have been misdiagnosed numerous times. I also have bowel dysfunction in the sense that I have narrow and small stools from time to time. The only thing that correlates with my symptoms is the cyst and it’s location. All else on Mri is normal The prostate gland is normal. The urinary bladder is normal. The rectum is normal. Periprostatic soft tissues
    are normal. The neurovascular bundles are normal. The sacral plexus is normal. The sacrum is normal. Normal
    subcentimeter Tarlov cysts are noted involving the sacral roots. The L5-S1 and L4-5 discs are normal.
    The abdominal muscles are normal. No evidence of a rectus abdominus injury. Pubic symphysis is normal. Thanks.

  86. Michelle says:

    Do you by any chance have breast implants? I found out about this disease from a lady that had BII (Breast Implant Illness), which is an auto immune reaction to both saline and silicone implants. Most women with implants will develop BII symptoms at some point in time. If you do have implants I would suggest you look up BII, there are thousands of women who got bizarre auto immune and inflamation related illnesses all connected to the implants. I had them removed May 6 and felt an immediate relief. Some people arent so lucky, they waited too long not knowing what the problem was. Good luck.

  87. Susan says:

    On 12-27-07 I had the procedure done called Spinal Fusion with instrumentation
    The implants they used are PEEK ALIF w/Talon Screws w/Infuse. I was 34 and the back pain was unbearable, after rounds of shots after shots that just didn’t work, I’m still on pain meds, my doctor is a great doctor who wants me to get the Neuro Stimulator implanted (my old doctor recommended it) before my surgery but I was too scared about the thought of having something electrical in me all the time. I’m 42 now still in chronic pain, but I get up and have to go to work everyday, my pain management doctor wants me to have an MRI done on my hip now due to other pain besides in my back, but my insurance sucks and I just got him paid off from a procedure done in 12/14. In 2008 though when I had another MRI done after my back surgery they noticed that I have a Tarlov Cyst in my lower spine. I had asked the doctor what could be done about that and he informed me surgery to take it out could be real risky, worse than the back surgery, and if he was to drain it that it would come right back. I keep wondering over and over if maybe it’s getting bigger or not, but could that be the cause of all the pain I’m having worse right now? Any inputs from all of you would be appreciated! I’ve had so many people say you’re a hypochondriac! But let me tell I’ve told them until you feel and deal with my everyday pain (can’t do dishes without having to hunch over for a bit cause I hurt, can’t do a lot of walking because the pain gets to unbearable and I have an office job sitting in a chair all day to where I constantly have to stand up and so on) I would give any of them my pain! Not to mention it’s causing not only the hips, legs, knees to hurt but severe headaches due to it moving up to my upper back.

  88. Beth Lea says:

    I’m so sorry to read about all these Tarlov Cyst problems. My heart goes out to OP. I just wanted to offer some hope to sufferers out there. I have had a TC burst on me recently. The pain had been mounting for months. To cut a long story short, I accidentally tripped over, the result was my pelvis jerked suddenly. Since then, the pain was markedly decreased. Later that day, I got a really bad headache and then, when the headache subsided there was all this horrible gunk coming out of my nose, I have never had that kind of stuff leave my nose before. The gunk was also full of blood, eventually running clear, then thickening up every morning. I have needed to insert a q-tip with coconut oil each morning to clean out the dried blood and mucous. Because so much of it came out on that first day, I know this sounds horrible, but I was able to smell it and it smelled of dissolved gelatine. This is no coincidence because I have been following a strict healing diet for about 7 months. I have been eating gelatine, both from bovine and porcine sources, once a day for 7 months, with plenty of fresh vitamin C (oranges and grapefruits). Because the headache stopped after say 2 hours and because this gunk continued to exit from my nose for about 10 days, I’m pretty sure that I was able to heal the rupture myself, because my body had a continuous supply of gelatine in my diet. I’m so pleased to say the pain in my back has improved every day and I am now in a position, 3 weeks later, to say that I can finally do all the things again that I had been unable to for about 10 months e.g. crawl on the floor, cut my toenails and squat and kneel, willy nilly. It turns out that you need lots of gelatine in your diet in order to make natural Fibrin (derived from thrombin). Which is a non-globular protein. Various other ailments of mine have also healed since following this diet e.g. RSI of the index finger and wrist, shoulder and neck pain all disappeared.
    If anyone wants to email me regarding all of this, please do.

  89. Dennis says:

    Sound painful.

  90. this is really painful story, I pray to god and believe in god. he will set everything right

  91. Heba says:

    Hi Beth,
    I’m suffering from a Tarlov cyst in my sacrum, and your story gave me hope !
    I’ve read many stories , and you’re the only one the only one that mentions a rupture of the cyst ( something that I dream of happening to me)Can u please give more detail about the gelatin products u’ve been eating and where they can be found. Plz also update on how you’re feeling now. Ive also been diagnosed with undifferentiated connective tissue disease. Does anyone else have an autoimmune condition ??

  92. Dane P. says:

    Can’t believe I found u all. I had neck surgery, then hip replacement then psoas tendon release. After that I felt like I was getting the flu every day, at first it was off and on now it’s 24\7. Can’t bend walk stand or sit very long. Or it gets worse. Today the found a TC. On low spine. I was hoping for a herniated disc to be honest…Tarlov. cyst…whoda. thunk. It. So bursting it is our only hope…wow. OK JELLO TIME.

  93. Dane P. says:

    Beth. Just wondering how u doing today?? And if there is a specific diet or formula with the Jell-O. And vitamins

    Thank you.

  94. Jennifer says:

    Thank you for sharing your stories. I too am in quite a rough spot. I was a dancer for 20 years, and retired in 2007 when they found 2 TCs in my S3 and S4 of my spine. I then began teaching. In 2013 they had begun to erode my tailbone, and I had to retire at 31 years old. Now, in June of 2016, they are 3cm each, causing paralysis of my urinary system, digestive system, effecting my reproductive system, I’m falling frequently, having horrible pain and numbness in my legs and tailbone region, as well now I am in acute renal failure due to the urinary system being effected. I live in Atlanta, GA and my last hope here of surgery is September 19th. I’ve begged every neurosugeon I can find, but no one wants to take it on…I just want my body back. Thank you all for listening, understanding, and relating to what I am going through. May there be more education out there for neurologists, so we as patients, don’t become as far gone, before they send us for help…

  95. Jennifer says:

    I have 3 autoimmune diseases along with TCs. Celiac Disease, Graves Disease, and Endometriosis. It is rough with the fevers, joint pain, etc that goes along with AI diseases. I understand :).

  96. Satya says:

    I have lower back pain. My MRI report showing 8*6mm perineural cyst at S2-S3, also diffuse bulge of L4-L5 and L5-S1 IV discs intending thecal sac and neural forminal narrowing. I was having very active life style before this pain but now I m fighting with the pain. A neurosurgeon advised me to undergo a surgery, but I just want to avoid surgery. Can anybody tell me that , is the surgery only option? Any alternate treatment? How much are the chances of surgery success? It will be a great help for me. Thanks to all.

  97. Heba says:

    Hi Jennifer,
    Thx for replying . I Can really relate to what you’re saying. I’m 34 yrs old ,and can barely work part time now. I’m always in pain. I can barely take care of my 5 year old son. Are you scheduled for surgery Sept.19th??

  98. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/

    Best,
    Ilana
    Managing Editor

  99. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/

    Best,
    Ilana
    Managing Editor

  100. Lauren says:

    I am suffering everyday like everyone else has posted. I’m so sorry for all of us going through this. I found out about my tarlov cyst from a ct scan. I need to find a Dr in Florida to do an Mri. I keep reading about these horror stories that this is rare and not many doctors are knowledgeable. Has anyone found a doctor in Florida? I am desperate to find help. Thank you for any info you can provide. God Bless

  101. Jennifer says:

    I lived in Orlando, before moving to Georgia. My primary ordered my MRIs; however, I couldn’t find a neurologist or neurosurgeon who would/could help. I did find a pain specialist who was willing to treat the symptoms. Sadly, that’s sometimes all they think they can do… I hope you find someone soon!

  102. Karin Ward says:

    Try Dr. Ricca in Searcy, Arkansas. My L4-L5 are fused, I also have a cyst on my sacrum, when I ask about the cyst that showed up on my MRI he told me this surgery was much more complicated, so I’ve waited. He travels the world educating himself and has even invented some surgical devices for back surgeries. You may wait 4 hours for your appointment, but when he sees you, you will get however much time is needed!!! I actually had to wait for my surgery because he was going to Paris and Germany in order to train with other of the world’s best!

  103. I have the exact same thing Satya, literally right down to the size of the cysts. I’ve been told by my neurologist and internal medicine Dr that there’s nothing they can do. That most the time they don’t hurt. But I’ve had pain for 11 yrs and neural issues.They are just getting worse. It effects my whole body. I don’t know what to do any more. I’ve been through 2 pain clinics and so many therapies that just cause me more pain. And I’ve been told that the therapy is not causing me more pain. That was before they discovered the 2 cysts.

  104. Jennifer says:

    Heba,
    I’m sorry it took so long to respond. I had my appointment on the 19th with a new neurosurgeon here in Atlanta. He was very uneducated on TCs. He said no surgery (after my neurologist said it was a must.) He said they do not usually cause symptoms, so I asked how large he’s seen before. He said about my size. A brief background: I have 2 TCs at s3 and s4 that are 3cm (that is correct) each. They have complicated my urinary and bowel systems to near paralysis. I was diagnosed with Acute renal insufficiency (headed towards failure) in August due to my urinary retention. We really need more educated surgeons out there…I think it’s going to come down to traveling 700+ miles for me. I’m 34 as well, cannot work (I was an elite gymnastics intructor/all-star cheerleading coach after diagnosis in 2007, but prior to that, I was a professional dancer for 15 years.) This disease really puts your life on hold. It’s so comforting to know there are others out there, but my heart hurts for the pain and frustration everyone else is going through. I hope we can all find answers soon…

  105. Linda in Dallas says:

    I have read through all of your comments and totally feel your pain. I have much of the same back history as many of you, with two lumbar surgeries after a fall in 2003. Like most of you with any back pain history and MRI imaging, Tarlov Cysts were never mentioned. Spinal stenosis..yes, herniated and bulging disc…yes, scoliosis….yes – but no mention of any Tarlov Cysts. I have only learned that I have Tarlov Cysts at S1-S2 in the past month when I had the last lumbar MRI and I have now seen 3 orthopedic surgeons that do not think the TC is an issue. I was scheduled for a steroid epidural next week, but I have canceled after readying about the dangers of this with TC. I made an appointment with Dr Feigenbaum for late November, but my primary care referred me to a neurologists first to have all the information I can possibly gather. I have a really great relationship with my PC. After all the surgeries and treatments that I have had since my fall in 2003 I believe in the bottom of my heart that all my tailbone, buttocks and leg pain are from this rare disorder. Praying for all of us with this disorder to have a good and healthy outcome. Blessings ~Linda

  106. Lynda Rex says:

    If you need any support or have any questions feel free to contact me at
    lytrex@sbcglobal.net I have had the surgery & live in the Metroplex. Had 6 Cysts total.

  107. Brooke Enos says:

    Nearly two years ago, my right leg stopped working. When I tried to use it, I had an incredible amount of spasming of my sciatic nerve as well as muscle spasms in my back and leg. I was diagnosed with a large Tarlov cyst near my tailbone. All the doctors I have seen, including 4 neurosurgeons have told me these do not cause symptoms. I believed them. Four surgeries later, I have only worsened and now can not even sit or stand. I have been to the hospital 20 times including 3 ambulance rides. The hospitals have labeled me as a drug seeker.
    My life is ruined. I lay in bed 24 hours a day. Every. Day. A medical orphan.
    I found out there is a doctor in Dallas, Texas that does this surgery. At this point, surgery is 6-8 months away. This is an unfathomable time frame to me. I will need a special type of private airplane to even get there. If you have any ideas on how to get in sooner or want to offer support, please email me at brookeenos@live.com Thank you

  108. Cathrine says:

    I too was recently diagnosed with large Tarlov cyst. I am very curious how your surgery went. I live in Minneapolis and it seems like no one understands or knows what to do with me. I was misdiagnosed for many years.

  109. Tonya says:

    I have had problems with my right leg/foot aching, electrical shocks, trouble bearing weight for 8 months. My doctor ordered an MRI, which showed 3 Tarlov cysts. Doctor said they were not the cause of my symptoms as it was an “incidental” finding. Has anyone tried taking L-lysine and noticed an improvement?

  110. britt h says:

    I was just diagnosed in the last week after many visits to the ER not knowing what was wrong, but every day the pain was getting worse. I was fine just 3 weeks ago and now I feel like I’m in hell. My TC is in my neck between c4&5 and it effects my right side (in right-handed) and as of this morning I couldn’t even feed myself. Obviously, I’m not working. I can’t. My fiance had had to take 2 weeks off of work without pay because I can’t do ANYTHING by myself anymore. our finances are just completely screwed. I am pretty tough when it comes to pain, but this is unbearable. I’m only 29 and I feel like a 90 year old woman. I’m trying to stay positive, but it’s so hard to do right now… Trying to stay hopeful.

  111. Mimi Z says:

    Your comment is awaiting moderation.

    Hi Everyone! Sorry that we are all here, obviously suffering from TC or trying to help a loved one that is. I have been suffering from terrible tailbone pain since I had my son 8 years ago and the pain has become excruciating in the last year. I cannot sit for longer than 5 minutes without having to lean forward, stand up or readjust myself. Along with the pain I have a burning sensation and numbness down my leg into my feet. I finally had an MRI done this past December and I have 5 TC’s that they put are “incidental findings”. They are not incidental as my pain is the reason I requested my doctor to order the MRI…so frustrating. My biggest cyst is 19mm x 12mm and they are located in the S1 and S2 level. Anyway, I need your advice, do I need to see a Neurosurgeon or Orthopedic Surgeon? My family doctor is referring me to an Orthopedic Surgeon and I want to make sure this is the specialist I need to see. Any advice would be greatly appreciated. I am in Canada by the way.

  112. Jennifer says:

    I am so sorry to hear what you’re going through. Unfortunately, I have found there are not many doctors familiar with this excruciating disease. I have 4 cysts, with 2 at 2.5×3.4 cm at s2,s3. They have gotten to the point where they have caused paralysis in my bowels and bladder (also causing acute renal impairment.) I was referred to a NEUROLOGIST by my primary physician, who then sent me to a NEUROSURGEON due to the progressive decline in my bodily functions (excruciating pain aside – I was a ballerina, and can barely walk now.) 4 surgeons later, they all said the same thing “this isn’t your problem.” When I asked how large of cysts they’d seen, they said mine were the largest. I asked if maybe that was why they were causing such damage, but they couldn’t/wouldn’t answer. I, too, found Dr. Feigenbaum (I might have butchered his name.) He said to send all my records, and he’d look at my case to see if he could help me out. They help you with going through insurance, finding hotels, etc (I’m in Atlanta and he’s in TX.) TCs are his specialty. He has videos on YouTube, and his website has wonderful information. Definitely check him out! I hope you can find answers. I will keep you all in my thoughts. We are the only ones who truly know what we go through on a daily basis. Stay strong, keep up with normalcy as much as you can, and stay hopeful <3.

  113. Jennifer says:

    Anyone have hemangiomas as well? I had my last MRI to see if I’ve had any growth, and I have a hemangioma in my T8 that is atypical and growing. My neurologist didn’t know anything about it. He thought they might be related to TCs, but they grow in the bone…wondering if anyone here has been diagnosed? If so, pain? Growth? Etc? It’s gone from typical to atypical and grown 4mm in 6 months. Thank you!

  114. Jade Green says:

    Diagnosis of TCS last July, loss of feeling in my right leg, cramps and pins and needles in my hands, cyst 65mm length over s1-s4 in heaps of pain but still working as I cant afford not to. 4 kids to care for. I’m just so tierd of beeing in pain. Whish life got easier not harder.

    On the plus side have an appointment with a surgeon in Sydney Australia in March

  115. Shari says:

    I have just been told that I have a tc seen on MRI. My pain dr is sending me to a neurosurgeon.

  116. Shari says:

    I am so sorry for everyone that is suffering from this horrible disease. It is excruitaing and life changeung for the person with the cysts and the entire family. Has anyone expeirence cysts one side of the sacrum and symptoms more sever on the opposite side. This is the case for me. Pain started and is mostly present in the left side. Is now progressing to the right side. It started out as pain in sits bone area which progressively became worse. It is almost a full year now and I am severely limited I. What I can do. Not much. Bending to pick something off the floor is out if the question and sitting is awful too. I have added cushions to car, kitchen chair etc. I recently had epidural steriod injections both sides s1s2 and I feel it has gotten worse. The pain medication doesn’t seem to be working as well as it did before injections. Most positions are uncomfortable. I used to find relief lying down in bed. Yet, I can’t get my legs/groin /feet in a comfortable position. My groin pain, low back pain leg and foot pain ( both feet) is unbearable. Has anyone had plantar fascitis diagnosis or symptoms of plantar fascitis that actually turned out to be from the cysts? I have an appointment with a neurosurgeon coming up and am trying to learn as much as I can from real people’s experiences. I appreciate any feedback. Sending out positive energy for all of you effected by this madness.

  117. Robin B says:

    I have 3 Tarlov Cyst and was hospitalized December 2016 due to severe pain in my tailbone area. I recently traveled from Ohio to Dallas Texas to see Dr Feigeanbaum. I’m having a nerve block soon, at his request, and then possibly surgery soon. I have no other reason to have the pain so I know it is the Cyst causing my pain. Leg pain, tailbone, feet and sacrum area. Do not let Neuro surgeons touch you until you talk to doctor Feiganbaum in Dallas Texas.

  118. Lynda Rex says:

    My best advice for everyone is the ice packs. This calms the nerves. I sleep with ice. I learned this after my surgery with Dr. Feiegenbaum. Good luck to all & God bless you all suffering for these cysts.

  119. Lorie Estrellas says:

    Was having lower back and left leg pain,numbness and tingling sensation for over a year diagnosed with herniated discs and annular tear. Has been going to a neurologist and physical therapy since then, but my symptom s are not going away and was just getting worse so I requested for another MRI recently and was confirmed to have 2 Tatlov cysts.Sent my disk and report to a neurosurgeon in Sacramento named Dr. Schrot and had phone consultation.Being hesitant to travel to have this treated
    I thought of searching more and found the head of neurosurgeon at Penn Medicine in Pennsylvania is also familiar with this rare cysts.
    I have yet to see him this coming Monday and just praying and hoping that he could really help me to feel myself again.

  120. Leanna says:

    Did you have your TC surgery yet?
    I am in a similar position. I’m a young person who has been bedridden for three years and the medical professionals helping me had no idea what was causing my symptoms. It wasn’t until my most recent physiotherapist recommended I look into Tarlov cysts and see if they matched my symptoms. A few weeks later and haven spoken with Dr. feigenbaum, my sacral TCs have been impinging my sacral nerves and eroding my bone all of these years. I am pregnant right now with my first (surprise!) baby but plan on having surgery as soon as it is safe.
    Thank you for sharing your story and I’m sad to hear that you’ve been in pain like this for so many years. I plan on becoming an advocate myself after surgery (if physically possible). More people, especially healthcare providers need to be aware of this debilitating and painful condition. I sincerely hope you are doing better.

  121. Mary Francis says:

    I, too, have a Tarlov Cyst at L5-S1 which is about one inch by one and a half inch and showed up incidentally on an MRI. Have radiculopothy symptoms typical of L5-S1 dermatomes. I believe there is a doctor in Mpls. that treats these cysts and his name is Dr. Sinicropi at Midwest Spine and Brain. If you still need help, try to see him. If your cyst has already been successfully treated please let me know of the outcome. Thank you.

  122. Ruchi Chandra says:

    Please go to dr frank Feigunbaum in Dallas Tx. Do not even think about going to any other doctor . He is the best

  123. Ruchi Chandra says:

    Please contact Dr frank Feigunbaum
    He is the best

  124. Shawna Lamm says:

    I also have recently had a hemangioma show up on my mri. I have several Tarlov cysts on s1 and s2 and it says numerous perineural cysts throughout the lumbar..my doctor hasnt said anything to me about any treatment..they keep saying fibromyalgia

  125. Shari says:

    I would advise you to see dr f in Texas. Regular drs do not know about tc and will tell you they are not your problem.

  126. Jill Fillingham says:

    I just had 6 sacral cysts removed two weeks ago with Dr. Feignbaum. I am 34 years old and my life was greatly affected by the pain and nerve symptoms. My decision to have surgery was easy, if it could help then absolutely. I flew from Michigan to Dallas on my last attempt to get the diagnosis and treatment I desperately needed and it was worth it. I had many doctors tell me there was nothing wrong or they couldn’t help me, and that’s when I found Dr. Feignbaum. I tell everybody he is a life saver, and is worth the trip. It does take time to get into his office, but worth the wait. His staff is awesome and the hospital (pine creek) were the best. Although I’m only 2 weeks out I’m doing better already, I can sit for longer than before surgery, but I do still have healing to do

  127. Shari says:

    I’m so happy for you! My surgery is June 27.

  128. Chris mcclintock says:

    Hi I have been diagnosed with a tarlov cyst I stay in the UK have said to hell with the pain and started on the pain killers.

  129. Janet Currie says:

    I have read your posts regarding Tarlov cysts and can entirely sympathise, especially with the first post. I had a very large cyst (it’s called a giana schwanoma) removed from the sacrum over 11 years ago and it has left me doubly incontinent, which I hate. I also am paralysed around the back passage and part way into the crotch, which makes walking very difficult. I don’t have pain, fortunately, because of the paralysis. I had the operation here in England, at the National Hospital for Neurology and Neurosurgery. I have heard of Dr Feigenbaum (I think that’s his name) as I read an article about an English lady who got in touch with the doctor and had the operation in Dallas (luckily she had private health insurance) and was very happy with it. I did get in touch with him but as I had already had the surgery he couldn’t help me. Besides, health care in the US is so expensive. I was hoping to find a site which could reverse the paralysis but I guess it’s permanent .

  130. susan emmara-klein says:

    jennifer,
    my name is susan and I have just been diagnosed with TC on my S2
    I was a ballerina for many years as well,
    I wonder if dancing caused this?

  131. Amy Hoffman says:

    Hi Robin,
    You mentioned your feet. I’ve been having excruciating pain in the bottom of my feet if I’m on them for like 2hrs or even if I have them on the ground and cross my legs. This is just one of many symptoms I have. I’ve got 2 Tarvol cysts in my Cervical region and 7 in my Sacral region. I still need a MRI of my Thoracic region to see if there’s more there. My doctor doesn’t think these are a problem and she doesn’t know crap about them. She says these arent causing any of my pain. Only my Fibromyalgia is causing the pain. I dont believe that at all. I’ve had to fight to get these MRIs. I plan on sending to Dr. Frank Feigenbaum since he knows the best.

  132. Tracy Bivins says:

    They are really not incidental findings. At first they were thought to be but the next article Dr. Tarlov wrote stated different. And all literature out there says something different. I never had them before these past five years along with excruciating headaches that are like nothing I can describe and wake me up out of a dead sleep. This on top of disc bulging, spurring, degenerative changes, disc narrowing spinal canal protrusion and so on. I am in chronic pain every day. And yes a neurosurgeon has agreed that these are more than likely the cause of the headaches due to leakage of csf we shall see as they are sending me to a neurologist that specializes in controlling pain hopefully without surgery. Good luck to all of you. It has made my body weak in the last several years.

  133. Jamie says:

    I’m so happy for you, I am also from Michigan and I will be hearing from Dr. Feignbaum August 4, 2017 for my cysts.

  134. Tara Richardson says:

    I am not one for surgery so I’m hoping beyond hope I don’t need a dangerous spinal surgery that could paralyze me. I already have a neuromuscular disorder and use a wheelchair… Our doctor has yet to call and tell me about the MRI or the Cyst.. We only found out because we went to pick up the MRI… I have fallen pretty hard on my tailbone many times during my life… I would complain of pain but the doctors would say “Oh it’s a little Arthritis”.. Makes me wonder how long I’ve had these cysts and no one metioned them.. I’m going to a neuro consult Monday and I’m gonna ask them to look at my previous MRI results.. They only did the lower spine .. From everything I have read they need to check my whole back for cysts.. I’m so freaked out…

  135. Leah says:

    Hello, my name is Leah. I’ve had lower back and neck pain for years. I’ve been told I have degenerative arthritis, cervical stenosis, and even had a doctor tell me I had bursitis even after x-rays showed I didnt. Doctors aren’t willing to even give me anything decent for pain. I fought for 5 years for disability and finally got SSI. I had a really hard time finding a new doctor because every doctor’s office I called and asked me if I had chronic pain and when I told him I did they would tell me they weren’t taking any new patients with chronic pain. I finally found a doctor and I had recently taken a fall on my front porch and was having really bad pain down my left leg and in my left hip. I thought I had injured my hip but I went to this new doctor and he said he thought I had herniated disc. He told me to come back in 6 weeks and we would see about having an MRI. I waited the 6 weeks and excruciating pain and went back and he wasn’t going to do anything. I told him I wanted an MRI and so he gave in and had one set up. I had the MRI, then I called a couple days later and they looked at the MRI and told me I had to slightly herniated discs but they weren’t bad and they were going to set me up with the pain clinic. I went into the patient portal and looked at the MRI results and it showed 2 slightly bulging discs, an incidental finding of Tarlov cyst and hemangioma(?) tumor within 2 of my vertebra, all in my lumbar spine. They didn’t even tell me. What do I do??! I’m at my wits end. I’m in tears as I’m typing this. No one will help me. I’m to the point that I’m considering finding someone I can get something from for pain, or starting to drink a lot or something. I don’t want to live the rest of my life not knowing if I’m going to be in so much pain I can hardly even turn over in bed, or maybe I’ll feel well enough to actually ride my bike…
    I’m on Medicaid and poor, so going to Texas probably isn’t an option for me. If anyone can tell me anything that may help, even a little, please tell me.

  136. Mary Sue says:

    Hello Ladies, I too am from Michigan and have the same symptoms as most of you have mentioned. I don’t think I have slept thru the night in 6mos due to the throbbing and painful legs which is made worse by the positioning during my sleep. My orthopedic surgeon missed my Tarlov Cyst as well when reading my report. When I found it, I asked that he explain it to me since it was never discussed. He pulled up my imaging, (I believe for the first time, initially relying solely on the report). His reply was “WOW, that is SIGNIFICANT, I’m glad you found that”. I asked what he meant by “significant”….He said well it is about the size of a plum. Then he told me to see a Neurologist who stated that this was out of his realm of expertise. How frustrating for all of us! I can’t find anyone to repeat my MRI, but this time including the entire sacral area. No one has anything to offer. You begin to think you are someone you never were after all of these physicians push you off and either send you to a pain clinic or PT. I realize everyone’s health insurance is different, but wondering if there is anyone out there who has found this to be a covered surgery in Dallas or anyone who knows how much a cash paying patient would pay? Sorry thats a bit personal but I’d like to have some sort of idea what I may be up against since surgery sounds like it is likely the only option as my symptoms worsen everyday. Thanks in advance!

  137. Jc says:

    Hi I just got diagnosed with Tarlvoc as well I was active Army got some back pain but Jan 3,2015 me, my husband, 6 months old daughter as well as 3 others got injured on a car accident in Kansas Airport the driver was a Doctorate student of Stanford txting and driving on her way home to Lawrence (T.C). The accident cause my military career and unbearable pain. They didn’t see the cyst not till Dec 2017 when the case was already close. I am frustrated and got depressed due to pain, loosing my Military career as
    well as unable to do more physical activites with my kids and job with out pain. My symptoms are upper and lower extremities weakness, sharp burning sensation, diarrhea and constipation, severe lower back pain and sleeplessness due to pain, my both knees are now deteriorating. I am continuously seeking medical attention for prevention and hopefully cure since now its affecting my knees, upper extremities and quality of life.

  138. Kris Lindsey says:

    I had a Tarlov cyst repaired by my surgeon in Dallas. It’s been a year and a half since surgery. I had relief immediately after surgery in the sacral area. However it only lasted for about 2 months and the pain came back but the pain was more intense now then pre surgery. I have had 2 MRI’S post surgery and it shows the area was healing great. I just don’t understand why the pain came back and the MRI showed everything looks great? I was told by surgeon that my sacral nerve was crushed from the cyst and he was hoping it would get better over time. Just wondering if anyone out there is experiencing the symptoms post surgery?

  139. Tim Lindhe says:

    I was working in a belting company in Ont Canada making conveyor belts which involved a lot bending over and pulling on belts.I did this for three and a half years. one day i woke up with this intense pain in my sacrum and could hardly move the pain was so bad. i went to my chiropractor thinking i strained my back to much. Two treatments did nothing, i went a walk in clinic and they just said i strained my lower back and would do no x-ray. I finally saw my family Dr. but she said the same i strained my lower back. I told her and show her where it hurt which was in my sacrum area and it was tender to touch and getting worse. I requested an MRI which came back showing a cyst in my sacrum but they said these do not cause pain. One day i felt and heard a pop in my sacrum and requested another MRI but they said it was the same size. i found a Dr.FF in Dallas and i sent him my MRI to view and he called me and told me that my cyst is 1 cm instead of only 7 mm as reported and he said it was pressing on my nerves. The second MRI showed it went up 1.5 cm after the pop and two nerve endings were pushed out of place. He called up to the hospital to correct their findings and in his report back to me stated there is nothing else showing that would cause my pain. All the Doctors here don’t think it is the cause of my pain and I continue to suffer three and a half years later because the WSIB are saying i had this since a kid. I am still fighting the system in order to get to Dallas to have surgery because every year that goes by it gets worse.

  140. Nancy B says:

    Wow…
    Hi everyone….just happened across this page. Am having a Tarlov Cyst at S2 drained and fibrin glued on 3/27 at Johns Hopkins due to pelvic and sciatic symptoms. Have had the cyst for @ 20 years.
    Hope the procedure works ..

  141. Very sorry to hear your about your loss and pain. Ive had bad pain along time, finally diagnosed in Feb. Your sx’s are so similar, and I know its sounds selfish, but Im glad Im not alone. What meds do you take?

  142. Mari Sanford says:

    Keep us updated on results.

  143. Debby Meagher says:

    Kris, your story matches mine completely! I was actually relieved by your story cuz I thought I was either a big baby or it was all in my head. How are you doing lately? Hang in there cuz you are not alone.

  144. Lisa W. says:

    How are you doing since the AFGI procedure?

  145. Lisa W. says:

    Kris,
    I am five years postop from surgery with Dr. Feigenbaum and doing very well. I can tell you that this is a very looong recovery of anywhere from 2-3 years for the nerves to completely heal. This isn’t like having your gallbladder out and you’re okay in six weeks, it’s surgery on the nerves of your spine and nerves are very finicky and heal at their own pace. It is not uncommon for people to have little to no pain for a few weeks after surgery and then have the pain return, sometimes worse than before. This is because the nerves are “waking up” from not functioning for so long. Because the nerves haven’t properly functioned in so long they fire off randomly causing an increase in pain and symptoms, and sometimes new symptoms as well. This is all normal and to be expected. You will have good days and bad days with this recovery that will gradually get better with time. The best thing to do is to listen to your body and don’t over do things. The least little thing can throw you into a flareup, which is inflammation of the nerves that were operated on that can cause pain and symptoms for a couple days to a few weeks. It’s sooo important to get as much rest as possible the first six months and delegate tasks to others if possible, use ice or heat to help with the pain, soak in hot epsom salt baths, and take any pain medication or ibuprofen as needed. If you aren’t already taking medication for nerve pain, you can ask your Dr. about a prescription to help with the nerve pain like, Gabapentin, Lyrica, Cymbalta, Topamax, Amitriptylene, etc. If you have any questions or want to talk more, you can find me on FB under Lisa L Watts or on the tc support group I run on there, Tarlov Cyst Support for Cysters and Mysters.

  146. Lisa W. says:

    I’m so sorry to hear that you’re also suffering with this disease. A trauma like a car accident can cause these cysts to become symptomatic. Someone rear-ending me, my mom, grandma and 12week old niece, that was doing 75mph while we were stopped for someone to turn in a curve caused mine and my Mom to have symptomatic tc’s. We’ve both had successful surgical treatment by the work renowned tc specialists, Dr. Frank Feigenbaum in Dallas, TX. There are only a handful of specialists that successfully treat and specialize in these cysts. The other top specialist is Dr. Rudolph Schrot in Sacramento, CA. You can send both Dr.’s your information and a copy of your mri disc for a free phone consult. It takes Dr. Schrot a few weeks to get back to you by phone. It takes Dr. Feigenbaum 2-4 months to get back to you by phone. It’s much faster to fly to Dallas for an in person consult. You can usually get an appointment within 4-6 weeks from the time you call and sometimes sooner. Dr. Feigenbaum used to work at Midwest Neurosurgery Associates in Kansas City, Missouri. There are a good number of Dr.’s in that area that recognize that tc’s can be symptomatic and will treat your symptoms.
    Unfortunately there is no cure for this disease at this time. Tarlov Cysts are dilations of the nerve root sheath (outer covering of the nerve) with cerebral spinal fluid. Somehow csf gets between the nerve root and the sheath causing the sheath to ballon out forming a “cyst”. The cyst cannot be removed because they are part of the nerve. The only permanent treatment for the cyst is microsurgical drainage of the cyst, finding where the csf is entertaining the cyst and “plugging” that opening with fat. Then they either suture the cyst sac closed or close it with a titanium clip, and then they wrap the nerve root with a sterile bovine pericardium so that if csf fluid were to ever enter the cyst again it can’t reinflate. This is a very tedious surgery and should only be done by one of the experienced tc specialists. Please don’t let anyone touch your back that isn’t a tc specialist. They could mess you up really bad for the rest of your life. Some Dr.’s will offer to drain the cysts, but it will only fill back up within a few hours or days.Other Dr.’s want to do an interventional radiology procedure known as an AFGI (aspiration and fibrin glue injection). This is where they drain the cyst and then inject it with fibrin “glue”, (which is made up of several different blood products). This procedure has also not had good results because the glue breaks down and the cysts refill, usually larger than before.

    All of the symptoms you have described are consistent with sacral tc’s and some are consistent with cervical tc’s. Do you know if you have any cysts on your cervical spine too? If you would like to contact me on FB, you can find me at Lisa L Watts or on the tc support group, Tarlov Cyst Support for Cysters and Mysters.

  147. Stacy Grieb says:

    My 17 year old son’s MRI just read tarlov cysts and extensive degenerative discs and plates . What does this mean for him?

  148. Jennifer Lopez says:

    Stacy…he has a long road ahead of him. Depending on the location and symptoms there are many directions it can go. I have 4 cysts from L5-S3 ranging from 1.5cm-3.7cm. I have a complete nerve block from my bladder and part of my large intestines. The good news is, there are interventions once the cysts are controlled (problem is only 2 physicians in US do the procedures- Dallas, TX and Sacramento, CA.) An Interstim can control the bladder and aid in bowel if that problem presents itself. The largest problem, other than the self-catheterization, I would say is the pain and discomfort. Neurologists unfamiliar with TCs, pressure remodeling, and especially those of significant size/damage to surrounding nerves, will tell you your son’s problems have nothing to do with TCs…get another opinion, until you find one who listens. This may sound harsh, but it is realistic. My professional Ballet career ended due to TCs, when I began losing control of my calf muscles, and feeling in my feet. They completely changed my life. I was originally diagnosed with 2 at .5cm 11 years ago, now they’ve grown 6x in size, and doubled to 4. Most important is don’t lose hope. Look to others for your support. Let him lean on you. And encourage him to alter his dreams to continue to meet the expectations of his body. Without my husband, and career in Film and Television, I may have given up hope after my last “there’s nothing I can do for you.” Now I look for the day they tell me, “there’s so much more I can do for you.” I’m beginning to research the correlation between autoimmune diseases and TCs. Anyone willing to share? I have also been diagnosed with: Endometriosis, Graves Disease, Celiac Disease, and Systemic Lupus. I truly believe there is something that predisposes us to this debilitating condition…who wants to volunteer their history to help me find out? No personal info needed. Just Diagnosis. Good luck, Stacy. We are all here for you, and your dear boy <3!

  149. vitiligo says:

    If the patch doesn’t improve consult a dermatologist so they may make
    the right diagnosis. This herb is popular, both naturally
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    Although the exact reason behind this disease is not yet known, professionals state that it is really an effect of some abnormality in the immune system.

  150. Tammy says:

    I have many of them in the thoracic spine. I also have IBS. I am interested in hearing more. As I am allergic to all pain meds, how does one control pain from these and would cortisone help eliminate them as it eliminates ganglion cysts?

  151. Lisa W says:

    Ganglion cysts and Tarlov Cysts are two very different types of cysts. Tarlov Cysts aren’t really a cyst at all. They are a dialation of the protective covering of the nerve roots coming off your spine. Somehow spinal fluid gets in between the nerve root and the protective covering (sheath) and causes the sheath to “balloon” out forming a “cyst”. Tarlov Cysts can’t be removed because they’re part of the nerve.. If you drain them they will just fill right back up. Some Dr.’s do an AFGI (aspiration and fibrin glue) procedure, which is where they drain the cyst and then inject it with fibrin glue to seal the hole where the csf is entering the cyst. This procedure almost always doesn’t work because the glue can move and break down and the cyst fills back up. The glue can also cause problems if you decide to have the surgery to permanently deflate the cysts. This procedure can also cause csf leaks and arachnoiditis.

    There are Only two neurosurgeons in the country that successfully treat the fifth. Dr. Frank Feigenbaum is in Dallas Texas, and Dr. Rudolph’s row is in Sacramento, California. You can send your information to both of them for a free consult by mai only two neurosurgeons in the country that successfully treat the Sith. Dr. Frank Feigenbaum is in Dallas, Texas, and Dr. Rudolph’s Schrot is in Sacramento, California. You can send your information to both of them for free phone consults. It does take Dr. Feigenbaum two to four months to get back to you for a phone consult because he is so busy. He is the top world renowned expert on this disease and has done over 3,000 surgeries. Dr. Schrot usually gets back to you within a month. He’s done a little over 200 procedures. It’s much faster to consult with Dr. Feigenbaum if you’re able to fly to Dallas and make an appointment to see him in his office in Dallas.

    The way they treat the cyst is that they go in and they drain them and they find the hole where the spinal fluid is entering the cyst and they plug it with your fat. They then suture the cyst sac closed and wrap it with a sterile bovine pericardium (the sac that a cows heart sits in), so that if spinal fluid were to ever reenter the cyst sac again it can’t reinflate. It’s a very tedious surgery and has a recovery process of 2 to 3 years for the nerves to completely heal.

    I run a support group for people with this disease on Facebook. It’s called Tarlov Cyst Support for Cysters and Mysters, if you would like to find it and send a request to join. There are some people that have had success controlling the pain using a very strict anti-inflammatory diet, essential oil‘s and a host of herbal medications.

  152. Mellissa McKown says:

    Please Everyone should contact the SS Admin & ask them to add Tarlov Cysts (so you can get SSI) to the list – Submit the Name of a Condition For Consideration – Here is the link
    https://www.ssa.gov/compassionateallowances/submit_potential_cal.html

  153. Steve Mosher says:

    Concerning the AFGI procedure, I would be interested in your (Lisa) response to an article about it by Johns Hopkins doctors that say that after 3-6 years post procedure, 74% of (213) patients were satisfied with treatment, and there were no significant complications. The article can be found at: https://doi.org/10.3174/ajnr.A4517. Have cysters that you know that had AFGI said differently?

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