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Deteriorating from My Disease: One Young Woman’s Painful Life with Tarlov Cysts


Stacey lives with Tarlov Cysts, of which the incidence rate is unknown.

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.

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  1. Michele says:

    I am wondering more about this disease

  2. 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!

  3. 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.

  4. 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.

  5. 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.

  6. 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

  7. 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

    1. 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

  8. 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

    1. 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

  9. 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!

    1. 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

  10. 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.

    1. 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

  11. 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.

  12. margaret sorenson says:

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

  13. Debra says:

    How many people are currently participating in this group?

    1. 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!

      1. 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.

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