Read Stacey’s Original Story Here.

Hello to those who suffer from this horrible, debilitating and painful disease. My update since I posted last (which, forgive me, has been a while): I just barely received PCN Medicaid, which is the lowest Utah state medical insurance. It won’t cover the surgery I need. It will, however, help with the cost of medication.

I didn’t get approved for SSDI. The Judge stated that he denied me because my symptoms are not the same. Well, of course I am worse. I wrote letters to all three Utah Senators, and one of them is helping me since they are all upset at the judge for not taking my case seriously even with two doctors backing me with proof of my condition and its limitations. The Senator is trying to expedite my case at the appeals office.

I’m losing feeling in both thighs; I have worsening spinal leaks, and fluid is running out of my nose. My muscle twitches are getting worse, where they jolt me out of bed. Dr. Frank Feigenbaum’s office called about a month ago out of the blue; they wanted me to know that they are still thinking about me and they wanted me to update them on my condition and situation.

I’m trying so hard I try to look at the positives; however, they are getting slim. I feel like they put me in the do not keep her alive pile; so as I continue to pray, I ask for everyone to pray for me also. Thanks for thinking about me. This is hard for me to write, as I am dizzy with muscle weakness. I mostly lay down on a heating pad on low heat since it can be 80 degrees outside and I still feel cold due to nerve damage.

41 thoughts on “Tarlov Cysts Disease Patient, Stacey, Gives an Update”

  1. lisa mapes says:

    Dear Stacey,
    I have suffered with this disease also and it took seven or more years to get diagnosed.
    I am so sorry you are going through this. I had my operation in march 2013. Doctor Feigenbaum is brilliant and a life saver. I am recovering and have some down days. I think just having the disease for so long took a toll on my body. I am praying for you and I wish so hard for you—that you can get this operation. To live with Tarlov pain is pretty much indescribable. My life has changed in all the ways you already know about. I am limited in what I can do but…if I can find or think of any way to help you I will contact you immediately. One simple thing that helps me is humor, as in funny movies or zany animal shows. My own animal family have been the best healers. I know its very challenging to even think about caring for another being when you are in terrible pain but a cat or a dog can give you endless love and support. My family does sled dog tours and horse adventures I wish I could lend you a animal healer. I know you need money probably more than anything . Write to me and maybe I can think of fund raiser ideas–maybe something with the sled dogs this winter? Please know your in our thoughts and I relate to your long suffering. Don’t give up, you sound very strong and brave and the world needs more great people like you. Sincerely Lisa

  2. lisa mapes says:

    Dear Stacey,
    Hello again. My husband just happened to bring home the latest copy of AARP magazine…Aug.Sept.2013 Gloria Estefan is on the cover . In her interview she talks of her past car accident and how she started a Foundation to aid victims of spinal cord injuries etc. I don’t know if her foundation would help with Tarlov cyst disease but its possible. I would think her organization would want to know about Tarlov cyst disease also. So many people who have had Tarlov have reported to experiencing auto accidents according to some of my reading on the internet. Anyways I am thinking of you and wish I could help. I continue on with good days and not so great days ; since surgury I am doing better in some ways and am still healing. If I find anything else out that could be helpful I will let you know. LIsa m

  3. blanca Janatsch says:

    hello, I have Tarlov Cyst and i am in the same boat as you, i am not able to find a Doctor that will fill out paperwork explaining the disease. I suffer from lower back pain I have 3 cysts they have grown to 1 cm in the last 10 months. i do not know what to do, i am lost. Sorry for what you are going thru I hope we can find a way to continue fighting.
    Thanks
    God bless you.

  4. Yaffa Finelt says:

    Hi. I recently found out I have Tarlov cyst disease. Is there anyone out there who has had surgery and felt wonderful after that. I would love to hear about yoyr experience.

  5. Pamela Miser says:

    Stacey, please come join our group of Facebook. We are very supportive of one another. Many in the group have had surgery and some have gotten approved for ss. Group name is Tarlov Cyst Disease. Look forward to seeing you there.

  6. Jack says:

    Hi I’m 25, live in England and I have cyst 3.5cm, between s1-s4, Symtoms are chronic pain, bladde and bowl disfunction, painful twitches, I have had this for around 8 months and I’ve had 5 mri scans, two ct scans, one spect ct scan and should find out a surgery date soon, I really feel for anyone with one of these nasty things, after surgery I’ll update how it went on here.

  7. Dana says:

    I need to have surgery on my Tarlov along with 7 ruptured disc in my neck and low back I am so scarred and the more I read makes me think there is no hope is there anyone out there that has had a positive experience? At this point I just want to give up. Please I’m looking for some hope here!

  8. Melissa says:

    Hi my name is Melissa. I have had this for about six months. I have five of these on the spine. Starting at 5mm to 8 mm and tonite I am I so much pain. Can’t sleep or sit without the pain. My upper and lower spine to my legs and arms. This is new for me and I’m looking for experience and advice. Heating pad is my best friend. Afraid how things are going for me. Thx

  9. Melissa says:

    This is a very painful experience. I pray there is something that can give some light on these cyst. Anyone with these needs all the help they can get.

  10. Hollyhock says:

    I is suffering from this painful disease I was diagnosed with a 17 millimeter Tarlov cyst on my s3 nerve root flattening it in 2007 since then no further MRI studies due to a pacemaker pain is severe

  11. Hollyhock says:

    I am so high sorry to hear about your condition..I 2 have a 17 millimeter tarlov in my s3nerveroot. Praying for u.Hugs+)

  12. lillianpulido says:

    I find out I have s tarlov ,1cm and my workmancomp dr says its nothing on my s3sacral area

  13. Ali says:

    I too suffer badly from TCD. My MRI came back with my right side at S1 /S2 measured at 18mm. The left L5 nerve root , maximal 8 mm. I have a terrific alternative physician I see for my pain every month until my pain is under control for about 5-6 months which i see him every 3 months, then out of control and then I see him every month. I’m on SSDI from prior cancer I had and the effects I had from my chemo which left me with severe neuropathy. My life is pretty sad, had to move in with my daughter and her family. I no longer am able to get out during the day for very long. I’m hoping the uofa can help me, leaving the state isn’t anything I’m capable of doing nor can I afford. Please pray for us all 《♡♡♡》

  14. Lisa says:

    Hi my name is Lisa and i had a Tarlov Cyst on my lumbar pressing on my nerves roots, i had the cyst removed a few years ago. The Neurosurgeon that operated on me turned one surgery into 3, I ended up with a spinal leak so he put a shunt in my back, then that malfunctioned and had to go back in and fix that and sew up the leak. I have been in severe pain ever since i think some days is worse than other. I use to be an outgoing person but now i just go to work and come home. I can’t walk, sit or stand for long periods of time. When i do go out and try to shop i have to sit to relieve the pressure. I have had several MRI’s done and my neurosurgeon kept telling me that they look good and couldn’t find anything wrong. I finally went to my primary physician and she ordered another MRI and today i received the results. I know have Lumbar Canal Stenosis! My curiosity is did this Tarlov cyst cause the stenosis?

  15. debi dennis says:

    Hello ,my names Debi and my heart is so heavy for all of you. I have been in on and off pain for a year and after a CT ,it was revealed that I have multiple sacral tarlov cysts . I’m scheduled for an MRI to determine nerve compression. I have lower back pain ,tailbone especially, butt and hip as well.odd shocks and burning in my feet … I’m incredibly active ,work on my feet as a beautician and in good physical shape otherwise. After reading about the extent of suffering and little help to relieve pain,including the fact that theres only 3 doctors leaves me so disappointed and honestly frustrated… I believe in the power of Jesus. I trust that God’s grace is sufficient… My only hope at this point seems to be an actual miracle. I feel like I’m in a nightmare. Has anyone tried cannabis as a treatment? I’ve never used it and wondered if it would help with nerve pain. Any help would be appreciated!!

  16. Cleo Torres says:

    Please help me … I have a turlov cyst on my S1 S2 today is one of the days that I can’t walk I am in so much pain. I try to exercise but every time I do i crash bad on my right side. I even had Total Abdominal Hysterectomy beacause the drs thought that the problem. Now I don’t know if I should do the Surgery I am scared. Is anybody out there that has the same issue?? The lower right of my abdomen and my right leg horrible hurts. Is the due to my turlov cyst? ? Should I remove it? ?

  17. Cleo Torres says:

    Hello Lisa who is the Dr the did the surgery?

  18. Patricia Newell says:

    Hi. I have several Tarlovs cysts. The biggest one is at T10. The pain has been progressively worsening ver the last 2 years and it take all my energy to work and cope. I regularly take codeine in addition to my anti inflammatory medication. I too live in England. Jack, if you read this please reply because I’d like to get in touch. The doctors I have dealt with seem unable to offer any proper support.

  19. Hello – I have been having painful urination since mid February 2016. I have also had pain after ejaculation. I have undergone multiple cystoscopies and ultrasounds but nothing was found. All organs appear normal. On a pelvic mri, a 7mm tarlov cyst on the s2 right nerve root was noted as an incidental fibding. I am really scared to think this could be the cause of my symptoms. Moreover, I am afraid that the cyst will only get bigger over time thus making my symptoms worse. Can anyone please let me know if this is a likely cause of my symptoms?

  20. debi dennis says:

    So sorry you are suffering. Absolutely yes it could be from cyst. After MRI,ct and syscopy noted at bottom of my reports they made mention of my 3mm cyst on same nerve . As well as many smaller cysts. this kind of pain is the worst I’ve experienced and I’ve had 2,children naturally with no drugs. I hope doctors become more aware that this nerve pain is very real and more money is made available for research. Praying for you, sincerely,Debi

  21. Laura Green says:

    Hello, I live in England and I’m 3 weeks post op after having my 6cm meningeal diverticulum (Tarlov cyst) removed as an emergency – after years of pain etc, and discovering the cyst I suddenly was unable to wee at all. I was taken into hospital and then transferred to London to the National Hospital for Neurology & Neuroscience under the care of Mr Adrian Casey. I had a two week stay in hospital due to complications but it literally is amazing, all my nerve pain has vanished and they managed to completely remove the cyst! It was done as an emergency under the NHS. I spoke to Dr Feigenbaum personally and he recommended Mr Casey as he mentors him – if you’re in England please seek him out!!

  22. Kam says:

    Hi Debi, glad you’re doing better. Where was your cyst located? Was it always 6cm or did it grow over time? Mine was just discovered and it’s 7mm on the S2 nerve root. I am in Canada so planning on the flying to the US to meet with Dr. Feigenbaum. Looking forward to hearing from you.

  23. Kam says:

    Hi Laura, my last comment was directed at you and mistakenly addressed it to Debi. I am really glad you’re doing better. Where was your cyst located? Was it always 6cm or did it grow over time? Mine was just discovered and it’s 7mm on the S2 nerve root. I am in Canada so planning on the flying to the US to meet with Dr. Feigenbaum. Looking forward to hearing from you.

  24. April says:

    Reaching Out to Stacey-
    I am April. Also DX w/ multiple Tarlov, inoperable.
    Post- trauma; rear ended by a car. I am undergoing the same existence as you. Now down to 85lbs +\-, can no longer walk and a minute to minute existence.
    IF you see this I’d like to communicate privately with you.

    I hope today is… OK.
    …and I think this is the most we can ask for! 🙂

  25. Lynne says:

    Hello everyone,
    I am in my mid 20s and have been dealing with numbness, pain, weakness and tingling in my lower back, legs and pelvis for 11 years. I have issues holding my bladder as well and have a lot of pain. These symptoms started taking over my life about 2 years ago. I have been to numerous types of doctors and never had a diagnosis until recently… They did an mri of the sacrum and found multiple cysts. My neurologist and rheumatologist told me this is rare, but after seeing results from my mri and nerve conduction test, they believe it is all being caused from the cysts. I was referred to a neurosurgeon and the appointment lasted a few minutes and he didn’t do anything. He told me he didn’t know much about the sacrum or reading the mri and that the cysts wouldn’t cause any of these problems and then sent me on my way… In no way do I want the situation to get so bad that I cannot ever come back from it. I am beyond frustrated and upset. These problems take a toll on me everyday and limit what I can do. Some days, I can’t even walk to go to the bathroom or stand long enough to make myself something to eat. I go to physical therapy to help strengthen my muscles, but it only does so much. I am in desperate need for good doctors!!! If anyone has any recommendations at all I would really appreciate it!!! After reading other people’s stories, I feel so much compassion and empathy for them. It also scares me that so many people go through this and there aren’t many good doctors out there to help. I feel for all of the people going through this and my prayers are with each and every one of you!

  26. Kam says:

    Please look up thr tarlov cyst institute and Dr. Frank Feigenbaum. Get in touch with his office and schedule a phone or in person consult.

  27. debi dennis says:

    Tarlovcystfoundation.org. Has lots of info….maybe you’ve already checked it out.I was diagnosed 6 weeks ago… I rely on Gods strength to get me through every day!! Life is rough right now. Hoping u get some answers,some relief from your agony… the problem is there is only three or four doctors in the world I believe that are qualified to do the surgery so I don’t think it matters what neurosurgeon you get sent to they just don’t have the qualifications to do this type of surgery. My chiropractor and general practitioner disagree on my treatment..chiro says adjustments ( which I do have herniations in L4&L5) doc says surgery… going to try everything I can to avoid surgery… . I’m so sorry your going through this…. blessings!

  28. Dee Edwards says:

    Hello, Dr. Frank Feigenbaum of Dallas, formerly Kansas City, performed Tarlov Cyst surgery on me in 2009, 5 yrs. after my pain began. I saw many specialists first to rule out other diseases. I had 2 Tarlov cysts on my sacrum, which Dr. Feigenbaum removed, and the Dr. also performed a lamindectomy to repair the eroded area of my sacrum caused by the cysts. Incidently, my sister also suffers from TCD and had the same surgery before mine by Dr. F. My insurance paid for mine, but we had to educate some of my doctors on TCD first. Most haven’t been taught in med school what Tarlov Cysts are. When you have an MRI, you need to ask that the tech and/or radiologist to focus on locating these cysts, usually around the sacrum. My post surgery results have been good, as I can sit and stand for longer periods. I still have pain issues, but I take pain meds that help. The meds help with rectal spasms and neuropathies. Do not be afraid of addiction if you are in intractractable pain. I have been told I will need to be on these meds the rest of my life. And yes, I have tried accupuncture, chiropractors, TENS, etc…everything! Distractions like beading, watching TV and movies in bed, meditation, and family visits help get my mind off the pain. Still, the surgery was well worth it, and Dr. Feigenbaum and his staff are wonderful! I would not hesitate to have the surgery again. Prayers and hugs to those suffering with TCD… Dee

  29. debi dennis says:

    Hello,im thankful the surgery has helped you. I have been diagnosed with several tarlov cysts,although my doctor feels my pain is being caused by my herniated discs .I’ve seen chiropractors,physical therapists,had massages,homeopathic doctors .I have pain every day…some worse than others and am considering cannabis.. I’m only 48. Have alot of burning and tingling with sciatica pain.is your pain in your back ? Or lower hip,tailbone area? Just praying for relief.going on one year since real problems began . Sorry so winded. Frustrated with those who think these cysts are always asymptomatic…. blessings ,Debi Dennis

  30. Gary Barnes says:

    Hello to all that have T/C. I hear nothing in regards to how the spouse/partner/other is dealing with this. My wife Denise, has T/C -T3-4left, T4-5 Right T5-6 Right and T6-7 Right. She has been in pain for about a year now and after a MRI which showed her that her T/C is about 1 inch long by .7 inch wide. Denise insurance does not cover going to Dr. F in Dallas and the only person that will see her is in Seattle, a Neosurgion (Dr. Delashaw) at Swedish Hospital. After reading several of the stories from Stacey, Lisa, Blanca, Melissa, Debi no one mentions how the spouse is doing with this. I know that as much as i care for Denise I will and do anything on earth to assist her, she is in pain most of the day. Denise insurance covers her meds but that is about it. At, 51 Denise life is slowly getting to the point that she is in bed most of the day. I am asking if anyone would care to write to Denise and I about there operations or to give Denise some incouragement would truly be appreciated. I do understand that you folks are in pain over the T/C and i am learning every day about all this, just trying to reach out to anyone that I can learn more from so I can be better at taking care of my Denise.

  31. Lynda Rex says:

    Gary,
    My name is Lynda I have had cyst problems since 2003, I have had 2 surgeries from 2 different Dr’s. Best bet is Dr. Feigenbaum in Dallas. He di surgery in 2013 on my 4 cysts. I am in my mid 50’s. I have posted prior to this on Stacey’s original post. I want to I feel for everyone dealing with these cysts, even the spouses. My husband is retired so we both know how it is to work while having these cysts & not working. I can tell anyone with these cysts to place ice pack over/on the area’s that you have pain. This makes the pain relax. I keep ice pack’s ready to go at all times. I learned this while in Hospital after Dr. Feingenbaum did the 2013 surgery. Also if you get headaches use a mouth guard while sleeping. My dentist made one for me because they saw I was grinding my teeth. That got rid of the headaches for me. You can buy cheaper ones on Amazon or at a sporting good or drug store. Just a suggestion on the insurance. It’s open enrollment now, I had United Insurance cover mine. If you join AARP you can get insurance cheaper. Don’t know you situation but that may be an option. I had my 1st cyst drained then repair the nerve, Dr. Feigenbaum said that that may have been why I had 4 cysts this time. He places a cows artery around the cysts so they can not erode the bones and help reduce the pain over time. I am willing to answer questions & give more info if needed. You can e-mail lytrex@sbcglobal.net.

  32. Tam Sue says:

    I have tarlov cysts in my lower spine, the thorasic spine and now in my cervical . On top of that fibromyalgia and sjogren’s syndrome , osteoporosis, osteoarthritis, and degenerative disc disease. I could go on but I’m sure many of you are in the same boat. Because of the fibromyagia they are not wanting me to try the surgery on the cysts. But now with the ones in my cervical my arms and hands are numb and yet painful. It is so hard to know what to do. I had a pain pump put in in 3 1/2 years ago and had to have it replaced already due to a malfunction. The pain pump helps my leg pain if I try to sit witn my legs up alot but then that irritatess my back. Anyone with an answer let me know.

  33. Kat says:

    I have just found out I have a 6 mm TC on right S2 from an MRI. It wasn’t even really commented on – just said “questionable significance”. I have awful coccyx pain (can’t sit for more than 15 minutes at a time), some sciatic pain, and pirifirmis spasm, but no other real symptoms as yet but after reading these posts I am feeling worried. I’ve never heard of these before and have been a PT for 31 years! I don’t understand why more is not generally known about them especially in the medical community.

  34. Debra Dennis says:

    Hi Kat, I feel your pain… Literally. It’s frustrating that the comments from diagnostics concerning the tarlov cysts….its as if there is no medical significance to them.. and yet it’s the very cause of our torment…They ( medical doctors) claim my pain is coming from a herniated disc, my chiropractor thinks it is from the cysts (I am unable to sit for longer than 15 minutes as well. Sciatica pain is getting worse.. it’s as if something very heavy is always sitting on top of my tailbone. Tried PT, nuerologists chiropractor,and massage therapy. I’m trying infared sauna next week.praying for relief. I’m almost 49. Been suffering for a year and a half. Trusting the Lord for healing , strength,wisdom and guidance. I will be praying the same for you Kat. Take care,Debi

  35. Ainul says:

    There might be hope for you guys to recover. Here’s my mom’s story. My mom had the same excruciating pain that you guys are experiencing. It started couple of years ago where she had pain on her legs, lower back and later her abdomen. She had difficulty to walk and do simple job at home. She had undergone MRI test, and the MRI imaging showed that she had a big lump on her S2. But of course, like some of you guys have experience, the doctor did not mention about it at all and told her to come back for other tests as the MRI gave lack of information.
    We went home and I finally got my chance to thoroughly read the MRI report. It was mentioned in the report that she had Tarlov cyst. I googled about Tarlov cyst and found that my mom had exact symptoms that a Tarlov cyst patients have. We went to see several other doctors to get second opinion. The doctors told us that the size of the cysts is quite significant (which definitely taking quite a long time to be developed) and it was most probably in my mom’s body since she was young. Since my mom’s had never had any of the painful symptoms before so they had to rule out Tarlov cyst as the cause of my mom’s agonizing pain.
    But I was very determined that Tarlov cyst was the cause coz if it’s other ‘normal’ illness, the doctors would have easily identified it and provide the treatment. All they said is they don’t know the cause and just prescribed painkillers which my mom would have to take probably for the rest of her life. As we felt that modern medicine might not be able treat my mom, we had gone to traditional practitioners to seek treatment. This helps a bit and my mom’s can finally walk but she still needs me to walk by her side most of the time.
    Her condition gets better (now she can do normal housework and looks so energetic) when she started to take a supplement weeks back, introduced by a former patient who was suffering the same symptoms as my mom (but I’m not sure if he had Tarlov cyst, but he had the same exact symptom like my mom’s). The name of the supplement is Cellmaxx. What it does is it activates the body cells to help the body to heal naturally. You can google the name to read more about it. I’m not sure if it’s sold in other countries besides Malaysia. If you’re from outside Malaysia, I can definitely help to buy and send it to you. I’m letting you guys know about this as I know how you guys are suffering so much just as my mom was suffering and I can see that the pain is unbearable. If you more info about anything, you can e-mail me at ainul.r.ariffin@gmail.com. I hope this post helps.

  36. Kitty Kilian says:

    My prayers are with those suffering from tarlov cysts. I was recently diagnosed with bilateral tarlov cysts. The neurosurgeon said oh I wouldn’t worry about those. I don’t no the size of my cysts. The pain is real, and keeps me from doin daily tasks. The medications including pain meds help, but I’m still having a lot of pain. I don’t no what’s in my future, it took many drs and about 3yrs to finally get diagnosed. Good luck to you fellow sufferers.

  37. santosh khatri says:

    Hi,i am suffering from Perineural Tarilov’s cyst from last 2 months..Its so painful that i can not stand for 30 sec..can’t even sit properly..I am 51 of age.I have been a Mountaineer who has climbed 6 peaks in Himalayas of 21000ft ant a Para trooper n regular trekker,Now you can imagine about me what all am going through now…So can any one advice me that should i go for surgery or any other treatment will work out?..Regards!

  38. Rhonda Crosswhite says:

    I’m wondering what y’all are doing out there since the majority of doctors are now afraid to prescribe pain meds and pharmacists don’t want to fill them?

  39. I take Gabapentin and Venlafaxine. I have 9 walnut sized cysts. I currently function as relatively normal with some days being quite tough but most manageable. I am dopey from the meds sometimes but just schedule when I take them. I used to feel like I had a flaming sea urchin up my rectum and my legs, back, and bowels were in constant, unrelenting pain. I have to take larger doses and have never even been someone to take Tylenol. I have to say that for right now it has saved my life. I thought it was colon cancer and had colonoscopies and other diagnostic procedures. They determined it was Tarlov’s and we began a pain management program. No opioids. Few side effects for me. Relatively normal life. Normal can include a few horrible day here and there. I also feel like I need to crack my back all the time but resist bending and twisting so I don’t errode my spine. Perfect? Nope. I don’t leap tall buildings in a single bound. But I can live without crying and desperately trying to do anything I can. I used to try enemas, heating pads, epsom baths, anything just hoping I would come across something that would work. The combination of the Gabapentin and Venlafaxine have really allowed me to live almost normal. I mowed the yard a few days ago. I can sit at work without pacing. I am not constantly agonizing and trying to treat symptoms. Pain management. Not a cure. Not surgery. Just being treated with something that gets me through the day. A big adjustment in the beginning. I don’t always feel dopey any more.

  40. Lori says:

    I too have several Tarlov cysts that were stated as being of no significance…yeah right!!! I not only have them in my sacral spine but my lumbar, thoracic and cervical spine as well. I fell down a flight of stairs in Dec 2016 and within 3 months my symptoms started and proceed to get worse and worse. I went to the ER after a couple of weeks of severe pain, vomiting & a lose of 25 lbs and since I’m 5’3″ 110 that it’s self is a problem. They didn’t even exam or touch me in any way but luckily my sister was with me and got some test and MRI’s ordered. After reviewing my results a neurosurgeon came in and said I was going to surgery but I got discharged with a 3 month follow up. Tried physical therapy 3 time’s and actually made it worse and I’ve been to neurosurgeon 6 times now and I just now a year later got referred to pain management. I’ve never been given any thing for pain only nausea medicine which doesn’t help. I can’t sleep, sit, walk, shower or really any thing. I no longer have a life and literally suffer 24/7. I asked the neurosurgeon about the TC and she basically told me that I was stupid and it had nothing to do with any of my symptoms but yet doesn’t have a logical explanation for any of it. She also told me that they DO NOT CAUSE ANY PROBLEMS!!! Really why doesn’t she take them for a week or two and see exactly how I feel. It’s ridiculously that we have to suffer from this ungodly pain that nobody truly seems to believe is real! I hate to hear that you all are suffering the way that I am but it’s nice to know that it’s not all in my head. Hopefully they will come up with something to help us before we have lost the total ability to function independently because unfortunately I’m knocking on that door and it’s terrifying!!!

  41. Hi , I completely understand, I have two Tarlov cysts. Please find a neurosurgeon , go online Cl him out first find the best one, then write to him at explain everything, be sure to send ur tests and diagnosis. You want to ask the neurosurgeon to already see u pro bono (for free) all doctors must do a certain amount of free treatments and exams every year. Just ask him to see if or his diagnosis and recommendations. Hopefully he will do whatever necessary to help you. Nothing but the best you. I just summit red a probono to University of Penn, I have suffered to long, I got fix me sleazy try. These SOB Doctors only care about money, but the real ones will help u. Esp. Universities, the are the best place mail ur request to Neurosurgery Department. Anyone else suffering take my suggestions, we have nothing to lose, and can only gain . Good luck, Iam praying they agree to c me.

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