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

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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Global Genes Comments

  1. 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

  2. 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?

    • 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.

  3. If the patch doesn’t improve consult a dermatologist so they may make
    the right diagnosis. This herb is popular, both naturally
    along with the form of herbal medications.
    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.

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

    • 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!

  5. 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 ..

  6. 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.

  7. 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?

    • 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.

    • Lisa W. says:

      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.

  8. 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.

    • 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?

    • 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.

      • 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: Have cysters that you know that had AFGI said differently?

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