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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. 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
    http://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

  2. Daryl Ann Gordon says:

    Time for surgery or not

    1. Daryl Ann Gordon says:

      Dr Fegenbaum good?

  3. 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

  4. 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 ☺

  5. 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?

    1. 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

  6. 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

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