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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. 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?

  2. 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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