Tarlov cysts disease/my name is Stacey

The dr.'s found 3 cysts growing on my spinal nerve roots by my sacrum, the dr.'s said not to worry there is nothing they can do for those, so I thought nothing of them; because I was having really sharp siatic pain going down my legs; well 4 neurosurgeons later dr Kabins from Las Vegas, NV said my tailbone was severly shattered I had surgery in september, 08' took 5.5 hours thinking I was going to be fine, my pain and walking abilities became worse, so I decided to look back on my MRI from 07' it read tarlov cysts, I googled it and the symptoms came up that I was having, so I had another MRI done recieved my report 2 days later my cysts have grown from 15mm to 20mm I'm learning they erode your nerves and bone away and there is only 5 neurosurgeons in the United States that will do surgery to slow the progression of this disease. I had to file for SSI due to obvious reasons. I feel like a prisoner in my own body, as I was a very outgoing person, now it's sit and wait.
I recieved the letter from Dr. Feigebaum from Dallas, TX. he wants to do surgery ASAP I had to tell him I'm waiting to get my SSI when I spoke to him on the phone, I have to have two surgeries he said my pelvic is filled with cysts, and the tarlov cysts have been eroding my sacrum bone away. the surgery will take 4 fours, 4 days in hospital, then he wants me to stay in Dallas for 8 more days to make sure I'm not paralyzed, 18 months to heal. then I go for my other surgery. I'm just hanging in there have a great day everyone you can also find everything you need or want to know on tarlovcystfoundation.com

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Good Luck Stacey, I live in Australia where we have no experts on Tarlov Cysts, you are really lucky there are surgeons in the US that can help. My cyst is 6.5 cm by 4 cm big, I get full leg numbness in the mornings and decreased sensation in my left foot as for the pain well you know what that is like, I too have a severely eroded sacral bone, this cyst has been there for some time. I used opioid pain relief, which is not ideal when I have to work, which is in Critical Care as a registered nurse. Otherwise I use TENS
( transcutaneous Electrical Nerve Stimulation) therapy, which I think really works ( only temporary relief though) but some relief is better than no relief. I really do wish you luck and maybe someday a Doctor in Australia can help people like me.

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Thanks for sharing, I'm a medical assistant, i can't work anymore. do you have health insurance? is there any way for you to fly to the states? I have no insurance, I had to start a fund raiser account through my bank. Did you go on the tarlov cyst disease foundation site? the president of this foundation is a nurse also with this disease, she's had it for 20 years. I look forward to hear from you

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HI CAN YOU TELL ME WHO THE PRESIDENT OF THIS SITE IS, YOU SAID SHE HAS HAD THIS DIEASE FOR 20 YRS, ? THANK YOU, IN CHRIST GRAMY

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Hi Stacey,
Yes I do have health insurance, I have given surgery considerable thought, but I decided while I can still work everyday I have decided to leave the cyst alone, I am about to put my kids ( 3 & 5 years old) through private school, my greatest fear is that I won't be able to work, I want the very best for my kids and to do this I must work. So pain relief it is for now, TENS therapy really does help. Also thanks to this website I have been in touch with another person from Australia who knows of a specialist in Sydney, if I ever go down this path.
What amazes me is some days i feel great and others are dreadful, this is what is so frustrating. The worst thing is when I am grumpy with my beautiful children because they make a mess with their toys and my back hurts so much I can't pick them up so I yell at them, these are my low days and I feel so bad for yelling at them, I try so hard not to take my frustrations out on my family, they are truely wonderful patient people. I am sure everyone knows exactly what I am talking about.
Thanks for your advice Stacey, I had looked on the Foundation website, I did not know the founder was a nurse. I wish you well.
OzMum

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