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    Old 12-27-2007, 11:28 AM   #1
    stef814
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    Tarlov Cyst

    Just looking for others who are dealing with this. I have had pain for over a year, no dr. caught this. Went to the ER thinking it was kidney stones in September since I have a history of them...not kidney stones.
    Started physical therapy for a "bad back" till they found a 4 cm tarlov cyst on the "s2".
    Had an EMG done that shows some nerve damage around the cyst area. Going to see a neurosurgeon at the University of Pennsylvania since I live near Philly. However they say these surgeries are not that common and not done.
    I am going for a spinal injection today to help with pain since I am on percocet every 6 hours.
    this is has changed my life. I do nothing but lay in bed on heat an take pain medication, I can barely walk since it effects my leg also.
    I am only 28 and don't want to live like this.
    I am eager for the surgery as crazy as that sounds....
    Please share stories...advice??....

     
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    Old 12-30-2007, 03:49 PM   #2
    Lilacs&Lillies
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    Re: Tarlov Cyst

    I have been dealing with 3 large Tarlov's Cysts for 5+ years now. My neurologist felt they should be removed, but the NS I saw back then scared the bejeebers out of me. Said surgery on them is like sewing wet tissue paper and I could end up needing a shunt, have a chronic spinal fluid leak, etc. and end up worse off than I started out with. I let it go at that and have lived with it since then.

    Last year, I saw a pain management doc for ESI and he said my cysts are the largest he's seen and advised another neurosurgery consult with a different NS, since he feels they are eroding the bone. I don't want to have surgery until I am certain it's worth the risks. They do effect my quality of life, but so far I am able to get by with only Darvocet. I can't imagine trying to function on percocet every 6 hrs.

    I hope your spinal injections helps you. Good luck with your NS visit. Please keep us posted.

    Lilly

     
    Old 01-04-2008, 08:20 AM   #3
    stef814
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    Re: Tarlov Cyst

    Hi Lily: (that is my persian cat's name and my best friends soon to be newborns name!)
    Thank you for your input. how large are your cysts? Mine is 4 CM, and my pain management dr. said that is the largest he has seen. I don't want surgery but my life is horrible right now. It could be worse but I cannot live a normal life at age 28. It has effected work, relationships.
    I am allergic to darvocet. Does it help the pain for you?
    I am seeing the NS on the 18th.
    The epidural did not do much since the flow of meds could not get through very well since the cyst was so large blocking it.
    I have already been told by the NS over the phone they do not do surgeries often. But I am hoping when I see him he will understand this is not an average case and I am not one of those people that finds something out and wants it removed just because.
    I have heard there is a Dr. down at Johns Hopkins that deals, but I don't know what my insurance would cover.
    So you are still living with them?
    Are you able to work? How has it effected your life?

     
    Old 01-04-2008, 09:54 AM   #4
    Lilacs&Lillies
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    Re: Tarlov Cyst

    Hi Steph,

    I don't know that my MRI report mentioned the specific sizes of mine. (I'll have to dig it out and look.) My family doctor is an osteopath and he feels at least some of my symptoms are due to piriformis syndrome, and had me persue P.T. to see if that would help. That was a whole new ball of wax though, because the physical therapist said my pelvis is very out of whack and she worked like crazy trying to get things more even. I have had a minor leg-length discrepancy all my life, so there was no fixing it and the only thing that changed was the balance in my checking account. It was worth a try though. I did learn some good stretching exercises from it.

    My insurance changed and my PCP sent me to a new neurologist, < who did nerve tests on my arms and legs which showed peripheral neuropathy. How much the Tarlov cysts are contributing to the PN, Piriformis syndrome or sciatica is unknown.

    Anyway, living with them, for the most part, means avoiding triggers, taking NSAIDs pretty regularly and pain meds when I have to - which is often. My actual back doesn't hurt like I think most folks think of with typical back pain. Instead, it is a very intense pressure in my sacral area. Like I wish I could cut a window and let the pressure off. I can't tolerate laying on my back or my right side at all. When I am up, or sitting, I have sciatic type pain down my leg and burning to the bottom of my foot - that's what usually makes me go for the Darvocet. It doesn't make it go away, but it makes it more tolerable.

    Pain meds make me itch, so it's a trade off - do I want to hurt or itch? I've had great concerns about using presciption pain meds long term, afraid of what that could lead to, so I limit myself to Darvocet even though stronger meds have been offered. Once I accepted that this may be my fate, I have been better able to get on with my life. Quite honestly, part of my acceptance has come from being tired of chasing hope that something could be done for me. I haven't given up hope entirely - but I did put it on the back burner.

    I will say prayers for you that you find a solution and much needed relief. Keep in touch.

    Lilly

     
    Old 01-09-2008, 11:40 AM   #5
    stef814
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    Re: Tarlov Cyst

    I am hoping they do the surgery. I am in such constant pain I can barley stand it. I cannot do anything normal and I am so depressed and always crying because of the pain. I can't imagine them doing "pain management" only on me?
    I can barely walk.
    My EMG inidcated nerve damage in my "glutes" - i guess that is the area.
    I hope you feel better soon too.

     
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