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Tarlov Cyst

AnonymousUserAAnonymousUser Posts: 49,578
edited 06/11/2012 - 7:22 AM in New Member Introductions
Hi Butterbean here, ;)

I have had severe lower back pain for 2 yrs,11 months. Im only in my late 20's. Cannot socialize. Cannot do much. Cannot live life being in constant pain. Have to have assistance when shopping for groceries (cannot lift shopping bags or bend over to take items out of trolley & put on "conveyerbelt" to be scanned- too painful) Trammal pain meds help a bit but wishing, hoping & praying the pain will go away 1 day. :W
Only abnormality that shows up on MRI is a 5cm Tarlov cyst S2 or S3 region of lumbar spine. Nerosurgen tells me its just a coincidental finding. I have noticed other forum members have also been told the same thing about their Tarlov Cyst/Cysts.
A Mylogram was performed & showed CSF in cyst was in communication with rest of CSF in spinal chord. Back specialist/Othopedic Surgen told me to come back 12 months later for a 3rd MRI "to keep an eye on it".
I Try to put on a happy face because I dont want my family, friends & my partner to pity me, because I wish I was still a strong independant woman like I used to be (and hope to be again). I walk around slowly & haunched over like a much older person because of the pain (no offence to the elderly). I cannot sit up in most cars so I have to lie down on the back seat, this has been the case for 2 yrs 8 months. Difficulty standing, sitting, walking & even lying down (but to a lesser extent). :''(
I would love to hear from other people who understand what its like to be in constant pain,from others that also have a Tarlov Cyst, or from anyone else. I havent worked out how to reply to other tarlov cyst sufferers posts yet, but I will reply to them once I work out how. Thanks. >:D<
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1

Comments

  • The pain that you are describing is exactly what I go through with my facet joints. Has anyone mentioned possible arthritis in the facet joints to you? Of course, I have never had a cyst so maybe the pain is the same.
  • :) hi and welcome to the forum! we are here to offer you support and answer what questions we can. i am so sorry to read of your constant pain. it seems like you should be trying some stronger pain meds. do you have a pm? there may be other conservative treatments that could help you. what about pt? please keep us informed and know that you are among people suffering just as your are. ~X( you are not alone! Jenny :)
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  • I too have a tarlov cyst. I think it is at L5/S1, but not positive. my doctor doesn't seem to think that any of my symptoms are related to the TC, but I DO think that the symptoms could be from it. It's like, when I first learned that I had the cyst and looked it up, many of the problems I was experiencing sounded like the symptoms associated with a TC. I asked many people on a different forum what kinds of symptoms they have experienced and mine were much the same. I haven't had a follow up MRI in over a year, but now I have a spinal cord stimulator ad will not be able to have any MRIs.
    PM me if you want to talk more in depth about symptoms that you might have and we can compare! Welcome to the forum! ">image
  • Hi Butterbean, welcome to SH. That is a huge cyst. Have you considered getting a second opinion, perhaps from A NS, especially since this type of cyst is very much a nervous system issue as compared to a bony issue? Good Luck and keep us posted. No one should have to suffer as you are. I hope at least you can get some better PM to get you through. God Bless, Sue
  • Hello trater, thanks for your reply.
    Yes, I too looked up symptoms of the TC when I was first told, I thought it sounded a lot like my symptoms. Especially the feeling of pressure in my pelvic area. I get a lot of headaches too. I have read this could be related to the spinal fluid changing. I will pm you later & we could compare symptoms, I cannot sit for very long before its just too sore to put up with.
    --------------------------------
    From Butterbean
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  • Hi and thanks for your reply. Would this condition show up on an MRI? I will ask othopedic surgeon, I have appointment in about 2 weeks. Does cold weather seem to make your pain worse? It does for me. 8>
    Best wishes from Butterbean
  • Hi lulusheart,
    Thankyou for your reply.Yes I have been thinking of asking Dr. for stronger pain meds, however, MS Contin (morp sulph) seems to always give me a migraine. It was prescribed to me but all 3 times I took 1 I got a realy bad migraine, so bad I couldnt even talk properly. Sorry but I dont know what a pt is. Yes I take 200mg SR Trammal,takes the edge off the pain.
    I realy hope your pain improves :)
    From Butterbean
  • Hi Cali-Sue and thanks for replying to my post.
    In my Orthopedic surgen appointment coming up in a couple weeks I going to ask to be referred to a different Neurosurgeon than the 1 I saw all the other times, for a 2nd opinion. Did you mean another Neurosurgeon when you wrote "A NS"? The cyst is eroding away my last vertebrae but I was told by NS I would be "ok structurally"...
    Best Wishes from Butterbean. :)))
  • butterbean and trater- I found out that I had a Tarlov cyst that was noted as an incidental finding. It is in the sacral area and just described as small (or very small??) without any actual measurements. I do not think it is painless as I have lots of pain and the pelvic pain I believe may be due to this cyst. It is often nauseating, dull, sharp and feels like pressure. I have to hold my breath due to pain and it prevents me from having an active lifestyle. It really sucks... ~X(

    PM me if you would like to compare notes. I also have a lumbar lipoma and a tethered cord that was released during a surgery. So now the dr says I have TCS-tethered cord syndrome post surgery. I just found out the lipoma is 2 cm which is about the size it was when I 1st had surgery years ago. :S jade
  • Hi Jade,
    Thanks for reply
    I have sent you PM, so we can compare.
    From Butterbean.
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