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Thread: spinal dural av fistula

  1. #1

    spinal dural av fistula

    HI ALL :
    My names michael, 49 years, live in Queensland, Australia.
    SHORT VERSION: never been ill or injured in my life, walking along and all of a sudden, my legs stopped working, (no pain ) on 12-25-2010, to hospital in brisbane, had embolisation,legs working again, one month later, had laminectomy. pins and needles increase and legs get extremely weak when i walk for a few minuets, however, when i ride my motorbikes, symptoms dont get worse, only when walking, if someone, outside australia has had a spinal fistula similar to me, i would like to email you to ask about your symptoms and treatment you received and compare as surgeon here says he does not know if i will ever improve or not. as such i cannot work with this condition,
    my email is michaelobrien5555@hotmail.com
    sure would appreciate any help or reply to this.
    cheers mick

  2. #2
    That was my diagnosis -- (t6-t9)
    No embolisation possible for me -- Had laminectomy to clip the offending AVM, but my condition only worsened (probably due to swelling, ischemia, etc) Currently wheelchair bound, but doing fine. It probably would be very hard to know if the damage was reversible w/ surgery, etc.

  3. #3
    Thanks 5th wheel, for the reply.
    I have just had another angiograme and mri scans as my symptoms are slowly getting worse, doc said scans showed fistula repaired, and sent me home stating that i should wait and see what happens. When i ask questions of the docs, they seem to answer in a vague and unclear manner, I note that you are wheelchair bound but doing ok, so my question is,
    what have your docs said about your ongoing care and future management of your condition, ect ect,
    thanks again friend
    mick

  4. #4
    Greetings Mick ---

    I'm no neurologist, but my assessment of my situation was that I had temporary or possibly permanent damage before surgery (I could barley walk, foot drop on one side, pain ), and that the permanent damage was done during (or most likely) after surgery with the resultant swelling. My surgery was 9 hours, and quite invasive. The outcome, though not desirable, is a likely consequence of messing around on open spinal cord tissues -- I had no choice as I would have arrived here or worse if left untreated. I am 6 years post and seem to have stabilized and am a strong para. I do have pain daily but it's manageable.

    As for your situation - if they truly killed the AVM with embolisation and follow up, I would think your symptoms in the worst case would stabilize, and possibly improve as the edema and ischemia reversed (depending on weather there was myelomalacia or necrosis of the cord tissue). If your symptoms are getting worse, I would seek out another opinion - could they have possibly missed an offending artery? Also, it was unclear from your post -- did you have surgery? Symptoms of post surgical swelling can last 6 months and then improve if no permanent damage was done.

    Best wishes on this -- don't give until you get an answer.

    Scott

  5. #5
    Hi Scott
    yes, had surgery a month after embolisation, slowly improved but then got worse over a few months and slowly getting worse. perhaps post surgical swelling has some effect,anyway, thanks heaps for you input
    appreciate it
    cheers mick

  6. #6
    Junior Member
    Join Date
    Sep 2011
    Location
    Romania, Timisoara
    Posts
    4
    Hi Michael,

    I'm 40 and diagnosed with Spinal dural arterio-venous fistula on t8-t10 they are not yet sure.
    On monday I'll go to surgery .
    I'll keep you inform about my health evolution.

    kind regards
    edi

  7. #7
    Thanks all. Hopefully, mick, you are keeping active with physical therapy to strengthen and maintain what you can.


    AAD

  8. #8
    Hi All,
    I was diagnosed with a spinal AV fistula, after 8 years of progressive neuropathy. Embolization was done in June of 2006, after 4 unsuccessful attempts. A type of super glue was used during embolization. The edema on the cord was reduced, by evidence of post procedure MRI. I had a slight recovery after the embolization, but by then I already had deficits. I am a 67 year old T-11 incomplete paraplegic with associated B&B issues. Five years post, I'm doing very well.....lots of handcycling and recreational activities. I never needed a surgical procedure, just the embolization.

    If you are still walking, then you are doing well. Waiting to see what happens, is not appropriate in my opinion. You need to engage your doctors for more answers. Spinal AV fistulas are very rare and only a few doctors in the US are knowledgeable as to treatments. The Barrows Institute in AZ is very good, especially Dr Spetzler.

    My very best to you.
    In the dime stores and bus stations, people talk of situations, read books, repeat quotations, draw conclusions on the wall. ......Bob Dylan


  9. #9
    Junior Member
    Join Date
    Sep 2011
    Location
    Romania, Timisoara
    Posts
    4

    Uff this waiting is hard to cope with ....

    Thank you very much for your post.
    You gave me some peace of mind (this is what I'm struggleing right now to keep).
    I'm still able to walk, although not quite well, as I can't feel at 100% my feet in the lower part.
    The hospital which I'll go to - SZTE ÁOK Idegsebészeti Klinika from Szeged ,Magyarország, postpone the operation by 1 week (I should be there on 19.09).
    They need a new investigation. I asume this will be "Catheter Angiography".

  10. #10

    Cool My Response To Edi Wagners Email

    Hello Edy
    thanks for your email response
    Sorry i have not responded before today, my computer email has not been working and shows it sent mail but recipients do not receive it.
    Hopefully all fixed now.
    How did your surgery go ??
    The reason i went on the forum is because i get the same responses from doctors that you have been getting. They dont answer me with any sort of answer that makes sense. I think that they just dont know. with me they first placed glue up into fistula, worked for a while then got worse. They then surgically seperated fistula. Again worked for a while then got worse to a certain point and has stayed at that level. I can still walk around but the more i walk in one go, say 120 metres, the pins and needles and burning in the legs gets worse to the point i have to stop for 1/2 hour, then i can do it again. Sometimes when im sitting on the floor, i have to use something to pull my self up to standing. I ride large motorcycles and the condition does not get worse, Even the vibration on the motorbike does not have any effect on on the condition, only when walking. Doctors give me no advise.They just say come back if condition gets worse. I asked about how much should i push myself. They say to do what ever i feel i can do, but they have no advice on what is too much or to little.
    Hope your op went well
    all the best
    mick
    Last edited by mick7211; 09-21-2011 at 02:02 AM. Reason: doubling up on reply

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