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    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
    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.

    Comment


      #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

      Comment


        #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

        Comment


          #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

          Comment


            #6
            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

            Comment


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


              AAD
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

              Comment


                #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

                Comment


                  #9
                  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".

                  Comment


                    #10
                    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; 21 Sep 2011, 2:02 AM. Reason: doubling up on reply

                    Comment


                      #11
                      Wish i could meet a neurosurgeon that would just speak his mind

                      I posted above a relpy to Edi Wagners email to me about spinal dural fistulas, (hope thats cool with you Edi), I dont mind if a doctor simply just does not know but im getting the shits with them because as my condition is slowly deteriorating, they wont give me any advice, for example, can i push myself in physical activity. I do not look at doctors as gods and realise they are human beings that dont have all the answers. Bloody hell, im extremely gratefull that i can still walk, thanks to their sacrifices in spending years studying to be a doctor then surgeon, but me thinks that australia is embracing to much american litigation culture and i get the feeling that the dont talk straight with you when they may not have the answers for fear of people suing them. Fuck the low life ambulance chasing lawers in america and australia. I beleive that i would have a far greater understanding of my condition if doctors were not afraid to openly talk straight with you. sorry for my attitude but im not even upset that i have this condition, thats just the hand of fate, but why the fuck cant australian doctors say they dont know if they dont know or even tell you their gut feeling about a condition, cheers all

                      Comment


                        #12
                        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; 21 Sep 2011, 2:07 AM. Reason: doubling up on reply

                        Comment


                          #13
                          On November 20th will be 2 month from surrgery

                          hi Mick,

                          On November 20th will be 2 month from surrgery.
                          Some capabilities I've gain back like blader function and some walking improvment.
                          I think is to early to draw an conclusion. I'll be back with news after 6 months.
                          see you
                          edi

                          Comment


                            #14
                            Hello,

                            I forgot to post some news . After 6 month at MRI scan, there were improvements.
                            Myelopathy area is gone, though spinal cord is somehow twist and slightly compressed in thoracic area.
                            I managed to walk continuously about 2 hours at an pace of 4km/hour ☺, last month.
                            On 20 September will be one year from surgery. Still I’m not able to run even if my life depends on it, I’m very glad with what I’ve got.
                            Hope that you are doing well Mick.

                            Kind Regards
                            Edi

                            Comment

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