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Thread: First post for Dural arteriovenous fistula recoveree

  1. #1
    Member harpo2's Avatar
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    Sep 2006
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    Lismore. NSW. Australia.
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    First post for Dural arteriovenous fistula recoveree

    Am post op 3.5 months after DAVF at T10 level. Wanted to drop details in if any help to others and find similar others for their experiences.
    Prior: Pain in both feet while standing, buttocks and inner thighs while sitting, increasing electric feeling in skin of legs, overactive bladder (initially prescribed as prostatisis and had TURP 8 weeks before DAVF op), slight balance loss and limp.
    I am not blaming anyone, just stating what happened. Went through the whole gamut of relevent body trades (physio, podiatrist, 3 general practitioners, X-Ray, ultrasound, blood tests, osteopath). Nothing wrong. Eventually had to directly request referral to a neurologist who found the problem in an MRI. Whole process took 10 months from onset of difficulty (straining to wee at night).
    Post op: Slowly improving with balance/limp. Everything seems like a rewind of symptoms that existed at the time of the op. Seem to be at the point approx 3.5 months prior to op.
    I get my pain mostly when pressure is applied. So feet are painful (5-6 on range of 1-10) when standing/walking, buttocks and inner thighs when sitting (5-6 on range of 1-10). Better in morning after sleeping on side. Still having trouble with over-active bladder - strain to wee, frequent urges, wake often during night and can't get back to sleep Prazosin and/or ditropan seem to have no effect. No pain relief from amitriptaline. Am trying other drugs and acupuncture. Noapparent effect buttoo early to tell with these yet.
    Is there anyone out there with post op pain? I am getting over the depression stage but am interested in what experiences others are having.
    I am moved by others with much more problems with pain and mobility getting on with things and am grateful that my condition was arrested fairly early by competent diagnostic imaging.
    Please give me some feedback if affected by DAVF or similar induced myelopathy.

  2. #2
    Senior Member
    Join Date
    Jun 2005
    Location
    Norway
    Posts
    17,427
    Hello Harpo2,
    Sorry to hear about your problems with the AVM. Those can be really nasty things. I had an AVM around Th4 level which also was situated intramedulary. I had finally surgery to remove it in 2002. The surgery curtailed the negative trend I was in but the AVM left me incomplete paralyzed from Th4. I guess I got some better as for motor functions just after the surgery but everything is stabile as of now. I also have some pain referred to as neuropathic pain; it is on my right side, from Th4 and down to the groin area on the same side. The pain is liveable for me and I have found that Neurontin (Gabapentin) 3x600mg/day helps a lot to control it. No side effects either from it, so I’m happy for that. My bladder is pretty good, not over active although I have to go to the toilet more often than before. My biggest problem is the bowel system, which is really a pain in the %&&. As for a over active bladder I am not to sure how to handle that since that has not been to much of a concern for me but in the forums care section there are many discussions on that subject, maybe you can create a new post and ask your questions there as well? There are some very good SCI nurses here on this site that can answer you plus many members with similar problems. Hope this helps.

    Leif
    Last edited by Leif; 10-17-2006 at 09:00 AM.

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