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Thread: Question for a doctor about AVM

  1. #1

    Question for a doctor about AVM

    For the past 8 out of 10 years I have been in and out of a wheelchair due to leg weakness. It was not until about 5 years ago I was diagnosed with spinal AVM. They could not do surgery because of the location and that it was for fear of rupture and was too dangerous so they left it alone. They said it appeared not to be very big. At the same time I found out that I had a bacteria that was attacking my nerves in my spinal cord. They got rid of the bacteria and I could walk better than I could in a long time! I have not used a wheelchair for 2 years now! However lately I have been feeling fatigue and in the last 2 weeks my legs have gotten a little weak but not much (worse when I walk around a lot). I went to the doctor who ordered an MRI. They said that the AVM had gotten a bigger and looked like it could rupture. However surgery in still not an option due to the location. They said that if it ruptured it should clot but would more than likely leave me a paraplegic... They told me to not walk as much as I could and use the wheelchair for most of my "walking." They are hoping that the AVM will decrease in size with just rest. However I cant find anywhere online that this is the right protocol? Have you heard of someone be put in a wheelchair to treat AVM? I have been to several doctors and they all say about the same thing... I just can't find this protocol in any of my research? HELP! Thanks.
    I have AVM(artery vein malformation), some leg weakness, use wheelchair some of the time.

  2. #2
    This doesn't sound like anything that can be diagnosed over the internet.

    You don't mention exactly where the AVM is, but from what the doctors are telling you, it sounds like it might be in a position where they feel that surgery would be worse than leaving it alone. Surgeons like to cut, and if more than one of them don't want to they probably have a good reason. Perhaps they feel that any surgery to correct the AVM will leave you a paraplegic for certain, so there is no point in doing the damage now with a scalpel rather than waiting to see if/when it ruptures.

    I would definitely get another appointment with one of the surgeons who you liked the most and ask them pointed specific questions about why they are recommending what they are and the evidence for why they are doing it.

  3. #3
    Also, there are surgeons who specialize in CNS AVMs (most are neurosurgeons, some vascular surgeons). I would want to get a referral to one of these specialists and go see them, even if you have to go out of state.

    (KLD)

  4. #4
    I agree with KLD. You have something that is pretty rare, but there are specialists in this. You need to save up for a plane ticket to go see one of the experts specifically for spinal AVMs. I suspect that there is someone who can treat it, with less risk.

    I strongly recommend UCSF Interventional Neuroradiology doctors. They are known as being among the best in the world, and they do a lot of surgeries using minimally invasive techniques. You want to only have a doctor that has done A LOT of these repairs doing yours. These UCSF guys are amazing.

    Start collecting your records, copies of your scans on CD from your current doctors/hospital, and call these guys and make an appointment. What a great excuse for a vacation in San Francisco! You could even ask them if they ever do consults remotely.... maybe you mail them your scans/records, and they give you and opinion about whether they think they can repair it... and then you come out.

    http://www.ucsfhealth.org/clinics/ne...nal_radiology/

    In general, AVMs do not decrease in size... they get bigger. So it is better to treat it now while it is smaller rather than wait and do it later.

    Go.

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