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Forum Virgin All Over Again

AnonymousUserAAnonymousUser Posts: 49,322
edited 06/11/2012 - 8:22 AM in New Member Introductions
Hello, it looks like everything has been done over from scratch since I last visited. I think my username is the same but I had to re-register.

I had/have a spinal dural AVF or AVM that I had surgery for in July 07 - when I didn't get better, the surgeon acted very weird, wanted to re-operate in the same place, etc., but never made a cogent case for what he was planning to do, just bullied me to get me to go along. I got 3 second opinions (okay, I got a 2nd, 3rd and 4th opinion) all saying I should probably go along with the surgery he recommended, and no, they would not take the case.

So fast forward 4 or 6 months and I have gotten my HMO to refer me to EDITED, where they do a lot of these. New diagnostics, state of the art, and it turns out the place where I had the first surgery is not even the location of the AVF! So not only was the first surgery a wrong surgery, the recommended second would have been too, all the risks and no benefits.

I am going back to EDITED tomorrow for surgery the day after in the actual location of the lesion - the iliac artery. Hopefully I will get better now, although the 1+ year delay in correct diagnosis and treatment may have cost me some permanent decline in gait and bladder function.

I'm trying to waste no energy being angry, but to reserve that for if and when I sue the ******* who did the first surgery (Is this kind of talk allowed here?) who by the way is currently in a jury trial for malpractice one county over, so clearly I'm not the first to have "issues" with him.

Thank you for listening. I may not post anything for a few weeks until I get back from Rochester, MN.


Doctors name and contact details removed by forum Moderator (paulgla). We do not permit publishing specific doctor's or institution names and contact details.


  • Anne , it is good to see that you made it over to the new site. I am so sorry that this has happened to you but I am so happy that atleast now you know and are on the road to being taken care of properly. Please do post when you can to let us know how you are doing. You will be in my thoughts and prayers and I wish you the best. Remember that you are not in this journey alone , you have all of us with you. Take care.....Miki
  • Hi miki,
    I need to ask how i can get to know exactly whats happening regarding my back?, the orthopedic surgeon will not disclose information to me.

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  • :) hi and welcome to the new forum! we are still here to offer you support and answer what questions we can. good luck on your upcoming surgery and keep us informed when you can! don't let the stress of a law suit cause you even more headaches! :T Jenny :)
  • Glad to see that you made it here! I am so sorry that you have had such a horrible surgical experience. I guess it really goes to show how important it is to get a second and even third opinion and to check the doc out as thouroughly as possible preop. Even though these things don't always work it is a good reminder to us all that it should be done. Good luck tomorrow and please post when you are able.
  • Thank you for your kind thoughts, everybody. I have been to heck and back, but you all know about that journey so I won't go into the details.

    With much more thorough diagnostics than I got from my HMO, the EDITED doctor finally localized my rare arteriovenous fistula (AVF) in a place where they are rarely found (left S1 nerve root, off the iliac artery, or something like that). Well never mind how common it is, there's nothing like operating on the RIGHT SPOT to cure a defect!

    Surgery was September 3 so it is barely 3 weeks since the operation, but I am walking better with my walker than I was prior to the surgery, have decided I can get by without the ankle-foot orthotic (and good riddance), and am going in to the office to work for 2 or 3 hours tomorrow and every day next week - assuming I can tolerate it. I did drive two days ago and handled that well. Was off the narcotics a couple days prior to that (i.e., under 3 weeks post-op). I'm getting by on only Tylenol and ibuprofen currently (when I say "only," that doesn't count the gabapentin and Cymbalta I take daily for fibromyalgia pain).

    I had a notable toe-drag/foot-drop prior to surgery on my right leg, and now, it is practically gone. I am afraid to believe, but it looks like the surgery may actually have addressed the root cause. Wouldn't that be amazing?

    My home-health physical therapist is doing some good ankle exercises with me and is very encouraged by my progress, as I am.

    If anyone searches the forums for "spinal dural AVF" or "spinal dural AVM" I would like to be a patient resource for them, because this thing is kind of rare, but I don't know if I am allowed to give out my email, and I don't come here everyday. Does any body know what I should do?

    Thank you to all who sent prayers, good wishes, and encouragement, and thank you especially to ***********EDITED************

    Doctors name and contact details removed by forum Moderator (paulgla). We do not permit publishing specific doctor's or institution names and contact details.

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