Living with AVM

Discussion in 'Community' started by rainman::|:|, Mar 30, 2005.

  1. rainman::|:| macrumors 603

    rainman::|:|

    Joined:
    Feb 2, 2002
    Location:
    iowa
    #1
    When I was 18, I had a grand mal out of the blue, and testing revealed an enlarged blood vessel deep in my brain. Because it didn't appear to be very large, and the arterial walls seemed thick enough, I was told to stop consuming caffeine and I should be fine. Cut to Sunday morning, I had two more grand mals. Wound up in the hospital, where they finally did a radioactive MRI as well as EEG and CT. Preliminarily, it looks like I have AVM, and I'm waiting to see how big and exactly where, which will determine my treatment options. The wind seems to be blowing in the direction of radiation therapy or arterial shunts, rather than intracranial surgery, if repair is deemed necessary. I'm wondering if anyone else around here is living with AVM or has had one treated. I know it's a pretty rare defect but MR has a lot of readers, and a few doctors at that. Any advice or wisdom is welcome... Looking at the probability charts for an AVM to burst or bleed over my lifetime, I'm a little scared to sit back and do nothing...
     
  2. skunk macrumors G4

    skunk

    Joined:
    Jun 29, 2002
    Location:
    Republic of Ukistan
    #2
    My condolences. It must be very worrying. I know a fair bit about hydrocephalus and ventricular CSF shunts, but not AVM. Sorry I can't help.
     
  3. takao macrumors 68040

    takao

    Joined:
    Dec 25, 2003
    Location:
    Dornbirn (Austria)
    #3
    oh no not another "i thought it was something geeky but turned out to be something different"

    when i read the title i thought "AVM ? i've been using their ISDN hardware for years now .. _that's_ a thread for me"

    but it turned out different...

    i hope you get better soon ...sorry i have no idea what the other AVM besides them http://www.avm.de/en/ is ...
     
  4. Raid macrumors 68020

    Raid

    Joined:
    Feb 18, 2003
    Location:
    Toronto
    #4
    Damn man, I hope you're ok... (or as much as you can be given the news). My experience with AVM is limited to this girl I knew in university. Her AVM was detected at a fairly young age and her 'cluster' was closer to the left side of the brain, so they opted for a shunt. I think she had the surgery at about age 13-14, and given that she's almost 30 now I'm not even sure 'narrow-beam' radiation therapy was availible at the time.

    I know she was nervous about ever having a grand mal or hemorrhaging, but I never heard her mention of any instance of either after her surgery. I did a quick google check on AVM and found this here (site seems bare bones, but accurate):
    Given those stats I guess the main concern is to keep hemorrhaging under control. Radiation might do the trick to stop the cluster in it's tracks, but the little blurb at the website I linked to says treatments can take up to two years... I'm certainly not qualified to give any sort of medical advice, other than to say study up on the treatments and listen to your doctor!

    While the girl I knew was concerned from time to time about her AVM, she was still able to lead a very normal life. I'm sure whatever treatment is opted for you will have the same (if not better) results.

    Best wishes!
    Raid:)
     
  5. rainman::|:| thread starter macrumors 603

    rainman::|:|

    Joined:
    Feb 2, 2002
    Location:
    iowa
    #5
    Yeah, I can take steps (and plenty of Trileptal) to avoid having seizures, it's the prospect of hemorrhaging or bursting that's on my mind (no pun intended). Most of the case studies I read were for older (40+) people, so by the time they found out, they were almost out of the risk zone.

    I'm very optimistic, it may not be a fun thing but I'm thankful to live in an age where we're even discussing things like narrow-beam radiation... I have complete confidence in my neurologist. I just wish I didn't have to wait two weeks for the news!
     
  6. Mechcozmo macrumors 603

    Mechcozmo

    Joined:
    Jul 17, 2004
    #6
    I Googled for AVM and found that eBay has them new and used.

    ~sigh~

    I hope it all turns out OK for you. It is bad news, but look on the bright side: you know know about it and in two weeks will know everything about it that you need to know.

    That's good news! :)
     
  7. PlaceofDis macrumors Core

    Joined:
    Jan 6, 2004
    #7
    ive never heard of AVM, but im sorry to hear about your problems Paul

    i hope everything works out for the best in the end and just remember that you are in our thoughts and hearts here on MR
     
  8. Doctor Q Administrator

    Doctor Q

    Staff Member

    Joined:
    Sep 19, 2002
    Location:
    Los Angeles
    #8
    I'm very very sorry to hear this, Paul. I'm really rooting for you and your doctors to figure out a proper (and successful) treatment plan.

    You've probably had the condition forever and it just didn't produce symptoms other than the times you had the seizures, so I'd be surprised if they recommend "watch and wait". I'm not a medical doctor, just speculating from what I've read about arteriovenous malformations.

    I don't understand the "arterial shunt" option. I thought blood flow needs to be cut off, not increased, in the affected area.

    Have they mentioned endovascular occlusion, where they use various means to "glue" the area shut? If the area isn't small, radiation therapy sounds mighty scary as a first response.

    You should understand your options and help make these decisions.

    I do have one bit of advice for you that I'm convinced is right: Consult multiple doctors and get a second (or even third) opinion. Medical specialists can be experienced, well-meaning, and still have differences of opinion. Any good doctor will have no objection to your getting other opinions or to your asking questions.
     
  9. Doctor Q Administrator

    Doctor Q

    Staff Member

    Joined:
    Sep 19, 2002
    Location:
    Los Angeles
    #9
    In case you need cheering up...

    You might want to think about hiding this post before the insurance company starts sniffing around. :weaksmile:
     
  10. rainman::|:| thread starter macrumors 603

    rainman::|:|

    Joined:
    Feb 2, 2002
    Location:
    iowa
    #10
    lol thankfully i work for an insurance company so i'm golden in terms of coverage :) You're right, I meant endovascular occlusion, they use a similar technique to inserting shunts... so i glommed onto the word. It's kind of weird, the idea of putting glue in one's brain... even just a little... I'll have to be careful with who I would tell, lest I get called glue-for-brains :)

    I'll definitely take your advice on getting a second advice to heart...
     
  11. Doctor Q Administrator

    Doctor Q

    Staff Member

    Joined:
    Sep 19, 2002
    Location:
    Los Angeles
    #11
    Since you are in Iowa, Paul, you might want to try to get an evaluation at the Mayo Clinic in Rochester, Minnesota. It's a major treatment center, very good at diagnostics. They treat AVM there.
     

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