Arteriovenous Fistula

[Dorobright]

Hello
  I hope you can give me some opinions.
I have a an arterivenous fistula (cerebral). I have had this for 5 years...that i know of..... It started with a "whoosh" in my left ear....I hear this all the time. It is quite annoying. I had testing -- cerebral angiogram. And the AV fistual was found.. At that time it was thought to be too deep to do anything about. I recently had another angiogram and it has been found that the fistula actually starts in the dura mater, but the vein enters my brain.  Hence, my neurosurgeon recommends surgery due to the location to coagulate the fistula.  
  I am told the due to my age (40), I should have this done because of the risks of it bleeding over time.  I am a bit scared to say the least. The risks for surgery are the same as this thing bleeding. It is not an easy decision to make.
  I am just looking for more opinions.  DO u have any percentages on the risk for this bleeding spontaneously and for surgery? Any opinions?
  Thank you
Dorothy

[slk]

BJP,  My source of my subarachnoid hemorrhage was not found.  It was described as aneursymal.  I have had 3 negative angios and lots of other tests since.  There was no warning.  I have no risk factors or family history.  It happened as I lifted an overloaded laptop bag onto my shoulder.  I got a sudden 'worst headache of my life' followed in minutes by stiff neck, nausea, vomiting and photophobia.  No loc, no seizures, no stroke. Sixteen days in the hospital.  Six more weeks of recovery.  Some long term issues that I am still dealing with.  But basically very, very lucky.  Only 40 out of 100 survive.  Only 8 of that walk away with all neurological functions intact.  Have lost two long distance colleagues of cerebral aneurysm since returning to work.  The angels were definitely watching over me.

Good concise info on AVM here:
http://www.neurosurgery.medsch.ucla.edu/Diagnoses/Cerebrovascular/CerebroDis_1.html

Also check out www.medscape.com neurology/neurosurgery section.

Sue

[BJP]

To Sue,

   Thank God that you survived..Angels were watching over you. I hope all is well for you now. May I ask what your symptoms were leading up to your ISH. Did you have any forewarning, How did it present...I know someone with an AVM thats why I am interested..If its to hard to talk about I understand, but the knowledge would be beneficial to my friend..Take Care and I wish you the best.....

[slk]

Your condition definitely warrants a second opinion.  If you are not already seeing a neurosurgeon who specializes in neurovascular surgery, see if you have access to one.  If you have to go outside your insurance to do this it will be worth the consultation fee.  You will most likely find this specialty at a university hospital.  Those hospitals with heavy emphasis on neurology/neurosurgery also have specialized interventional neuroradiology departments.  They work together to determine the best course of action for the patient.  Some of the better known in the US in addtion to the Cleveland Clinic are Mayo Clinic, Mass General, Johns Hopkins, UC San Francisco, UCLA, Barrows Neuroologic Institute.

Subarachnoid hemorrhage survivor,
Sue

[CCF Neuro[P]-M.D.-RPS]

Dear Dorobright:

Sorry to hear about your problem.  From the literature there is approximately a 1-2% chance per year that your AVM will bleed.  Depending on where the AVM is located, the extent of the AVM, and the size of the AVM one can make a decision about whether surgery or intervention with coils is needed.  Most of the time, AVMs are congenital, that is they occur during development and are with you from birth.  So, if a patient does not experience a bleed, then we would never know they had the AVM.  How many such patients exist is unknown.  We have all seen surgeries gone bad, but more patients present with bleeding than with surgeries that have gone bad.  Depending on where you are located, you might want to get a second opinion about the use of coiling to ablate the AVM.  This is a procedure where they use a catheter like the one they used for your angiogram and place a coil or coils in the AVM to clot it off.  Whether is can be done for your AVM can only be determined by looking at the angiogram and if there is an experienced neuroradiologist to do the procedure in your area.  I wish I could give you more information, but without looking at the agiogram it is very difficult for me to give an opinion.  The one thing that would push me toward advising you for somesort of ablation is that as we age our brain gets smaller and the strain of the venous system stretching to the smaller brain can often cause spontaneous bleeding as these bridging veins stretch and tear.  This may or may not happen to you, but it is one thing to think about.

Sincerely,

CCF Neuro MD