Untreatable AVM

[ashley299]

I have a small AVM by optic nerve and Pitutary and my Neurosurgeon said he doesn't think surgery would be a good idea. I want a second opinion so thats were my questions comes into it. Does anyone know of a neurosurgeon that they would recombend? Oh by the way I am a 19 year old girl so that is why radiation would be more harmfull with my whole life ahead of me. If you can help me it would be amazing!! I'm so scared!! Thank you so much!

[Vonnie71]

I too am a avm survivor and I know that you may be scared.  I had a great surgeon.  His name was Dr Stephen B. Lewis MD FRACS, James and Newton Eblen Eminent Scholar
Cerebrovascular and Skull Base Tumor Surgery, Department of Neurological Surgery
University of Florida,
PO Box 100265 Health Center
Gainesville, FL 32610
USA
Tel: [phone]
Fax: [phone]
Email: stephen.***@****

tell him I sent you!  Best of luck!  I will pray for you!
Always,
Yvonne

[bgpolo1]

i agree with the doc, since ur avm is on ur optic nerve u have a good chance of serious problems with open surgery. I also was not a candidate for traditional surgery for my avm and instead had gamma knife radiation. idk the outcome yet as it has only been 4 months but the recovery time was much shorter than it would have been with open surgery.
i am 17 now btw, i was 16 at the time of the surgery

but where are u from?? my surgeon was excelent, his name is dr george bovis, i see him out of lutheran general hospital in park ridge ill, but i also believe he sees patients out of alexian bros hospital in elk grove ill as that is where the gamma knife machine is.
also my first surgeon dr ruge is an excellent surgeon (he is also dr bovis' partner). rige reccomended bovis because he is more specially trained with gamma knife but dr ruge is also an excellent surgeon, he removed a tumor from a family friends' kids' brain a couple years ago when she was 3. he also works out of lutheran. i can give u their office numbers if u want it.
the other doctors that worked on my gamma knife (there were about 4 others) were also magnificent! and the nurses were just outstanding!!

jessica

[Angela11823]

I have a neurosurgeons name, although I am not sure where you are from?
He is in Detroit, MI. His name is  Ghaus M. Malik, M.D. at Henry Ford Hospital.
He and his team are awesome!  here is the website so you can check it out
henryfordhospital.com
He did my AVM Surgery in Nov. 2006
any other info needed let me know.
Angela
God Bless

[PaulMD]

Hi there.

I don't know any neurosurgeon but I can give you ideas about other options.  In place of surgery, a more focused form of radiation such as the gamma knife may be plausible to use in your situation.  This is focused radiation and does not really harm nearby structures and should have no long lasting effects.  Another option is called embolization where they block the blood supply feeding the AVM causing it to regress.  Surgery may indeed be not a good idea, but I suggest you discuss these other options with your doctor and ask if you can be referred to institutions that have this technology.

Regards and God bless.