Second AVM 10 years after surgery from a bleed

Hello all!! I hate to be so relieved that there are so many other people facing the same delimna. It is reassuring to no that I am not alone and that the possibility (even probability) of surviving to a normal life exists.

After having surgery in 2000 for an AVM bleed, I battle nausea and dizziness daily. This is the life I have grown accustom to. In September I went to the ER and was admitted for a stroke. During the tests it was discovered that I have an active AVM in the brain stem. I have not yet found a neurosurgeon in KC that can guide me on a treatment plan. The assigned neurosurgeon had very bleak (and vague) news and made it clear that surgery is not an option. I am very concerned about adding additional symptoms to an already "interesting" day.

Any advice on how to deal with symptoms???

Thank you for all your inspiring stories and courageous attitudes!!!!

Hi Stefanie,

I can't speak about neurosurgeons, but my son went to a Dr Arkin, a neurologist just over the line in KC, MO. He was maybe 1-2 miles southeast of KUMED. Dr Arkin was younger and my son enjoyed going to him while he was at KU.

If you go to the members page, and advanced search, put "KS" in the city/state and you will see several AVMers in the KC area. Also do the search using "Kansas" and you will see some more. If you click on the member names or pic, it will take you to their story. Some of the stories might include DR names.

Hope this helps.

Ron, KS

Hi Stephanie. I am a firm believer that not all neurosurgeons are created equal. There is an old joke…What do you call a guy who graduated last in his medical class? You call him Doctor. Be sure and get another opinion on that bleak diagnosis. There is a sub-group here called Inoperable AVMs. Go to the main page then scroll towards the bottom on the right side you will find them. Good Luck!

Ron,

Hope this finds you well.

Thank you for the info!!! I'll give that a try. I am hoping to have a referral to KU pretty soon so I may switch neurologists as well. Good to know someone has had a positive experience!!

Thank you again for the help and advice!!

Stef
P.S. GO CHIEFS!!!!! :)

Hey the chiefs are toast–I gave up on their season long ago…

While KU is a fine medical institution and our daughter and a TON of our $$$$$ went to med school there, I’m not sure that’s who I’d want to FIX my AVM. If they are consulting recommending someone to fix it, ok.

The magic question FOR US was “How many AVMs similar to mine have you treated?” You want the answer to be in at least the high hundreds. Thousands are better. If they stutter and say “one of our residents trained with Dr X about AVMs”, that’s a big red flag (and not a chief’s pennant) for us.

BTW, way back when, when Hank Stram (?) was coaching or the owner, a high school buddy of mine owned War Paint, the horse that rode back and forth after a score at the stadium. They went to a lot of games.

Ron, KS

Sounds like Ditto with me.... I wish I had the words, maybe I'm just too tired or maybe still a bit angry.... Trying hard to count the days I don't count days, but there is nothing else we can do but move forward... My second AVM is adjacent to the brain stem and local Doctors have passed me amongst themselves trying (not to hard) to identify options. Last option was invasive but not a good prognosis so we may resort back to Gama Knife and risk the risks.

Would like to get some relief as the time between feeling good grows shorter and shorter and the bad gets worse and worse.

I'll present the multiple shot gama treatment at the new/next doctors visit in hopes that they can focus beams to appropriate sections and angles.

I know exactly what you mean...I got tired of going to different doctors only for them to find polite ways of telling me they would not touch it with a 10 foot pole. I don't know if it is of any help at all but I had my radiation done at KU Medical Center by Dr. Fen Wang using the Novalis TX machine. It took him about 3 months to figure out the best angles/doses to administer. I went every day for a week for about an hour each day and they gave me 10 different shots at each visit. I went in for my 3 month follow up and it is showing "significant reduction". So far no signs of necrosis. I finally have something that feels like hope!!
Don't give up and don't give in. I'm here to "talk" to and you can always e-mail me at ■■■■■■■■■■■■■■■■■ if that is easier. I don't have many answers but I totally understand.