Not an easy question to answer. I never felt like I was going to have a brain bleed. No headacks, no seizures, nothing. My AVM was found by accident, I found a great doctor to help me, I had the treatment and then I had the bleed 6 months afterwards. When I had my bleed, thankfully, I already had the BEST nuerosurgen available to save me.
Most of our members didn't know they had an AVM and are still alive.
I hope that answers your question.
Yeah, as long as youâre not going to be by yourself for extended periods of time, you should be OK. Youâll know if youâre having one. I had no warning, but I woke up with an agonizing headache, so I knew it wasnât normal. & then call the paramedics right away. Mine took a while to take me since they were arguing with my parents for a while, & I was still Ok.
If you are near San Francisco, get to UCSF. They have one of the finest neuro departments in the country. They saved my life when no one else could diagnose me....my scans were sent manywell known places. Go immediately. You will be gad you did.
Sounds like a great plan, Mgysgtcm! Wishing you the best.
I was told by 6 neurosurgeons that my bleeding brainstem cavernous malformation was inoperable and i could die at any moment. Dr.spetzler in Phoenix Arizona told me he could do the surgery. There was lots of risks, but it was my best chance. I had surgery March 1. He is my Hero.
Dandelionwishes! You are so right, Ddr. Spetzler has saved many lives. I'm so happy that you are doing so well!
Hello, Dandelionwishes?
I hv sent you a message in regards to son's case. He has been diagnosed with AVM then later different opinion was cavernous, which we are told can be be operated on. He has bled once and had stroke fro 5 days. he could not see properly, eye and mouth were facing right side. he recovered fro the bleeding and now can not concentrate on anything. They say his malformation is deep seated at the brainstem, or right medula not sure which. can this be operated?
The file attached show its AVM. confused!
I just had a crainiotomy 3 weeks ago in phoenix AZ through Barros Neurological institute. Dr Peter Nakaji performed my surgery. I am cured!!! It was in the left frontal lobe so he had to remove my skull on the left side of my forehead . He didnât shave my head!!! He parted my hair along the hairline to camophlage my scar. Itâs a 12 inch scar that looks like a head band. I have long hair and I am able to cover it up in public without anyone the wiser. I was extremely impressed. Definitely recommend
Congratulations, Tania....You are now AVM Free!
I went to Dr. Benitez at Atlantic Nuerosurgical Specialists in New Jersey, and he is great! Top possible rating. I doubt you'll want to go all the way over there, but that is my input. I'm cured
which neurosurgeon you went with?
This thread is from quite a while back, and itâs likely that some members are no longer active. You may want to do a search on the site for doctors.
Sharon from ModSupport
Hi Crystal,
Hope you are well. I was wondering if you could let me know what treatment you received and if it was successful? I have recently been diagnosed with a right posterior frontal AVM, 4cm, following a suspected bleed.
I am from the UK, currently under the QE but soon to have a private consultation in London. I have also had recommendations for Mr Tolias. Still awaiting Angiogram but looks like Gamma will be the only viable option.
Many thanks
