9 Brain Hemorrhages Help!

Hi my boyfriend Michael has had 9 brain Hemorrhages, and we are at a loss of what to do. Thankfully it has always bled in the water spaces of his brain, and he’s had no lasting effects. I’m currently in the Neuro ICU with him because he has had another one. His doctor is Alejandro Berenstein at Saint Luke’s Roosevelt in Manhattan, NYC. They’ve done multiple embolizations, and just did another a year ago. They don’t seem to be working, they actually seem to hurt him since he’s had 3 bleeds since. Does anyone have any advice? His AVM is in the center of his brain, and he has been told the only option is embolizations. We are desperately searching for another answer since he has been in and out of the hospital so much it’s hard to lead a normal life. Please share any information you have. Thank you so much!
All The Best,
Leah

Hi, have you had 2nd 3rd opinions etc? If not I would be trying to find the best doctor experienced with they type of AVM you have.

Michael,...Leah,...

Barbara H. contacted me and asked if I would post this sub-group for you.

http://www.avmsurvivors.org/group/inoperableavms

I hope this helps.

Hi Michael & Leah,

How scary for you both!

I echo Brett D and wonder if you've considered another opinion? I understand there are some excellent neurosurgical specialists in your area, so possibly start another thread for NY neurosurgical specialists??

I live on the West Coast and go to Stanford http://med.stanford.edu/neurosurgery/patient_care/cerebrovascular.html.

UCSF also specializes in cerebrovascular disorders http://neurosurgery.ucsf.edu/index.php/cerebrovascular_disorders.html.

Well wishes,

Patti

Hi I live in Philadelphia & I have an awesome doctor his name is Dr Robert Rosenwasser he is at Jefferson Hospital.If you are willing to travel he is so worth it.Here is his number if you are interseted (215)■■■■■■■■ here is his main office # (215)■■■■■■■■ (just leave a message for his head nurses Cindy & Marianna.You can look him up online and read all about him.I’m so sorry you & your boyfriend are going through such a tough time.You are in my thoughts & prayers

Brett, William, Patti, and Eileen thank you so much for the kind words and advice. I will definitely try to contact those doctors and I will check out the other forums. We are currently trying to search for other opinions, and having these other doctors names is a big help. All of this information is truly helpful, and I really appreciate it. Please don't hesistate if you have any other advice.

All The Best,

Leah

Hi Leah and Michael. Please NEVER GIVE UP HOPE!!! The sub-group Inoperable AVMs quite often has what I call the cutting edge info when it comes to AVMs. I will be praying for the both of you!!!!!!!

BTW...I hear Mass General in Boston has a very good rep when it comes to AVMs! Contact Louisa Cicillini on here. A lot of people contact Dr. Spetzler from the Barrow Institute in AZ! Please read my friend Keven River's discussion because you may find it interesting...

http://www.avmsurvivors.org/forum/topics/dont-stop-looking-for-the?xg_source=activity

I hope this info helps!!!!!!!