Who here has a cavernoma? Mine is in the brain stem iss yours? Is yours inoperable and did it bleed again?

Hi l had my avm just next to brain stem it qas nearly 3 cm.l had operation nearly 4 years ago search a lot of doctors for it and all said l might be blind or deaf or live like vegatable but it neded to remove and only one doctor said he can do it he’s name is nurcan özdamar in izmir in turkey.l am fine now l can walk with walking stick its still recovering he said one day l will be to drive car again if you want to contact him l can give you all his number everything
l deffinetely recomended him please be pozitif never let yourself down l will be very happy to share everything l know about it with you

Hi Eunice. You may wish to join this sub-group…

Hi Eunice!
I had a cavernoma in the brainstem and I was told it was inoperable by 5 neurosurgeon here in Cincinnati. It bled in May 2011, March 2012 and February 2013. A month before my last bleed, I found a Neurosurgeon that offered the surgery. This surgeon is known all around the world for his brainstem surgery. His name is Dr.Robert Spetzler and he is as THe Barrow Neurological Institute, in Phoenix Arizona. I traveled 2000 miles to have the surgery. I am doing well after a long recovery, but the recovery was a small price to pay for not having to worry about another bleed. Do not let the word "inoperable" scare you. Do not be afraid to seek the best neurosurgeons opinions. I found that in the neurosurgery world, a neurosurgeon will say Inoperable but what they mean is "I cant do it without causing more damages than good".

When you had the surgery was a piece of skull removed, how long was the surgery and recovery?

Hi Eunice.

I think it is great that you didn’t give up. :slight_smile:

I had to switch doctors myself after my first one “retired” to “consult only”. And that was many years after I waited for the team to find a safe way to operate on me.

It was very discouraging when I dealt with the man whom took his place. He had the equipment, and could have done the radiosurgery to finish what they started, but it seemed like he was overrun with responsibility.

He didn’t know his new patients at all.

To he honest, I don’t think he even had time to read our records. :frowning:

I’m glad you kept pushing on to become better regardless of their opinions. I’m also very happy that you didn’t take no for an answer and found the right surgeon for you.

I have cavernoma of the brain and brain stem. I so agree the Dr. Spetzler is world renown especially when it comes to the brain stem. Wishing you a speedy journey to find physician that can help. I personally had surgery at Stanford Medical Center with Dr. Gary Steinberg. I have resection of my temporal lobe and frontal lobe. I have 3 all together and had surgery on all of them in one surgery. The brain stem they monitor every year or if I have any symptoms.

Hope your insurance covers these physician. Also Dr. Rigatmoti (sp?) is another one. Check them out. They are all worth the trip.

When you had the surgery was a piece of the skull removed? How long was the surgery and recovery?

Hi Eunice, I did a search for you and can see loads of posts of this:

Hope it helps. Take care.

Wow thank you so much I will read.