Mid brain cavernoma(avm in brain stem)

Hi my name is nadia and My sister has a avm in the brain stem she has had radiotherapy after her first bleed but 6 months on has had another bleed.Please is there anyone who can help me who has had a avm in the brain stem.I would like to knw if surgery is a possability as it has been made clear by docters that this is a very risky procedure but at same time it is risky to leave as it is.Any help would be much appreciated.God bless.

My son has 4 AVMs. They are very diffuse and located in the Brain stem, thalamas and hypothalamsu. Our Doctors feel that it is too risky for anytype of procedure because he has multiple and they are diffuse and deep within the brain. THey can not fix all 4 at the same time and fixing one could put more stress on the others causing them to bleed. I know it is scary to leave them but I think in our situation it is the safest option. Good luck and God bless you too! Your sister is lucky to have you looking out for her!

Hi Nadia. There is a sub-group here that you may want to join...

inoperableavms

Go to the main page and scroll down then look on the lower right hand side and you will find them. These folks usually have a lot of good info.

I am going to send a message to my friend Patti Gilstrap on here. She may also have some good info for you too!

Hi Nadia,

I'm a friend of Barbara H. and I had surgery 3/9/10 in the right thalamus (on top of brainstem) for the resection of a cavernous malformation, CM (also known as cavernoma, cavernous angioma). My surgery was performed by Dr. Gary Steinberg @ Stanford http://med.stanford.edu/profiles/Gary_Steinberg/ - a GREAT dr. I highly recommend!

I assume your sister is wanting a 2nd opinion and I would strongly encourage her to send copies of her films, records, etc. to Stanford for a review, then she could decide which direction she wants to go. If/when she contacts Stanford, I'd also encourage she ask to speak with either Dr. Steinberg's nurse or NP.

For more CM-related info, please also visit http://www.avmsurvivors.org/group/cavernousmalformationsupportnetwork.

Take care & hope this helps!

Bless you & your sister,

Patti

http://www.youtube.com/watch?v=gvtkxDFICO0

Hi Nadia,

if it's an AVM I cannot comment. I have a brainstem cavernoma which has been resident for 25 years. If you are thinking of removal, in the States I would contact Dr. Spetzler's team in Phoenix, AZ. Good Luck. See http://www.cavernoma.org.uk or http://angiomaalliance.org.

Best, Ian.

Hi Nadia, Hope you are doing well and staying positive... I have an avm in my brainstem as well as two aneurysms..I had the radiation in 2008 but to tell you the truth not much has happened.... prof smee said need to wait 4 years before we look into anything else, however I was brought to radiation therapy as my avm was inoperable, i the same received that it was too risky... the brain stem controls everything in the body and one surgeon said if anyone was to operate in the brain stem i would be dead, where as if i was to have a bleed at least there would be a chance of getting out (lightly?!?) with a stroke.......... its been 2 years since that though and not all the surgeons agree, the best is to get as many opinions as you can... and then you have to make a choice (you i mean your sister and family) of what you think is best for you! wish you all the best in your search and remember we are all here to help xxx

Hello again Nadia,

While AVM's & CM'S are in the same vascular malformation "family,' their structure is different and treatment options for CM's are presently limited to surgery (in the U.S.)

Here's a link that provides a simplified definition between AVM's & CM's @ http://stanfordhospital.org/clinicsmedServices/COE/neuro/VascularMalformations/index.html

Best wishes,

Patti

my avm is in the brain stem . they did radiation but they cant do surgury its not a opsion for me got a mri done they saiod they didnt find anything so far april 10 will be a year for me got double vision learning to walk butv still fall doing therapy my throat was paralized starting to eat thingst though

A HUGE THANKYOU TO EVERYONE WHO KINDLY REPLYED WITH ADVICE ETC.WE APPRECIATE IT VERY MUCH.I HAVENT BEEN ON FOR A WHILE. GOD BLESS YOU ALL.GREAT TO KNOW THERE ARE SUCH WONDERFUL POSITIVE STRONG PEOPLE AROUND!