Unraptured AVM

Comment

Comment by Mohamed Ghoneimy on July 27, 2010 at 9:38am

I discovered the AVM from 4 months ago by MRI, then the doctor ask me to do CT Scan, I told him I will not undertake any action that I do not want to know more. it is something scary ........... but finally I do the CT Scan, and now looking for doctor (Empolization) to treat me. I am confused and i don't know any thing. Do or not do do the two options is difficult.

Comment by Sandie Alger(Kasey's mom) on June 23, 2010 at 7:59am

Good luck to you Connie. July 7th is right around the corner. Kasey's angio showed the avm had shrunk significantly(3 ys post g.k.),,but wasn't gone. We are now considering a craniotomy to get rid of the last of it once and for all but we are very scared. The neuroradiologist said it was very small and very superficial so surgery would be a good choice. I hope your embo goes well for you!

Comment by Connie T on June 18, 2010 at 6:29am

Good luck, Sandie...I'm praying for Kasey's treatment to go well.

An update on me; Dr. Meyers feels that he may be able to ease some of my headaches by embolizing some of the vessels pumping blood into the AVM. I am scheduled for an angiogram and embolization on July 7th.

Comment by Sandie Alger(Kasey's mom) on June 18, 2010 at 5:34am

Kasey is getting an angiogram today! 3 yrs. post gamma knife.

Comment by Tanner Lunt on June 17, 2010 at 11:56pm

Be careful. try to find someone who has an avm similar to yours and who's further along on thier own path. i've found two who are really simular. one through Dr. Spetzler who had performed extensive gamma knife surgery on him several years ago and as a result of the radiation impact is slighty paralyzed on his right side and is still experiencing brain deficit. another i know had the "more risky" crainiotonomy and is fine as of now a year later. all three of us have a 3cm x 2cm avm with large MCA feeders in the broccas area, motor cortex, and speech area.

Comment by Ben Morrell on May 20, 2010 at 9:07am

I first found out about my AVM in 1991. After I got over the shock of it. I decided not have it treated. I was involved in the martial arts, I worked... I felt fine & it wasn't effecting me. Mine was in the center of the brain & measured 3cm x 2cm. I lived a normal "healthy" life... Until April of 2007. I had multiple grand mal seizures. Here my AVM got bigger & now measured 5cm x 3cm. I was put on seizure meds. & had gamma knife. I was doing ok until the middle of last year. When I developed more problems. Some of the drs. I've seen believe its from the long term effect of having an avm. I now live with; non-epileptic seizures, dystonia, involuntary muscle movements, short term memory problems, anxiety, & of course the depression that comes with it. But, I have heard of many people who's avms never became symptomatic. I just wanted to share my experience with you. thanks for listening.

Comment by Elizabeth Conti on May 20, 2010 at 9:00am

My 3 cm AVM is in my right frontal lobe. I was diagnosed with it after I got an MRI in October of 2009 because of severe and frequent migraines. My neurosurgeon (Dr. Peter Rasmussen at the Cleveland Clinic) strongly recommended Gamma Knife because my AVM is deep and open brain surgery would be dangerous. I had Gamma Knife on January 22, 2010. I haven't had an MRI since then, but I feel much better. I rarely get any headaches at all anymore. Before the Gamma Knife I was getting them almost daily and the pain was terrible. I also have more energy now than I did before.

We'll have to see if there are any changes on my 6-month MRI in July, but so far I'm very happy with the positive effects of the Gamma Knife. Hopefully it's a sign that the AVM is shrinking. Also, getting the Gamma Knife was pretty much painless and there was no recovery and very little risk. If it does obliterate this AVM (and it probably will) then I will be a major advocate of Gamma Knife! I will make it my mission to tell others about it who might benefit from it.

Comment by Jamie Pantelis on May 20, 2010 at 8:51am

My AVM was taken out by a crainiotomy in Jan. I am so thankful it was discovered before it ruptured. Denial was something I went through for the first few weeks after I found out about my AVM and oh the thought of brain surgery was was something I never expected to endure. This kind of stuff only happens in a Lifetime movie or some plot on a soap opera not to anyone I know and certainly not to me. The choice of open surgery was a no brainer for me. I just pick myself up from the shock and did what I knew had to be done before I had no choice. Mine was on my r temporal lobe and since that is the main place for memory I was worried that it would effect everything I knew or will learn in my life. Not so. I went back to work and remembered everything. I am sure things will come up that I don't, but for now I won't worry about it.

Comment by Connie T on April 4, 2010 at 12:41am

My AVM is in the right parietal lobe. It is quite large and twisted with three aneurysms. Doctors feel it is too dangerous to treat, at least until I have a bleed.

Comment by Tracey Eyles on April 3, 2010 at 12:50pm

Hi, my son has a front rolandic 4x4cm avm, it is located right near his motor skills. We are currently trying to find a way to treat and have had mixed options, we have been told if we leave it he will have a bleed some time in his life as he is so young and it will probably be a big one due to the size of his avm, he has around 1000 vessels to remove. Has anyone heard of Dr John laidlaw at royal Melbourne? thanks Tracey

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