Inoperable AVMs

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Comment by Christine Peterson on July 5, 2010 at 10:31pm

I found out about my AVM 1 year ago. I started having seizures and they did an MRI. Its too big and too deep in my temporal lobe to do surgery so they say i have about a 50-70% chance of curing it with radiation. Im still awaiting radiation, proton therapy was my best option per Loma linda. Hopefully this month the room will be ready to use. They didnt want to use another room with me because of the location in my brain they wanted to be as precise as possible so they did not destroy more brain than they have to. So im praying this month i can get started. Im just ready and anticipation is stressful enough.

Comment by Chris Safford on June 26, 2010 at 2:40pm

I read this book: My Stroke of Insight by Jill Bolte Taylor, PhD. It was really good. Ms. Taylor is in the neuroscience field& she write from her own experience, like she knew what was happening when her hemmorahagic stroke started. It was caused by an AVM! It is insightful, funny at times & other times you could relate to her & feel sad! She also has this song: Called the Brain Bank Jingle for the foundation she runs. She has two websites: www.mystrokeofinsight.com & www.jilltaylor.com.

Comment by Connie T on June 18, 2010 at 6:36am

An update on me: While my AVM remains inoperable, 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 Sheila Hillhouse on April 12, 2010 at 8:24pm

Hi Everyone, Been living with an inoperable avm my entire life. My symptoms include seizures, migraines, depression, and anxiety. But, I am glad to have a site that maybe I can use as a different type of medicine. Glad to be part of the group and can't wait to chat with you all. Take Care,
Sheila

Comment by Tony on April 2, 2010 at 1:10am

My daughter has a diffuse AVM and the radiologist at UCLA said it is inoperable. We have a follow up meeting with Dr. Martin at UCLA on 5/17/10. Kind of long. Does anyone know any surgeon that is willing to operate on a diffuse AVM. Not that I would have my daughter do it, but trying to gather as many options as possible.

Comment by Angela Rennie on March 1, 2010 at 12:19pm

Hello, I'm new here. My mother was diagnosed with an inoperable AVM back in 1996. This January she had her first bleed. Not too bad, just about a teaspoonful. We were told that she had a 2 - 4% chance of it happening again, well, she just had another, pretty bad this time just about 8 days ago. She was incoherhent and they didn't think she would survive. She did and has been home from the hospital now for two days. She had blood in 3 of the 4 ventricals of the brain. She is in horrible pain due to the blood flowing down the back of the neck, down the spine, and backs of legs. They said that is good because if it wasn't flowing on it's own they would have to place a shunt in. Now her doctor is having a specialist come down from Omaha to discuss the emobilization procedure with her on Thurs. They told her after the first bleed that she would not be a canidate for this procedure, now they have changed their minds with the second bleed coming so soon after the first and how bad the second one was. We as a family are trying to have every option available for my mom to make an educated decision. I know right now, she would rather take her chances on it not happening for another 14 years (or longer) than live in a wheelchair or hooked up to a ventilator. Does anyone have any suggestions for different treatment options. The AVM is located in the left side of her brain and is very large, I don't have the exact size. Thank you.

Comment by Tina Marie Thai on February 28, 2010 at 7:19pm

not sure if I belong here. One neuro says cavernoma, then neurosurgeon says its more like an AVM. it's deep into the cerebellum, been told it's a slow bleed-also been going crazy trying to get a neuro to listen to me, as i also have Chiari 1--5mm borderline they say, but my symptoms are very real, and have been for over a year....is anyone "in the same boat" as me? and has anyone been approved for disability?

Comment by Virginia L. Davies on February 19, 2010 at 8:12pm

hi, I have an untreatable AVM. Where mine is, makes it inoperable. On my speach center, where my right side is effected. - I had had a huge bleed before mine was discouvered, and that made the Gamma knife not possible. I had my first stroke in l972 - my last one in 85 - I am now 61 and have lived with this for a long time. I have a lot of other health problems, including now a small brain tumor on the right side of my head - the AVM is in my left side. I guess Got thought I needed ballance????!! - will check back to see you, and how you are doing - V

Comment by Daniel A Sadler on February 18, 2010 at 12:47am

Hi every one. Just found this area for posting. I was told I would not be able to have my AVM treated as well. So I do under stand what it feels like to be in your shoes. I keept pressing on and finialy found some that was willing to performe Gamma knife in my AVM.

Comment by Mindy DeLaTorre on February 17, 2010 at 8:06pm

A local newspaper did an article on my cousin Joshua who has an AVM. He's 15yrs old. Some of his friends are doing a concert to raise money for medical expenses.There is so much support & prayer. http://www.whittierdailynews.com/ci_14406777

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