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AVM not an AVM


#1

Well, for the last few months I have been told I have an AVM. I went in yesterday for my cerebral angiogram. I was all prepped and ready to go. The doctor had already told me how the procedure was going to go and that he would be back in 1.5 hours because there was a person ahead of me. He came back after an hour and said he went over my latest MRI (I had 2 and a CT) with another specialist and that I don’t have an AVM but I do have a venous malformation in the muscle near the brain. He said we don’t have to do the angiogram. He said the person that read the latest report was just a radiogiist and that he disagreed with the findings. I went to medical records and had a copy, which he also somehow new. He said a new report will be written up. He also found a stage 1 Glioma that was missed and gave me a referral for a neurosurgeon. I didn’t cry when I found out about my AVM, but I cried most of the afternoon yesterday, because the seriousness of everything just went to whole other level. Just feeling a bit overwhelmed. The Glioma is in my thalamus, making it hard to access. Any thoughts bwoukd be appreciated.


#2

Joo,

Darn! That doesn’t really sound like the outcome you were looking for, though stage 1 sounds the right point to find out. I’ve checked through the Ben’s Friends community list and we don’t have a group that knows about gliomas, so I’ve looked up other support groups and found the following

http://www.abta.org/brain-tumor-treatment/brain-tumor-support/support-groups/support-group-listings/csc-la-support-group.html

They have a group in LA and there are other organisations with support groups.

How are you about it? However we can help you, just say.

Very best wishes always,

Richard


#3

Hello @govanjoo I am so sorry about your diagnoses of the Glioma - Here is a list in Ca of clinical Trials you might want to look at https://clinicaltrials.gov/ct2/results?cond=Glioma&term=&cntry=US&state=US%3ACA&city=&dist= - - Our group is very supportive and feel free to stay and vent - We dont judge and we are here for you-
Also just wanted to let you I had a massive stroke in 2011 that impacted my thalamus (unrelated prior to my avm) (avm came a few months later for bonus points) They drs orig thought I had an aggressive cancer and I was going to live 24 to 48hrs and I was in a coma. The drs actually used the term that my thalamus died and back in 2015 my MRIs MRA MRV showed some how its back I call it baby Jesus :slight_smile: - You can also send your images to be reviewed to Barrow in Arizona for $100 to get a second opinion to have peace of mind - I too am in California up by San Francisco and trust Stanford with my brain
Hugs Angela


#4

Thank you for the clinical trial info. Went on the website and there are several near UCLA about 1 hour away. I will look into this once I know a little bit more about my condition.