New in Central Florida, My story

I am new to this site and new to the world of AVM. I am still learning so much. I suffered a hemorrhagic stroke Sept 2017, spent several days in local hospital ICU, but recovered well. I am a 55 year old woman and very active, work full time and have two college age kids. MRI and CT showed hemorrhage but everything else looked within normal limits. I decided to go to Tampa General USF for second opinion and had diagnostic angiogram which confirmed a small AVM. This past week I was scheduled to have embolism with medical glue, but neurosurgeon, started the process, but aborted once he got in there because of location. He did get much more information of actual location of the fistula. I also had another MRI to do some more mapping of the area.The AVM or should I call it fistula? is located near the thalamus within a intersection of many vessels. Surgeon now referring me to another neurosurgeon for directed radiation treatment. I’m seriously considering another opinion. My fistula is small, about the size of a dime and has already bleed once. Apparently I’m finding out it is in a difficult area to treat. I’m thinking of going to Mayo in Jacksonville. Any suggestions. Tampa General/USF has been wonderful, I’m just not sure they have as much experience with these lesions.

Marianne, welcome to the site! Its great you found us, and you’ll see a wide range of experience here as patents and care givers. I have an AVM in my left temporal that hemorrhaged in May of 2016 and had gamma knife in November 2016. A variety of opinions is always good, there are some fantastic hospitals that deal with these things. You mentioned Mayo in Jacksonville, probably would be a good choice from what I know of Mayo. Once again welcome! John.

Welcome to the site!
You may also want to check with St. Joseph hospital in Tampa; they treated my avm.

Hi Mike,Marianne , i also have the same problem here as you in my temporal lobe, it was rupturing once ,affecting my balancing, with tremor , and language .

I’d like to know what is then the most side effects of keppra, because i now only get gabapentin and metoprolol which is not helping me much.

Thsnks for your kind inputs, have a good day !


It took me several months for my body to get use to Keppra; at first my main side effects were drowsiness, dizziness and irritability but now I just have some drowsiness about 3 hours after I take it but it controls my tremors and my seizures.
I have been on it 2 years now and my neurologist might start weaning my dosage down at my next appointment in 6 months.

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Thank you so much Mike for your input. Did you have radiation? Gamma Knife?

Glad I found this site. Just still trying to figure out terminology and choices. A bit overwhelmed at this point.

No I was fortunate enough that my AVM was near the surface and was accessible so I had a craniotomy to remove it.
They had recommended gamma knife or gluing but I wasn’t willing to take the chance of having another bleed waiting for that to work so I had it removed.

Hi Marianne! My daughter was diagnosed with her AVM a little over two years ago. It is in a bad spot…the sensimotor of her brain (left side). It causes numbness in her right side. Seizure meds control the grand Mal but she still has small ones. Long story short our local neurosurgeon said nothing could be done because of it’s placement. After two years we went to Mayo in Rochester. Dr. Bruce Pollock was able to do Gamma Knife surgery this past August. Her six month mark is Sunday. This marks the time that if she has any long term or permanent paralysis it will start now. Dr. Pollock is world renown in this field and we felt very comfortable with our decision. I would suggest going there if you can. Mayo is an amazing place.

Also, we started at UT Southwestern in Dallas with Dr. Babu Welsh. He is the first to say we could do GK. Freaked us out so we went to Mayo! That is another good Dr. with experience. Just a little piece of info from someone who has been there, done that!! If I can answer anything else, please let me know! Good luck to you!

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Hi Marianne. I see Dr Tawk at the Mayo in Jacksonville. Great doctor. He and Dr Peterson are treating my case. Dr Peterson is my radiation/oncologist. Dr Tawk is my Neurosurgeon. Mine has not ruptured. Mine was discovered in October of 2012. It has not completely gone as of yet. I have had 3 embolizations and 3 radiation treatments. Mine was fairly large when it was 1st discovered. It was also in an area that they did not want to operate on if at all possible. Would have ran the risk of paralysis on my right side, language issues, ect. Waiting on my next angio to see if this “thing” has disappeared. It won’t be until November of this year.

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I have an appointment with Dr. Sauvageau @ Baptist Lyerly in Jacksonville for consult tomorrow. Understand he is good surgeon, willing and experienced to treat some of the more difficult cases. I want to see if surgery is an option. I still haven’t heard back from Mayo. I may try to reach them while I am in town.