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Brain surgery for arteriovenous malformation in the brain stem.
Three years ago,November,2022, my 55 yrs old brother was diagnosed with arteriovenous malformation in his brain stem and had brain surgery for it. After the successful surgery, the surgeon prescribed physical therapy and said he would be walking with the help of a walker within six months and back to normal life within a year of the surgery.However despite PT,OT and Speech therapy,my brother is now
wheel-chair bound.The whole right side of his body is paralysed, he can barely speak,see out of right eye,and has constant pain in right hand,leg and foot. He has been to several different nuerologists and neuro-muscular doctors,undergone multiple tests,etc. only to be told there's nothing to be done for him. He would like to know if anyone has had brain stem surgery and experienced a similar outcome?
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I am so truly sorry this debilitating condition has occurred, with your brother! I have an ‘anomaly’, which could be similar to the AVM, that your brother had! Mine, also, is in the brainstem. So, mine presses in on the cranial nerve roots, causing various symptoms, that are generally mild, for me! Anyway, the point I’d like to make here, is that my neurosurgeon consulted with other neurosurgeons, and they all concluded that the brain stem area, is very dangerous to operate on! The conscious area, is located in that area, and chances of getting some serious kind of deficit, such as paralysis, is high! So, instead, I was put on beta blocker medicine! If the Docs had operated on me, I might have had a deficit, like your brother!! ☹️
Mine's in my right temporal lobe, there's no way I'm letting everybody cut into my brain. I know I've a higher risk of a stroke, but most people live their lives, never knowing they even have it.
And my biggest fear is being incapacitated and yet aware of my surroundings.So if I stroke out that will be my time
If you live in NY, I heard Columbia Presbyterian Hospital has a very advanced AVM department. If he lives in S Florida, my neurosurgeon is Dr Starke at UHealth Miami. He's published many papers, is head of department as well as the research department. ONLY IF YOU'RE STUCK IN FLORIDA!
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1 Reaction@malmor Thank you so much! We're in northeast Pennsylvania. We'll look into N.Y. Columbia Presbyterian hospital. Also try to access Dr. Starke's papers.
@malmor That's understandable not to have surgery if you're functioning normally. .hope you continue to remain stroke-free. As for my brother, it was in the brain stem and his symptoms were so severe it was surgery or he would die within days. Best wishes
Absolutely. In the brainstem, it's the most dangerous and difficult place to remove it. There are several different ways to have them. Removed, but of course, it depends on where they're located. I am so sorry for your brother. And i'm sorry that you have to go through this.He's lucky to have you
@anntom i also read an article earlier that NYU langone NYC rated number one for the neurodepartment in 2024 and 2025 unfortunately, I moved south over 20 years. Ago so I don't know anybody. I could recommend also heard Brigham's women's hospital in Massachusetts is a front-runner with avms as well. what I found is teaching hospitals are the places to go because they're doing the. Research and their cutting-edge regular old hospitals. The doctors are not equipped and the hospitals don't have the equipment. There are okay if you break your foot, but not if you have something in your brain.
@anntom UHealth Miami Dr Robert Starke it's very lengthy. He's board certified in everything he teaches. He researches.
He's a little uppity, but I could care less. I'm not looking for a friend. I'm looking for the best doctor and in my opinion in south Florida, he's the guy
https://doctors.umiamihealth.org/provider/robert-m-starke/526029.
There is a Facebook group called Stemmies that you can join and ask questions and connect with people there.
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