So. I had a bleed December 24, 2016. My AVM was in the Pons. It was removed March 14, 2017. It has been a year and I’m still learning to walk and I still can’t use my hand. Its a long road but I’m still fighting. However I just had my angiogram and there is still a small piece of the malformation in my brain stem. He did not want to operate there. So now I’ll have a radiation consult. Will they be able to do the radiation? What are the side effects? What if they say no will it rupture again? Doctors are not very useful when it comes to answering questions because “every situation is different.” Has anyone else had this experience? FYI, I’m new to the site and hoping to get some good insight and support from other survivors. Thank you.
I’ve seen quite a few conversations about pons, cerebellum and brain stem AVMs and your post prompted me to try to gather these stories together.
So… just for you (and any other brainstem, cerebellum, pons, posterior fossa) and any other infratentorial or deep brain AVM folk, I’ve gathered some stories together here: http://www.avmsurvivors.org/c/types-of-avms/cerebellumandbrainstem
I hope some folk with similar experience can help you. I do have to warn that some stories are very old and the storytellers may no longer regularly visit. Our site migrated from one IT “platform” to another in summer 2016 and not everyone stayed with the change in technology.
The impression I get is that doctors do undertake interventions in these areas these days, though I don’t know how much more frequently, and with what success rates such things are done.
I hope this helps, even if only a little.
Very best wishes
Thank you for taking the time to gather the information. I really appreciate it.
You’re welcome. It’s what I hang around here for. I’ve got a bit of Admin power and I’m prepared to try to use it for the good of mankind!
Not everything about brainstem, etc is in this category, as often conversations about gamma knife belong just as much or more under Symptoms And Treatment > Gamma Knife or where the conversation is more mixed / didn’t start on the subject of brainstem etc. I’ve left wherever the conversation was.
I know, for example, that @Sal613 has a brainstem AVM and was asking after doctors recently, so this thread might be interesting to you, as well, but I’ve left that under Recommend A Doctor.
Hopefully, we are all here to support each other through this, so I hope you’ll find others who have the same questions as you.
Very best wishes
My AVM was on optic nerve very close to brainstem. In fact, the avm was restricting spinal fluid flow and caused hydrocephalous. The symptoms of this caused my doctors to look for a treatment for my inoperable avm.
The radiation I had was in 1990, the 13th person to get the treatment in Canada. I’ve had 28 years without any serious side effects and the avm was obliterated. I’m sure the treatment is even more advanced today, the radiation I received weakened a bone above my ear drum and caused a leak of spinal fluid into my ear canal (2 yrs ago) which required brain surgery to repair. Small price to pay for a cure to the avm which would have killed me by now.
Hi and welcome to the AVM-ers Club! So glad you found this site. My AVM is in my Cerebellum and it ruptured in Nov, 2014. Due to its location, surgery was not an option because my AVM was deemed too close to my neck muscles and surgery would have been too risky. The only option left to me was Gamma Knife. I had no serious side effects from the GKP, except for a 3-day headache. Due to my AVM location, I still have problems with balance, coordination, vertigo, loud noises, flashing lights, and dizziness to name a few. I had these things before GK and after GK. I have taught myself to do things differently than before. In April, I will have my 2nd GKP and I pray it eradicates the remaining 50% of the monster in my head. GK effects us in different ways, and I pray you have a positive outcome. P&P (Prayer & Patience).