Hi my Daughter is 26 and has 21 Av in the brain Stem, she had some embolization dont on them and with the result one bleed, they will not do any more embolization on her but are looking at having Gamma Knife done we are waiting on the Doctors in Shefield in England to see will they take her case on. is there anyone out there that has them in the Brain Stem i would love to hear from you thanks
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Best wishes and hope this helps,
Hi Lisa, I have one on my brainstem. I have had 3 emobilizations and getting ready for surgery on friday. I had surgery 2 months ago and the neurosurgeon wasn't able to get to the area. Mine had drawn in a feeder from my spine so they will be going in and either clamping it or caterizing it depending on what they find when they get in there. Why do they not want to do any more embolizations on her. With my first emobilization I had a mild stroke but the other two have gone fine. The neuro team told me they have gone in as many as 13 times on a patient. Let us know if the Drs will take her case and how she is doing. Will keep her in my prayers.
Hi Cheryl, they wont do any more emobilizations on Lisa because of the one that bleed while they where glueing and he told us that they wont touch her anymore here in Ireland, that is why i cant wait to hear from the Doctors in England to see will they do the Gamma Knife and i am so afraid in case it wont work, they told us that they will not operate that it is to dangerous i dont really know to much on it but it is in the brain where it makes her breed and she was also told never to have children that the risk of them bursting is very high in pregancy, so we just have to believe them , it is not what a 25 year old wants to hear. I will keep you in my prayers and i hope everything goes very well and you recover fast after it, God bless let us know how everything goes
Hi -- first, my thoughts and prayers are with her!! My AVM was located in the brainstem. An embolization was performed in 1983, but one of the portions of the malformation did not seal off completely. In 1990, it bleed again, but this time radiosurgury was done. Regular surgury was done first to remove what they safely could without the risk of being paralyzed, and then radiosurgury. When I was going to return for my 2nd treatment, the radiosurgury did what it was suppose to do and the doctors were able to remove the rest of the malformation. I am still here to talk about it!!!
Hi Diane, i just wish they would do something for her, the Doctors here in Ireland wont do anymore all they did was Embolization which on the third attempt she had a bleed, they have sent her files over to England to see will the doctors over there do a Gamma Knife on her and we are waiting on the outcome, I am so happy that you are doing well thank God . thank you for letting me know that there could be something out there for her.
Hi There, my AVM is not in brainstem but I just want to say that the team in Sheffield is wonderful in responding back.I live in Dublin and was referred to Sheffield as well last yr. I'd advise to follow with them personally rather than waiting to hear back(I was on phone with them almost every day until I heard that they have accepted my case). I had GK done over there in Oct 2011 and have all positive things to say about entire team and especially Dr Kemney.
Hi It is lovely to hear from someone that has been there, i dont even know what hospital it is she might be going to, if any, I am ringing Beaumount everyday with no luck, still waiting on them to ring, Where are you living in Dublin?? and what Doctor where you under here, did you have to stay long over in Sheffield and did anyone go with you, do you mind telling me your age, my Daughter is 26 . is there a group or anything you attend with other people that has AVM, I would love for her to talk to someone that has been there but at the moment she wont talk to anyone. Does the Gamma Knife hurt getting it done? and can you loose your hair? with the treatment,i hope this is not to much questions for you but i know very little even though she has them 3 years now, until i hear from you thanks .
I hope you hear from the Drs soon! I can understand them not wanting her to have children especially since she has had a bleed. Keep me updated on what the Drs in England have to say. Thank you for your prayers and I will continue to keep you and your daughter in mine!
I sent you a PM..
Hi Cheryl just a quick note to see how you are you are in my prayers God Bless
Hi Lisa. Thank you for your prayers! Surgery went well and I was home on Sunday!! The Dr said he clamped the feeder and it was a success! I go in on the 29th for a MRI and see the Dr afterwards...pray it hasn't drawn in anymore feeders! Depending on what the MRI shows I will see him in 6 months or a year. God Bless.
I had the brain stem AVM bleed and stroke almost 2 years ago. I'm still in the wheelchair and fully dependant on others. I have been getting better but always had some set backs. I'm hoping to just go on the straight raod to recovery. I had embolization, brain surgery in the attempt to remove the AVM (which couldn't be removed), finally I had cyber knife at Stanford. I just recently suffered side effects of the radiation, went thru life support, feeding tube and the trach all over gaian. I'm not giving up and working hard to get better. How's your daughter now? Jose.
Hi Josh, so sorry to hear you had side effects from the Cyber knife, never give up Josh because ever year they are coming up with something new and one year it will be your turn. As for Lisa we only have heard The Doctors in England have refused to do Gemma Knife on Lisa, they have stated that doing anything on her would be more dangerous then her living with the AVM, she is not a very happy girl at the moment we are all so down with the news. 3 years ago Lisa took a bleed that left her in a wheelchair, had double vision in her left eye and has no hearing in her left ear all from the bleed/stroke but 3 years on she is walking her ballance is not great but she is getting around her eye is much better but will always have the double vision in it and her hearing is not back, so Josh dont give up work hard at getting back to the best you can, as i have told my Daughter all that matters is she is still her with us, it will take her a little time to come to terms with the choice they have made for her, keep in touch and stay strong, God bless Josh
I had a brainstem (Pons) AVM removed at Stanford Sept 2011...
I am now over 8 months post-op and doing very well...Fire away if you have questions.
There is more on my profile related to my experience.
Hello Lisa, my AVM ruptured when I was 22. I’m 25 now. It’s been quite the journey. I work out every day and really work my ass off. I am also very hard on myself but I have come along way because of it I think in the last three years. Since the stroke I have suffered with double vision, nystagmus, which gives me vision issues, ataxia, which means my limbs are shaky, speech issue seems,balance issues and left side numbness which has me in a wheelchair for now. Very frustrating.