My son Daniel has avm in the central brain stem,(not too clued up on it all medical ways yet) So far we have been told to not have any kind of treatment,surgery,whatever due to the risks
…Anyway what i would like to know is has anyone had the physical side of having a avm on the brain…problems with when standing still starting to stumble or walk backwards??This is happening to Daniel and i got very distressed in seeing this :(.We are waiting to see the neurosurgeon (in uk) But i would like to hear IF anyone else has had this or similar?
June I had some effects like what your talking about I would walk close to the grass when going down the street because I was afraid of falling. Thats one of things I have learned about AVM and the treatment that goes with them every day is different eather the avm of the drugs seam to change something.And we all hope the change is for the better. Gods speed gordon
hi june,
i had a very large avm surgeons refused to opertate on…but i began deterating down my left side…when walking i started dragging my foot and tripping over all the time and began dropping things out of my left hand continuously …i finally found a surgeon who explained to me that the avm was so large it had began stealing blood and oxygen from healthy areas of my brain resulting in damage to these areas hence the problems walking and grasping…he prefromed the operation as he believed it would only be a matter of time before i would have been in a wheelchair permently because of the damage caused by the avm
Thankyou Alicia for your reply…I am just so thankful to know Daniel is not alone on having these symptoms. Could you please tell me how i go about getting a different opinion from another surgeon?Do i go to my local doctor and do it through them (we are in scotland and it is the NHS we are under) or can i approach them personally?and if so would this be classed as private treatment?(having to pay for treatment)unfortunately we are not in a position to pay for any treatment if this is so…I hope you can help me on any of these questions?or anyone else reading this?As i believe uk is diff to usa medical services? Your symptoms are so similar to Daniel’s and i appreciate your moral support
Hi june,
My husband was 24 when he had his AVM. his was in the central brain. he did not know that he had an avm he had been playing tennis all day in the summer sun the day before his ruptured. he did start bumping into the corner of walls, this was after he had gotten out of the hospital. He has a shunt
I think I would get a second opinion. did they say what risks that were involved.
When does he see the neurosurgeon?
Was he stumbling or walking backwards when you talk to the surgeons?
I will keep him and your family in my prayers
Tina
june,
just go to your g.p and ask for another referal to see another neuro surgeon,
and keep going…i went to 10 before i found one that would operate on me…hang in there…dont give up hope…always here for you
june mcintosh said:
Thankyou Alicia for your reply…I am just so thankful to know Daniel is not alone on having these symptoms. Could you please tell me how i go about getting a different opinion from another surgeon?Do i go to my local doctor and do it through them (we are in scotland and it is the NHS we are under) or can i approach them personally?and if so would this be classed as private treatment?(having to pay for treatment)unfortunately we are not in a position to pay for any treatment if this is so…I hope you can help me on any of these questions?or anyone else reading this?As i believe uk is diff to usa medical services? Your symptoms are so similar to Daniel’s and i appreciate your moral support
Hi Tina Daniel has no appointment in as yet for the neurosurgeon to see him again,hopefully after the festive season is over,No he was not half as bad as he is now when he was first seen by the neurosurgeon in Aberdeen (he hardly even had a limp or other symptoms then.which was may 09) I am sure going to go for another opinion now that so many people on here have suggested that.I cannot thankyou enough for replying to me and i am taking note of everything from so many others on this site as we felt we were in a situation where we should just get on with the fact that Daniel has avm and “wait” for whatever it may bring! 
The neurosurgeons that discussed Daniels avm (By MRI scans etc) had just said it is too much of a risk to tamper with it in any way,Daniel also has fluid in the brain ,of which he was offered a shunt but then again the risks were so high,as they put it “It has been in his head all his life and to tamper with it may cause the worst for us and Daniel”…So we decided against the shunt aswell
Tina said:
Hi june,
My husband was 24 when he had his AVM. his was in the central brain. he did not know that he had an avm he had been playing tennis all day in the summer sun the day before his ruptured. he did start bumping into the corner of walls, this was after he had gotten out of the hospital. He has a shunt
I think I would get a second opinion. did they say what risks that were involved.
When does he see the neurosurgeon?
Was he stumbling or walking backwards when you talk to the surgeons?
I will keep him and your family in my prayers
Tina
I also have an AVM on my brain stem, the size I am unsure of as I have not been told. I was limping, and it grew progressively worse, despite trips to the chiropractor. I also had a weakness in my left arm that grew progressively worse over time, despite weight training. I was told I had swelling on the left side of my body as well.
About a week before I went into the hospital I had a lot of numbness in my left side, I couldn’t feel light things (paper, tennis balls, etc.) when I was holding them. I was very weak on my left side, only able to lift about 15 lbs. If I leaned too far to the left I would fall, I frequently tripped when walking.
I would really reccommend trying to get your son in for more opinions (as it sounds like you are trying). On my AVM I had coiling done to help emobilize it, and although I have heavy restrictions on what I can and cannot do, at least I have my life.