LOOKING FOR ANSWERS. ANYONE WHO HAD A AVM REMOVED DID YOUR SURGEON CUT YOU IN THE BACK OF YOUR HEAD OR SIDE APPROUCH. 20 MONTHS POST OP STILL CAN' WALK BUT GETTING THERE. ANY ONE STILL HAVE VISION PROBLEMS --NASTAGMUS--DIZZY ALITTLE. NUMBNESS. ANYONE HAVE THEIR VERMIS SPLIT.---BRAINSTEMER OP.
Hi Ed,
I looked at your profile and the journey you've had is certainly NOT FUN!
To speak to your questions, I think where the surgeon goes in depends most on where the AVM is and what's in the way of getting there. After typing that, I guess that's a "Duh" statement by me, huh?
From what I've read, having issues in the brain stem is about the worst possible place as there is so much critical area there. Quite few years ago, when we were seeking treatment for our son's epilepsy, we met a family in for one year followup. This youngster had had 50% of his brain removed and he had no or almost no loss of function. In trying to stop his seizures, they determined that the half of his brain that was triggering the seizure (one whole side of it was "hot") AND most importantly, his brain has rewired itself such that everything that half of the brain should be doing had transferred to the other side. So after extensive testing, they figured out that they could take the bad half out.
Kid was doing great! Go figure?
Best wishes,
Ron, KS
Hi Ed. I am not certain why some people on here do okay after an operation while others have lingering problems. However, I do know this…anyone who is here is on my prayer list at night. Sending positive vibes your way right now!
Hi Ed,
Sorry you continue to have so many unpleasant, very difficult challenges to cope with.
My thalamic surgery incision was @ the top, right side of my head. My NS was able to go through a previous surgery site.
Because of the deep location in my brain (on top of brainstem), the CM's involvement in my brain and all the bleeding from it, I have L-sided numbness, muscle-tightness and some hypersensitivity.
I did have to relearn to walk in rehab post-op of 3/9/10 thalamic surgery, so I can relate w/the frustrations and challenges.
Take care & keep up the hard work!
Patti
Ed, I've had two craniotomies (one rear entry, one side entry) and had to learn how to walk again both times. My last surgery was in '97 and I still have a lack of depth perception, vertigo, nystagmus, and topical numbness. I couldn't pass a sobriety test stone sober but, considering the alternative, I'm not too bad off.
It's a long, slow, painful process. I just tried to focus on my gains. Don't get too upset when you plateau. And, listen to your body. Don't push yourself too hard. You need time for healing, too. Strive for balance in everything. Like you, I didn't expect to survive either one but am making the best of my second chance.
Hi Ed,
It's been 40 years ago since my first of four craniotomies for a cavernous angioma. Everything was still crude and experimental, and scary to me, But they had no other techniques to use like they do today. I was just 17. The first doc cut a flap on the right rear side of my head ( The AVM was in the right rear occipital lobe) and basically all he did was to remove the hematoma (the size of a grapefruit, drained the blood and fluids, then sewed me back up without removing the AVM. Wouind up losdding vision in my left eye completely and part of the right.
I have my story online at:
Talk to you soon,
Rob Forsythe
Hi Ed,
I am seven months post-op from a brainstem AVM and am experiencing everything you mention except there still is a lot of dizziness. My surgeon went through the back of my head. As far as i know the vermis was not split. I will most likely go for surgery later this year to realign my eyes. My mom just told me about this woman who didn't walk for over two years. Now she walks like nothing ever happened. When asked how she did it she said that she just didn't give up. I am not as far as you are down this road, but it seems like a very long and very hard journey. There have been some pretty down weeks for me. But I have two little boys who I love to bits, so giving up isn't an option for me. I don't know if I gave any answers. Someone told me that it can take time for things to heal PROPERLY. I am clinging to that.
take care,
Sara
Hi Ed,
I am seven months post-op from a brainstem AVM and am experiencing everything you mention except there still is a lot of dizziness. My surgeon went through the back of my head. As far as i know the vermis was not split. I will most likely go for surgery later this year to realign my eyes. My mom just told me about this woman who didn't walk for over two years. Now she walks like nothing ever happened. When asked how she did it she said that she just didn't give up. I am not as far as you are down this road, but it seems like a very long and very hard journey. There have been some pretty down weeks for me. But I have two little boys who I love to bits, so giving up isn't an option for me. I don't know if I gave any answers. Someone told me that it can take time for things to heal PROPERLY. I am clinging to that.
take care,
Sara
THANKS FOR THE REPLYS. I THINK WE GOT A GOOD CROSS SECTION OF experiences HERE. LISTEN TO YOUR BODY TALK , IT WILL TELL YOU WHEN YOU ARE READY. MY VERMIS WAS SPLIT BECAUSE OF THE BLOOD THE CA LEAKED INTO MY BRAIN SO NOW WE MUST TRIAN IT TO FIND AND ALTERNATE ROUTE---WE ARE. MINE WAS IN THE PONS, THE BRAINSTEM AND SPETZLER RECOMMENED THE SIDE APPROUCH. THE REASON BEING IT IS AN INCH LESS DISTANCE AND PRESERVES THE CEREBELLEM AND VERIS LEAVING THEM INTACK. I STILL WALBE BACK AND FOURTH. I FOUND OUT GET BLOODWOPRK BECAUSE THEY HAD ME ON DECATRON FOR 6 MONTHS. HAD TO REBUILD MY STSTEMS FROM THE INSIDE OUT. GAINED WEIGHT--IN PROCESS OF LOSING. GOT A SHUNT. I DO BELEIVE THAT IT IS ABOUT MONEY WITH MOST DOCS. I HAVE INVESTIGATED MY HOSPITAL STAY IT WASN'T A PLEASANT EXPERIENCE. NOW I TYPE WITH ONE HAND AND MY DOCS TRIED TO SHRINK THE CA WITH STERIODS--YOU DON'T DO THAT!!!!
IF THEY A WAY 90% BACK I WILL AND AM FINDING MY WAY BACK WITH TIME FOR HEALING AND SUPPLIMENTS TARGETED AT CERTAIN FUNCTIONS OF THE BODY ALONG WITH MAJOR MUSCLE WORK OUT--I BOUGHT A TOTAL GYM. IT HELPS ME BALANCE AND GET STRENGH.
I HAVE NASTAGMUS…IT THROWS ME OFF BALANCE…BUT I WILL FORCE MYSELF TO WALK…THE NERVES TAKE ALONG TIME HEAL…IF I ONLY COULD GET RID OF THIS NASTAGMUS…PEOPLE CHECK YOUR OPERTIVE REPORTS FOR HOW YOUR PROCEDURE WAS DONE…YOU LEAN ALOT…MY SURGON NEVER TOLD ME NOTHING TILL THE DAY I TOLD HIM I WAS TALKING TO SPEZLERS’ OFFICE.
Patti, hows the west coast doing?
Morning Ed,
Oops, guess it's noon where you're at! ;)
It's a beautiful spring day on the west coast - how bout you?
It's a good day to do what I can w/ yard work - we got our limits, but gotta make the most & best of it, right?! :)
Keep up the can-do spirit, Ed!
Patti
FUNNY THING SPETZLER WANTED TO USE THE SIDE APPROUCH. SPLITTING THE VERMIS GIVES YOU TRUNK WOLBLE. IT’S THE OLD WAY OF DOING THE OPT.
Ron, Kansas said:
Hi Ed,
I looked at your profile and the journey you’ve had is certainly NOT FUN!
To speak to your questions, I think where the surgeon goes in depends most on where the AVM is and what’s in the way of getting there. After typing that, I guess that’s a “Duh” statement by me, huh?
From what I’ve read, having issues in the brain stem is about the worst possible place as there is so much critical area there. Quite few years ago, when we were seeking treatment for our son’s epilepsy, we met a family in for one year followup. This youngster had had 50% of his brain removed and he had no or almost no loss of function. In trying to stop his seizures, they determined that the half of his brain that was triggering the seizure (one whole side of it was “hot”) AND most importantly, his brain has rewired itself such that everything that half of the brain should be doing had transferred to the other side. So after extensive testing, they figured out that they could take the bad half out.
Kid was doing great! Go figure?
Best wishes,
Ron, KS
ABSOLUTLY!
Toni said:
Ed, I’ve had two craniotomies (one rear entry, one side entry) and had to learn how to walk again both times. My last surgery was in '97 and I still have a lack of depth perception, vertigo, nystagmus, and topical numbness. I couldn’t pass a sobriety test stone sober but, considering the alternative, I’m not too bad off.
It’s a long, slow, painful process. I just tried to focus on my gains. Don’t get too upset when you plateau. And, listen to your body. Don’t push yourself too hard. You need time for healing, too. Strive for balance in everything. Like you, I didn’t expect to survive either one but am making the best of my second chance.
Not sure if my vermis was split but I had a cerebellar AVM so its possible. Was cut open from above my right ear all the way down the back of my neck. Its been two years after the surgery and I still feel light headed, have sensitivity to sunlight and my eyes have focal issues. I’ve just been diagnosed with a nervous system disorder called Dysautonomia that may be causing alot of these problems. If your Autonomic nervous system is disrupted in any way it can cause alot of problems.
Ed,
My surgeon did the cut on my right side. I had a brainstem avm. That was Aug 2009. I still have some numbness but these keep improving at a very slow pace but it keeps improving.
Jennifer
Ron, I just read this e-mail I have a little behind here in my mail this was posted on July 17th 20011. Anyway, how the surgeon operates depends on his experience.
Fortunately did not have that much experience that he bragged about. All they did is put me on high doses of Decadron, which put me in a lot of danger. Then they let the damn thing lead, for six months straight. That gave me all my deficits that will be in a wheelchair. Barrow neurological wanted to do a lateral intrusion. I would find out that my surgeon was a little apprehensive when it came the operating. Finn had the experience they bragged about. Some of the surgeons are no damn good.