Quantcast

AVM Survivors Network

Any positive craniotomy recovery stories?


#1

I posted last week about my 16 year old son who has an AVM that was discovered last week. It is 2.8 cm at its biggest. He had the angiogram today. IT is located in his SMA- supplementary motor area. I am looking to see if there is anyone that had a craniotomy with an AVM in the same location. I keep reading awful recovery stories of the surgery and I am scared for him. We are considering the gamma knife, but there is still that risk of the bleed/stroke/ dying. I think my son wants it gone. I am scared of the recovery for him. I read some that sound much easier( none are easy) than others. The neurosurgeon is highly renowned and regarded and we feel awesome with him. Apparently people travel to come see him. Is there a difference in recovery from the surgery in relation to where the avm is located and it’s size? We have another follow up next week and I will be asking him all these questions, but wanted some input as I am already scared for my son and now some of the recovery stories are horrific. He is a baseball pitcher in high school. The neurosurgeon says he can be back to all activity and lead a normal life after surgery. He said the only main side effect from his location is a little weakness in the left leg, but there is only a 10 percent chance of that and even if that happens, he feels he could recover that. Any positive input is appreciated as I am just struggling with all of this.


#2

Hi Lisa again, I think I shared my story with you previously, But I had 2 craniotomies, The first was to save my life during a haemorrhage, I was in hospital for 2 weeks seemed shorter as the first week is a blur really I slept most of the time due to the medication and rest that I needed. I can say for sure that a haemorrhage is much worse than a AVM removal surgery, My second craniotomy was only 7 months later from the first, And this time was to remove the AVM I was terrified (Because I knew that they would be removing part of the brain !) and thought I would either not make it or never be the same again !, But I focused all my energy on thinking positive, It was mainly due to being on this site so often in those days and reading positive story after positive, Either that or I came to terms with what was going to happen and was absolutely fine with it. I’m not sure. Ultimately my second surgery lasted 10 hours and was supposed to last 3 or 4 !, I was in hospital for 1 week and back to work 8 weeks later !, I have recovered with no deficits from my 2nd surgery at all. This post is a little detailed and might worry you a little but the point in it is to let you know that my worries were wasted energy, Just keep telling your son that he will be fine and no matter what he will have your support, Ask him to tell himself the same and after a while if he’s like me at all then he will start believing it !. Take care and try not to worry too much he WILL BE FINE :slight_smile: , So will you. Take care

Martin.


#3

Hi! I had a craniotomy to remove my previously ruptured AVM. It was near my right frontal/parietal lobes. The prior rupture left me with multiple deficits, but the surgery actually cleared one of the most painful - my shoulder had been so painful that the occupational therapist could not even do passive exercises with it. After, it was much better (pain from constant 10 to occasional 2). I was finally able to get therapy to get some movement and strength back.
I went in for my craniotomy on a Friday at 5am. I came home on Sunday at dinnertime. I returned to work 2 weeks later. Unfortunately, some of my deficits remain from the rupture, so I wish my AVM was discovered in time to remove it before it ruptured.
Stay strong and ask as many questions as you have…keep a list. It’s hard to know what to ask at first, but keep reading this site and other reputable sites. Information is strength…Best of luck to you and your son.


#4

My son is 15 he had a haemmhorage last year. He was in coma for two months. He is learning how to talk, swallow, he has double vision, he is wheelchair bound and cogniton and memory were majorly affected. I wish I would have known ahead of time about avm but we had no warning signs. It just happened one day. If I had the opportunity to have surgery before haemmhorage , I would do it in a heart beat. A haemmhorage is no joke and it could happen at any moment. Everyone is different so get as educated as possible bc the drs don’t take the time to tell you what to expect. This is a great forum and it’s wonderful to read everyone’s experiences and success stories. Keep positive and take it upon yourself to read and you know your son best.
Good luck.


#5

Hi! I found that I had an AVM in my Left Frontal lobe. I am 50 years old. They told me it was in the area of my “secondary motor skills”. I was a Grade 1 as mine was also only about 2 cm. I opted to have a craniotomy at Mayo Clinic. the surgery wasn’t 100% successful as they could access it as easily as they thought. My surgeon was awesome. I was in ICU following the surgery for less than 24 hours, then moved to a regular hospital room for less than 24 hours, then discharged to home. Very little pain and no lasting side effects.
I returned to Mayo about 6 weeks later and had the Gamma Knife surgery. It wasn’t fun, but went home same day and very few side effects. That was just 3 weeks ago. Now I wait 1 year and go back for MRI to see if it’s obliterated.
If I had the choice to do again, I would still do the craniotomy again. I was amazed at how quickly I recovered! Hope that helps!