I opened this for the ones who had craniotomy to share their experiences. I know how scary is for someone go for a craniotomy but I think it is harder said than done.
As everyone knows my son Daniel did two, being the second one just 20 days ago. In our case Daniel did well on both surgeries. The first one took 3:30 hours and the second one 4 hours. He spent one day at the UCI and then transferred to an apartment for about 5 days and then can go home. He started walking 3 days after surgery. He had no pain at all.
I know five other peolpe (they are not in this network) who did craniotomy and are well, without any loss. I know a old lady who did 3 and is doing great. I met on 19-yearl old boy whose avm was in the vision area and his doctor was able to remove 100% and he is doing great. Another 10-year old boy had angioma cavernous in the speach area and he also is fine 100%. Thats why is important the medical experience.
In my opinion a bleeding can cause far more damage than a craniotomy. Of course if If the avm can not be surgically treated then you can go for radiosurgery, embo, wait, etc…
People are concerned about infection but it is a risk we have to take in order to be avm free. You can always check hospital records.
Only a team of avm specialists can decide if the benefits of surgery overcome any risks.
The most important of everything is to chose a doctor with lots of experiences in removing avm´s.
Don´t be shy to ask how many cases he/she has treated and in how many he/she succesfully removed the avm.
Hope this forum will give hope and some peace of mind to many.
I had my “Craniotomy” about a year ago, and so far, i’ve been recovering really well. A few days after the surgery, my short term memory was really bad. I could barely say one coherent sentence properly, without forgetting what i was talking about in the first place! Also, my peripheral vision on the right side of my right eye was gone.
Since then, thanks to my Occupational Thereapy, my memory has greatly improved…my periphiral vision is still gone, so i’m going to get a new set of glasses.
During hte surgery, the Doctor only shaved of half of my head, but while i was in a coma, my mom told the nurse to shave the rest off, because it would not have made sense to wake up with half hair, and half ball… My hair is growing back quite nicely.
Lately, i’ve been having random headaches, that start and stop for no reason, so i’ve been taking Tylenol to ease it, and also, sometimes if i laugh too hard, the where i had the surgery (left lobe - on the top of my head)…i sometimes get tingling sensations, that sometimes become very painful when i laugh, so sometimes i have to control myself when i laugh…
But all in all, i’ve come so far…and i’m jsut trying to take it easy, and appreciate the things that i have. Sometimes i have to pinch myself when i think about the fact that i survived a BRAIN surgery. Thats intense huh?
When My AVM was removed I had a craniotomy. I’m not sure I had any choice in the matter, since my AVM ruptrued, and don’t know how experienced my Dr. was at the time, but I have had very little problems. Sure I feel like a complete air head at times when I forget things people tell me almost instantly, since I work in eldrly care though, I just fit in. :o) Other than that, side effects are so little, I’m still trying to figure out if it’s avm or age sometimes. But Erica, like your son I was also young when this happened, this might have an effect on the way we heal up. But I do nottice an interesting differance of side effects in those on this site who have had other treatments and crainiotomies. IrishRose, its almost been 12 years since mine I to still have sinsitivity on the operated side of my head, sometimes it is tingily some times it is numb, it takes some time before the nerves heal up there. As for your head aches, sometimes you have to pay attention to the events leading up to the head ache, anything and everything may cause a head ache, even just sleep sometimes. And I hate to tell ya, but you can at least expect a migrain once a month, unless your fixed or pregnant. :oP Although I’ve found that the hormons in pregnant also cause your head to hurt, I’m not sure about the fixed part, have no plans to be fixed anytime soon. :oP
Your words are very true an d honest.I had 2 craniotomys.In the first the couldn’t remove all the avm so they just remove a part of it.In the second was a ‘bigger’ surgery because they were removing the bone from the temporal lobe because i was in an edema.But i was more or less in a coma situation so i don’t know then how was any damage.But now thanks god i am fine.But i don’t think anyone can decide if it’s better or worst a craniotomy but always can be needed.
My daughter, Abbey, had a Craniotomy on April 17th 2007. She bled in the early hours of the morning of the previous day and was flown to the nearest neurosurgical unit in Brisbane. We were initially told thatthey would aim to medically manage the swelling and then look at options. However, by the 30 hr stage a grim faced neurosurgeon was telling us that the swelling was escaping medical management and that if they didn’t perform an urgent craniotomy her chances were very poor. The craniotomy was originally to remove a blood clot and reduce the pressure - although the AVM started to bleed on the table and a decision was made to remove it there and then. We had a tortuous couple of weeks where we did not know if Abbey would spend the rest of her life profoundly disabled.
An angiogram performed a few months after the procedure indicated that all AVM had been removed.
Abbey has made a great recovery from an intellectual point of view - her learning is fine. She suffers from a hemiplegia mainly affecting her upper limb on the left hand side.
For us there was little choice in the circumstances. I haven’t had to agonise over choices the way some of you people have. The doctor who treated Abbey had done ‘hundreds of tumours’ but admitted doing only a small number of AVMs in his career and Abbeys was the most complex. He initially wanted to transfer her to someone else in Sydney but it would have taken too long. Her brain was being compressed against her skull. If we had been put of the surgery because of this then she would certainly be a lot more disabled than she is now. We just had to put our trust in a man who I could tell was sincere when he told me he would not give up without one hell of a fight. From accounts of registrars who were in the room it was certainly that.
We were concerned by the risk of infection as Abbey had more or less completely foreign blood (she lost 5 times her blood volume in surgery) and she was also kept in a hypothermic state. This means that the normal response to infection (rise in temperature and white cells) would be difficult to detect). Thank God the ICU at the Children’s in Brisbane is run with impeccable infection control and everything was OK.
Hi, Erica,
My name is Pam and I have just joined this avm group. I have never heard of not getting an avm repaired.
Mine ruptured so I had assumed that was how they were all taken care of once they were found. I am
really quite functional. Other than sometimes my speech and writing slip up when I get fatigued. The
surgery was 24 years ago. I have had 4 children since. I suppose I have lost quite a bit. I was rather
intellectual before and very physically active, but now I can’t even do simple Algebra nor do any exercise
that is jarring to the old noggin’. But they are finding that walking is so good for a person. It has been
good for me! I couldn’t imagine living with an avm in the anticipation of a rupture. The rupture is what
did the damage for me. The surgery and recovery was the breeze. I would probably encourage everyone to have the avm removed, if they had as great of neurosurgeons as I did. Mine were Thomas
Jefferson Mimms, now in Texas or Louisiana and Robert Hood in Salt Lake City, at Salt Lake Regional and
University of Utah Hospitals.
My father had a craniotomy on June 9, 2008. It has been four months since his surgery (his anniversary was yesterday). He has not had any major side effects…no infections. He still does have headaches, the tingling/burning sensation feeling near the incision, and also a ‘swollen’ feeling at his incision. The neuros say that this is all part of the healing process. And that it takes time. How much time, they do not say. Like another survivor has said, it’s BRAIN surgery…But I can say that we’re very fortunate that he does not have a major side effects (seizures, loss of memory, etc). I just wish that he would go back to his normal self…not have to worry about the brain after-effects anymore. It’s on our minds 24/7.
I also wish that there was a lot more information out there. And I just wish that the neuros weren’t always so busy and were able to answer questions right away. There is a support group at Jefferson University Hospital (surgery site) every third Wednesday of the month. So next Wednesday will be the first time we’re all going, whole family, since his surgery. We’re hoping to get many questions answered. We’re definitely looking forward to it.
Dear Michelle, thank you for sharing your dad story with us. I am sure he will continue to improve and reach 100% soon. Everyone here suffered the lack of information. I was always nervous to ask neuro about my son situation but at the end, you are right, it is better to know it all and study all the possibilities. Lots of love to all your family.
I had a craniotomy 3 weeks ago today. It was about the size of a golf ball on my left frontal lobe. I had to have 2 embolizations a week and a day prior. The surgery lasted 6 hours. I was on a vent for one day. I was in icu and stepdown for a total of 8 days- one day was for the embo. I am doing very well. No therapy after the hospital. I took out my staples a week after surgery myself- I’m a nurse. I’m on oxycodone for pain- which is getting better every day- and keppra for seizure prevention. Yesterday my hair started falling out. It’s due to the Keppra. I only have to take it for 10 more days. I’m doing really good though and I’m very grateful it’s over!
I find this discussion really really hard to read. I struggle every day with the decision that we made for our son . So many days, I think we are crazy to have decided against the craniotomy to get rid of his AVM.
I have these moments of extreme panic when I think- “what the hell are we doing!?!? How can we play this waiting game when the risk is so high???” I keep seeing the face of our neurosurgeon when he said that surgery was an option but we needed to decide between it and Gamma. I wanted to scream at him. "Tell me what to do!!!"
I wish I could stop that tiny voice inside of me. I’ll never forgive myself if we’ve made the wrong decision.
gotta go get kleenex.
My husband had a craniotomy 1.5 years ago and was in the hospital for just 3 days and was up and out with friends 4 days after returning home. Other than some ugly mood swings (that I notice but he does not) sensitivity to sun light, and tingling at the incision site, he is doing just fine. He did not have a bleed and had just one seizure (which was how the AVM was discovered), I think he was very very lucky. JOY, I dont know what we would have done if our neurosurgeon had not 100% told us that surgery was the best option. He was so confident that we felt secure in the decision (though completely afraid). Had he not been so confident, I think we would have NOT opted for it. Brain surgery just sounds so darn scarey, and it is. It is not an easy decision and there is no right or wrong answer, I dont think. Imagine if you had chosen surgery and something went wrong, then you would never forgivce yourself there too! My thoughts are with you.
Dear Joy, I can understand how you feel. In my sons case we had no option but the surgery. I agree with Kat, probably I would never chose craniotomy if I had two options. I think you and your family decided correctly. Forget the time, live a day at a time and be positive. I know the panic sensation it is pretty normal in a situation like this. Dont blame yourself, just be strong for your boy. Time will pass and soon this problem will be behind your backs. Lots of love.