Please explain craniotomy

Hi,

I got my appt to see the Neurosurgeon tomorrow. I am nervous, all I can think of is “brain surgery” the thought of that sounds so unbelievably scary. Are you awake for this? Please tell me no. I hope it’s not what I need, maybe they can get rid of my AVM by embolization or radiation. I can’t stop thinking about this and now I feel every symptom because my mind is playing tricks on me… I’m reading all of these stories and it seems that AVM is way more serious then I first thought. I would love to hear all the success stories especially ones with no after affects… I just want to be my normal self, the one I’ve been for 38 almost 39 years.

Thanks,
Rachel

HEY RACHEL - NO, WOULD BE THE SHORT ANSWER IF ONE IS HAVING NEUROSURGERY … ARE U EVEN IN NEED OF THAT … THERE ARE OTHER TREATMENTS AND SURGERY BEING THE MOST INVASIVE … WHAT TYPE OF AVM DO U HAVE … MOST OF HERE ARE SUCCESS STORIES (WE ARE HERE!) BUT EVERYONES’ STORY HAS A DIFFERENT TWIST … UNIQUE TO THEIR OWN. TAKE CARE … DMR avm survivor 1980 … (the stone age)

DEAR LIAM, “PLEASE QUOTE YOUR WORK WHEN THE WORDS ARE NOT YOURS.”

Rachel,
I had no idea I had anything wrong untill my AVM ruptured and I spent some time in a coma. You, however, have the advantage of fixing the problem in a controled and planned event. Any surgery is serious. However, after having ‘open-head’ surgery myself, I can tell you my two negatives; -,
I probably won’t race anymore, and I will be one ‘ugly’ bald dude.
The other side of this- I’m alive.
Have faith. The human body is a tough piece of equipment. Besides, you ladies don’t have to worry about going bald later in life .
As you have read, there are also other options you may want to consider, such as the Gamma knife.
Keep us updated on your progres.

Rachel,

As scarey as it is, the up side to crainiotomy is that once the AVM is completely removed, it’s gone. You may have issues that you have to deal with, but you don’t have to live in fear of a bleed. Each case is different, in some the risk of surgery is greater than the risk of living with the possiblity of a bleed.
My daugher is a great success story. She was nearly dead when we got her to the doctor after she suffered a major bleed. Later the neurosurgeon told us that he’d never had a patient in such bad shape survive. We had a rough month in the ICU, but the AVM was removed. When we brought Dani home she couldn’t walk and her vision was severely limited. She had a 90 degree field of vision, having lost all sight processed by the right occiptal lobe. Now, 7 months later, she is almost completely recovered. She still has a bit of a field cut (the vision problem), but it has improved enough that she will be able to drive when she is old enough. Her coordination, memory, and cognition are spot on.
I hope your appointment goes well and your doctor can ease some of your worries.

Hi Rachel,
I had a craniotomy one year ago. I won’t lie but it was a very hard surgery for myself and family to go through. They put me in a drug induced coma for five days so I wouldn’t move. Please read my story. I came out all good, but still have numbness on left side of face. They shaved the underneath part of my hair ,so I was lucky. I was in the battle of my life…I woke up ,couldn’t talk ,walk feed myself…etc It has been a long journey back however they said they got it all. I had both the embolization first day and the craniotomy the next. Yes they sure put me out…but these surgeries are all different for every one. I pray you make it through with flying colors…just don’t give up! Keep telling yourself “I CAN” and you will.
Sending you Angel light and love…d

I’m sure your doctors will help lead you in the right direction. With my son the surgeon felt strongly to remove the AVM due to the location. His was located close to the surface of the brain in his frontal left lobe. Every case is so different. Listen to what the doctors say and maybe get a second opinion to be sure you’re taking the right path. We’re all here if you need us.

Hi Rachel, I had a craniotomy 6 years ago. It took 3 months to actually have if due to complications with my AVM. I was fortunate enough to come out just like my old self. I am glad they did the craniotomy, I don’t think I would feel so safe if they did’nt atleast i know it’s totally gone.

Hi Rachel, I was in your shoes 10 yrs ago. I was very scared and I canceled my surgery about 4 times. I had a 50% chance of dying. I came to the realization that it would be better to do something than nothing, so I finally had the surgery. I was put in some type of ice bath and they put me in a coma. They thought that my aneurysms would burst during surgery so they were taking precautions in case they did. You need to sit down and make sure you understand everything that is going on with you before surgery. Write down all the questions you want to ask before your appt. to see the doctor. I did just that. I had 2 full pages of questions. It took the doctor about 1 hr. and 1/2 to answer all of them, now that’s a great doctor, I hate that he has retired. I reallize that a lot of doctors aren’t going to voluntarily tell you everything, that’s why it’s best that you ask the right questions. Please get more than one opinion, you may benefit by other means of treatment. I’m not a doctor so I wouldn’t know, but just please check all areas of what may be best for your type of avm. I wish you the best of luck!

Hi Rachel, IVE ONLY HAD RADIATION GAMMA ,WISH I COULD SAY WHATS NEXT FOR YOU,ITS FUNNY,HOW ALL DOCTORS DO DIFFERENT TREATMENTS,YOURS AND MINE ARE THE SAME SIZE AND LOCATION AND THEY DID EMBOLIZATION TWICE ON YOU,WHERE THEY WOULD NOT DO THAT FOR ME,AFTER READING SO MANY STORIES ON HERE ,I ALWAYS WONDER WHO IS RITE,WHAT DOCTORS DO WHAT FOR AVM’S,AND HOW TO TREAT THEM,MAKES ME THINK TO JUST LEAVE MINE ALONE,PLEASE TELL ME WHAT THEY DECIDED TOMORROW,I SURE HOPE ITS JUST RADIATION FOR FINAL TREATMENT OR EVEN NOTHING AND LET IT SHUT DOWN,WILL BE PRAYING FOR YA,REST OK AND GO IN WITH POSITIVE THINKING,CAROLINE

Have you had your surgery?

They definitely put you out for brain surgery lol. But you might not even need it. Just trust your doctors and don’t listen to anyone else’s opinions. Get your best options & know everything about them, so you can make the choice. I don’t remember my craniotomy, but if it’s your only option or best option, do what you gotta do.