Can surgery have bad effects?

[Zachary]

I am thinking about it, but I want to know first what can happen if I go through the surgery? Also, with Craniosynotosis, can intracranial pressure build up in the skull to a point where it may have serious outcomes?


Thanks for helping answer my many questions!

[MikenAustinsMommy]

Hey Zachary,

I'm glad you found us. I think that not only can we help you, but you can help us as well.
The risks are just like any other surgery (too much bleeding, etc.) but I think the percentages are better with Cranio surgery. My son's plastic surgeon likened the procedure to a face lift (I guess it's the same incision line), with a little bone work.
I am not sure about the pressure. I think that at 16 years old all of your sutures are closed and your head is pretty much done growing. Do you know which of your sutures closed early?

[Mom2William]

Hi Zach-
I do believe the ICP (pressure) can build up and cause problems if not corrected but there are also certain symptoms that indicate pressure is evident. (headaches, vomiting, etc.) I am not real sure about all the symptoms tho.
My son was 3 yrs. old at time of surgery last feb. He did have signs of "not having enough room" for his brain and the Neruo. was concerned about pressure but my son did not have any learning disablities and had met all his milestones for his age, so the docs. were not worried about ICP. He began having headaches a month or so before his surgery and once the dr. began surgery he came to tell us that he did have a lot of pressure on his brain. I think he may have been having headaches earlier but was not able to communicate them to us very well. That being said - the dr. had told us that if he did not have the surgery that he could have very bad headsches by the time he was 5 or 6 yrs. old but there was no way to predict if he would or not. We chose to have to the surgery and he is fine!
I am not a doctor but from what I remember the drs. have to tell us all the worst case senarios so that we have informed consent prior to the surgery. As with any surgery there are risks, but I recall that we were informed about possible seizures, nero. damage like a stroke, too much bleeding. But my drs. also told us (I asked) that they have never had these issues.
As far as being older and having the surgery. Will did fine and was back to playing the second week. His scar is not noticable and they only shaved a very small strip where they do the incision.
I was also told by someone else that older children/adults that have the surgery did not have pain from the surgery as much as their skull felt numb for a while.
I am glad you found this site and as Heather stated you can give us mom and dads as much help as we can give you! I have probably given you enough info. to just make you have more questions. But just ask away- we will all be glad to help in anyway!
Kim

[Zachary]

Thank-you, this is really reassuring to know they don't shave all my hair off :) But I did notice something from baby pictures... lots of swelling, mainly around my eye... has this happened to any of your children?

[Jennifer]

If you go to before/after pics you can see lots of pics of the babies the days following surgery. There is some major swelling the first few days. Keeping the head in an upright position seems to help some-- (slanted bed, propped up on pillows etc....) The amount of swelling depends on how much work they do.

Hair-- each doc is different- Our daughter you couldn't even tell they shaved anything. The second surgery they didn't shave at all as they just used the same scar line.

[4myboys]

Our surgeon won't shave Remy at all. You know my husband lost his hair very young so I was a bit worried about the scar in case Remy loses his hair and just wants to shave like many men do and then later that night I was watching Law and Order and there was an actor that had the ear to ear zig zag scar and it was actually fine looking - very faint. He was older of course but it really comforted me.

I think as aware and insightful as you are - you will make the right decision for you. The best times in my life are when I am open to anything.

[Zachary]

Our surgeon won't shave Remy at all. You know my husband lost his hair very young so I was a bit worried about the scar in case Remy loses his hair and just wants to shave like many men do and then later that night I was watching Law and Order and there was an actor that had the ear to ear zig zag scar and it was actually fine looking - very faint. He was older of course but it really comforted me.

I think as aware and insightful as you are - you will make the right decision for you. The best times in my life are when I am open to anything.

Yeah, my mom was just talking about this. Dr. Fearon, the one I saw, was the first doctor to start using the zig-zag technique :) I was one of his first few to get it done, so it was a lot more efficient than those other doctors who used straight line and shaved all the hair off the head. I would like to keep my hair, thankyou!

[mikaylasmommy]

Hi Zach I know one of the moms through here has two daughters with bicoronal cranio. They live in Texas and might have went to the same surgeon as you. Anyway, her oldest is a teenager and just went through a surgery in 06, and 05. I will give you the link to the moms myspace page and you can contact her to see if her daughter would be willing to share her experience with you. http://www.myspace.com/pickypam

[Zachary]

Looks like I'm meeting new people everyday :) Thankyou, and her daughter looks beautiful by the way

[Matthews Mommy]

The main surgery concerns are blood loss and infection.
The ICP can cause brain damage which is why I opted to do my sons first surgery I was really scared about that. He had pressure starting to build and his Cranio was developing very rapidly.
My son had facial swelling but no bruising thank God, every individual develops and handles surgery differently.
There was minimal blood loss, and recovery was quick for my son.

[Zachary]

ICP can cause brain damage, but could it also enhance the brain instead? Like... change your mind for the better? Ive heard of how poking or pressuring certain parts of the brain can stop seizures, strokes, and other sorts of psychological and mental stuff.... but could it 'unlock' anything?

[saraweise]

I hope so. And why not? Maybe our cranio kids will be more gifted than we can imagine?