I just found out that my 4 month old son needs to have surgery on his skull. Since I've put my request out there on friday, I've gotten some new information. I'm looking to get feedback on a proceedure to correct this. The condition is called Craniocynostosis, specifically, Scaphocephaly. His skull fused together too soon which will not allow for his brain to properly grow so he needs surgery to basically reshape his head. From what I read, there are two surgerys, one is CVR Cranial Vault Reconstruction, that is "traditional" 3-4 hour surgery which leaves a scar and requires a 5 day hospital stay, but, again is the standard for correcting this defect. The second is a fairly new proceedure (10 years new) that is called Endoscopic Strip Surgery. Where the bones are removed endoscopically through two incisions. This surgery only takes about 50 minutes and is MUCH less invasive, and the children can leave the hospital the next day. I have to make my decision by Monday and I've done the research. It seems obvious to me to go with the less invasive surgery. I just havn't talked to anyone who has had it. Everyone has had the CVR surgery. There are pros and cons for each surgery, but I just need to be more sure the strip surgery is the right choice. Thanks for the advice.
http://www.scaphocephaly.info/
Try the above link, there are 3 support groups posted on the site...I hope this helps.
Many blessings to you all.
J.
Hi J.,
My cousin-in-law has two children who have the same condition and both had to have skull surgery. While it is scary to have your children going through major surgery, both of her kids did great and are healthy and happy today. From what I remember (her son had the surgery a few years ago), the surgery itself takes a few hours and kids stay in the hospital for a couple of days to recover. I believe they had to wear helmets for a while to help protect their heads as well as assist with the reshaping. They are both great kids - you would never know they had this condition or the surgery!
My best to you.
A friend of mine's daughter had this when she was an infant as well. she is going to be 4 this summer and you would never know. I can only imagine how scary it must be, but your son will be fine before you know.
L.
Although I have never experienced this you may find it helpful to look on WebMd and other sitesrelated to Scaphocephaly. There has to be information and parent support groups for this with plenty of parents who have been where you are. Please don't be afraid to discuss with your doctor all of your concerns. He/she may have other resources for you as well.
Believe that all will be well and know you will cry at your babies graduations and dance at his wedding.
Here is a link to the New York Yankees Jorge Posada Foundation website. His son was born with a birth defect and he created a foundation which may be of some interest to you.
http://www.jorgeposada.com/html/jpf_about.html
hi Jan,
At 5 days old, my, now, 10 month old son was diagnosed with saggital synostosis (premature fusion of the seam on the top of the head). The surgery removed a 2 X 6 inch panel of bone at the top of his head and rehaped the point at the back of his head. at two and a half months old. My husband and I went through an emotional rollercoaster until we, after extensive research, and an expert second opinion decided we had no other option. (As young as 2 months, his head was rapidly malforming into a football shape visably affecting his right eye. Dr Peter Carmel at UMDJ performed the proceedure with amazing results. The prep and the surgury took about 4 hrs. (I'm told the actual proceedure lasted 45 min but I cried longer). The result was miraculous: both in appearance and recovery. We discovered that there are not many pedatric nuerosurgeons that practice in this area. Other than being constantly constipated, our son is now doing great. Good Luck
hi, i did know someome who's son had this same surgery. he did have a long recovery if i remember correctly. but he is doing fine and once his hair grew back you could not see the scar anymore. one thing that was scary for her(i am not trying to scare you, just being honest)was when he came out of surgery he was very swollen, but the swelling will go away in time.just prepare yourself for that, which i am sure the doctors will tell you the same. but the surgery for her son was succesful and helpful. i hope this was helpful.
Hi J.!
I know first hand what you are going through. My daughter had to have cranial recontruction at almost seven months old! She had I guess something similar to your son, the inital dx was frontal bossing, where the brain is being pushed forward. Now her surgery was the more complicated of two, and this is going back seven years. Her surgery took about 3 1/2 very long hours, she couldn't eat I think six hours prior, and that age its heartbreaking, but they are stronger then you think! She stayed in the hospital for four days, and would've gone home sooner, but she wasn't eating. I don't know what else to tell you, I can say not to worry, but that's unrealistic, if you need someone to talk to I'm here and will answer any questions. Where is he having the surgery? Well, good luck to you and your family!
Give google a try as well, type in craniosysostosis or craniosysostosis in babies and you will get all links associated with this. Take a look on www.hopkinsmedicine.org too. Gives you a detailed explanation with diagrams.
Good Luck J., I wish you & your family all the best.
J.,
You could definitely check into Cranial Sacral Therapy. This is a very gentle way to handle the bones in the skull as well as other good effects. It wouldn't hurt to try this right away to see if they could still get a little movement up there before trying surgery. I know one person, Dr. Teresa Wukich in East Northport who does this. I'm sure there are others on the web.
It is very upsetting when your child has to have surgery.
This always sounds especially frightening. That being
said, my girlfriends baby had the surgery and came thru
with flying colors. Thank goodness they have these
corrective surgeries. Good luck. I think you will probably be in worse shape than the baby. It seems it is
always that way.
Google "Scaphocephaly" with your computer...and from all that you read about it, make a list of questions.... make an appointment with the doctor who's going to be doing the surgery and make sure he/she answers all your questions.
If anything said isn't clear...ask again.
Take notes or take someone with you as you might not be able to take in or remember everything that is said during the appointment.
Also asked this doctor how many of these operations has he/she have done....ask about the success rate...and about the care that will be needed after surgery.
Then contact the Medical Asso. to check out the doctor...does he/she have a clean record or has malpractice suits against him/her.
If you aren't satisfied or comfortable with this doctor or the info go for a second opinion.
Just make sure you go to the best... Brain surgery is just that... brain surgery... My husband had to have brain surgery and I investigated first. For children and adults one of the best hospitals is NYU in New York City.. don't just go to a local hospital... go where this has been done often.. you'll feel way more secure. Another hospital is childrens in Philly.. or Johns Hopkins in Maryland. We went to Maryland.. because the surgery he needed had been performed there a few times... it worked wonderful... and I felt more secure because they've dealt with the issues we had.... good luck....
My friends son had this problem as a child. Had the surgery, and is now a wonderful, handsome and smart young man. His surgery was a great success. I can empathize with your concerns, but find a surgeon you trust, and follow his advice.Best of luck to you nd your family, Marianne
Hi. My nephew was born with a condition similar to what you describe. At 8 months old, he had the surgery and did great. Bounced back really fast and was able to attend his cousin's birthday party a few weeks later. He is now an active, healthy 9 year old and has had no problems. I wish you and your baby the best of luck.
