Any lambdoids out there that opted for no surgery??

[Mama2GusGus]

Has anyone decided NOT to do surgery with regards to Lambdoid synostosis?

I know this is a long shot but I just have to ask.

Thanks for hearing me out and I hope to see some response. :pray

[maztec]

I don't know if you are still around. I see that you were in Seattle at one point. Why did you choose to do the surgery rather than opt out - I gather you went with surgery from your other posts? Was opting out presented to you as a viable option? The initial repsonse to our daughter was that she may not need surgery for her lambdoid synostosis, but on reading I have not found anyone who actually opted out or even seriously considered it. If you get this message or are still around, I would love to hear why you chose not to opt out.

I have PM'd you also for an answer.

Apologies to everyone else for digging up a two year old thread.

[Mama2GusGus]

Hi,

We were given the option of opting out and we actually did seriously consider it. We had a bad experience with the doctors in Seattle and ended up having the surgery done in Texas with Dr. Fearon, but that isn't the reason we considered opting out. At ten or eleven months old our sons synostosis didn't seem severe and we considered that he might be able to live a fine and normal life without going through the risk of surgery. After doing a lot of research we found that with the single suture lambdoid synostosis that our son had it can cause more and more severe twisting of his skull and facial features and could cause problems with his hearing and as with all synostosis there is the possibility of increased pressure on the brain later in life. After a lot of online research and consultations with other families that had had surgery and consulting with the Seattle doctors and Portland doctors and Dr. Fearon in Texas bot through email, in person and on the phone. We decided for our son it was better to have the surgery and avoid the facial deformations and possible hearing problems and other risks involved with opting out. Talking with Dr. Fearon on the phone was very helpful and informative and he was very happy to give us his time. He is one of the experienced Doctors in the country when it comes to cranio synostosis and is very willing to help out. When we were dealing with the doctors in Seattle they were a bit inexperienced at the time and were not confident that they would be able to do as good of a job especially since our son had a single suture lambdoid synostosis which is the rarest occurrence we decided to find some where with more experience to do the surgery but that but a few years back. We also considered the endoscopic procedures but after talking with a family in Florida that had had that done we opted for surgery. The endoscopic procedure involved years of expensive helmet therapy that followed where as with the surgery that our son had we were on a plane back home in a couple of days and he hasn't had any complications or problems since.

I hope there was some helpful or useful information in there. It was a long process for us and we had to fight our insurance company for a year to get it paid for but in the end we have survived it all and our son is very happy and doesn't even know that it happened.

If you would like any more information please don't hesitate to ask.