endoscopic vs. incision

[snhancock]

I just found out that the neurosurgeon we thought we chose doesn't do surgery until 12-14 months of age and the lady that told me 4-7 months was not talking about metopic cranio (even though I told her). I'm really frustrated about this because we had just gotten ourselves prepared and were ready to get this behind us.

Anyway, the surgeon that is closer (New Orleans, Dr. McBride) is covered on our insurance despite me thinking she wasn't (Anthem spelled her name MC Bride so when I searched, she wasn't found). I am going to try to get an appointment to meet with her and I know she does the endoscopic surgery with helmet therapy afterward. I'm just hoping to hear some opinions and to hear people's experiences with the different types of metopic surgery. We are going to meet with both if necessary but with New Orleans being closer, if we like Dr. McBride, we will probably go with her unless we really don't like the idea of endoscopic.

Sorry if this is rambling, I just don't know where to start with all this. I think I'm covering all the bases. Thanks!

Somer

[amizzle]

we did the endoscopic procedure at 10 weeks and were thrilled with the results. Our son was sagital not metopic but i have seen metopics who also had the endo procedure. There is no "right" procedure do what you feel comfortable with. here is a website that might help you learn more (http://craniosynostosis.net) feel free to send me a private message if you want to know more about our experience

[greenprincess]

hi i was read your post and you said that the nearest doctor would be in new orleans but we have a doctor right here in baton rouge. we went through the children special health services that they do a sliding scale and it doesnt matter what kind of insurance you have. here is their number if you would like to give them a call. almost all of their doctors work at the neromedical center. you should get in contact with a ms. sharon cage. this is everything they cover
Arthritis
Audiology
Cardiology
Cleft Lip & Palate
Cystic Fibrosis
Neurology
Neurosurgery
Ophthalmology
Orthopedic
Otology
Reconstructive (Plastic) Surgery
Scoliosis
Spinal Cord
Urology


here is their number i hope this helps you
(225) 242-4860 - 353 N 12th St, #95,

[snhancock]

Thank you. We have a neurosurgeon here in BR but there is no craniofacial team. We see Dr. Soleau at the Neuromedical building. He told us he doesn't recommend preforming this type of surgery without a craniofacial team since it could involve reconstruction of her eyes. He referred us to the Craniofacial team at UAB Children's, one in Dallas, and then one in New Orleans. We will likely meet with the one in New Orleans and Birmingham.

[amizzle]

a lot of people on CK have traveled to dallas and have amazing outcomes. we traveled to san antonio to have surgery with the dr's we felt most comfortable with and have never once regretted that decision

[Tawnia]

If they are doing reconstruction of her eyes they are not doing endoscopic. Endoscopic only releases the suture...it doesn't do any reconstruction. My daughter had a CVR for metopic (not endo) and they generally do an FOA with it (frontal orbital advancement). It would depend on how severe it is.

[snhancock]

thanks tawnia! that is precisely why i want to talk to both. i have no idea what our options are or how severe she even is. i just want to know that i am making an educated decision in all of this. i forgot to mention that the surgeon in dallas isn't covered on our insurance so that is why we aren't traveling there.

[Tawnia]

You're welcome. yes Dr. Fearon is great (Dallas) but there are MANY MANY other great surgeons out there too. :) The most important thing is that you find one you are comfortable with and that you can trust!

[greenprincess]

We see doctor joseph at the neuro center and doctor soleau was suppose to asst. in my son surgery yesturday. but they cancel i didnt know anything about new orleans untill yesturday My ped is trying to get us in to see them soon we are only about 45 mins from new orleans so it wont be that bad to go see them. I just want to be on the other side of this I am emontionally drain and so is my family. im glad you are getting the help you need