Finding a doctor?

[Lauren82409]

Hi everyone. My son has a CT scan scheduled for this Monday morning which will most likely confirm lambdoid cranio.

We are in central NJ. Our pediatrician sent us to the neurosurgeon who ordered the CT scan and said surgery is almost a certainty, and should be done very soon (like, within a month or two) for best results. The surgery would be done at Morristown Memorial Hospital in NJ. I'm not sure if I'm allowed to post the doctor's name?

I felt very comfortable with her, but now that I'm reading more about cranio (and specifically, the rarity of lambdoid) I would like to at least research other options for my peace of mind. I see that many of you are far away from NJ. I looked on the CCA website and see nothing for NJ and just one doctor/hospital in NY. Can anyone recommend any other hospitals or specific doctors that are nearer to me?

Additionally, as of Friday, my insurance rep is pressuring me HARD to go with an in-network doctor. But now that I've read more about lambdoid, there is ***no way*** I'm just going to pick an in-network doctor off the list because it's convenient. I know I'm gearing up for the fight of my life with BCBS.

So, basically--the current neurosurgeon is more than qualified, but I feel like I'm doing my son a disservice by staying with her because she's not one of the very very very best in the country. If anyone can point me in the right direction, please let me know. Thanks so much.

[Etinker]

Children's Hospital of Philadelphia is not "too" far away and does the surgery ALOT. About 4 a week. We were very happy with our care. It's also nice because since they do so many, the nurses in the PICU are very familiar with the care our cranio kids need. There are 2 Neuro surgeons and 2 plastic surgeons who do the surgeries and both are great. Anyway they have a great rep and have been doing the surgery for over 30 yrs. I'm not a lamboid mom but I would assume many of those surgeries would have to have been lamboid. I can give you their office number if you want to give them a call and ask them some questions.

I also know there are some NY moms on here so I'm sure they'll chime in too!
Good Luck - let me know if there is any other way I can help!
-Beth

[Max's Mom]

Hey there. I can't help much for Drs. in your area, but I do think it is wise to get a second and even third opinion, especially with a lamboid closure. We saw three docs locally and had a phone interview with an out of state (and out-of-network) doctor, and in the end decided to travel for our son's surgery next month. I hired Laurie the Insurance Warrior to write our appeal after Anthem Blue Cross refused to pay the network rate. She won an approval within two days. She's not cheap, but worth it. And if you can't afford it, she has a pretty good CD you can buy to help you write your own appeal. So don't let insurance dictate where you go. Make sure your decision is based on qualifications of the surgeons and the kinds of outcomes they have. Also, a good question to ask is how are the patients you've treated for this condition doing now? Also, under the surgery and testing section there is a pretty good list of questions to ask when you interview Drs. Worth taking a look at. Hope you can get some more answers from people local and that you find a good team of surgeons soon! Big (((hugs)))!

[Lauren82409]

Thank you both very much.

Etinker, if you can give me that number, I'd appreciate it. A friend of mine mentioned Philadelphia Children's and I dismissed it as being too far away, but now that I'm digging deeper, it may be the closest and best for us.

Max's mom (I'm Max's mom too!), thank you. Yup, now that I've read more about lambdoid, it's not as simple as sticking with my neurosurgeon. I'll need to ask her that list of questions and still get a second or third opinion.

I'm going to re-post this thread in Cranio Chat and hopefully get a few more responses locally.

[Etinker]

Hi Lauren,
The number for the Assistant, Maria, 215-590-2209 at the cranio-facial department is. She works with Whitaker and Dr Bartlett. Whitaker has done it much longer but now that he is older does it less. Bartlett is a bit younger but as I mentioned does the cranio procedure much more. You might just ask which has done more lamboid surgeries.
The neuro -surgeons are Storm and Sutton. Sutton bedside manner is horrible but I hear Storm's is much better. Maria can transfer you to them if needed. Especially for our suture (uni-coronal) the Plastic surgeon plays the lead role so that's who we had the most contact with. I know Audra15's daughter just had saggital done at CHOP and just had a neurosurgeon. I would guess though if you already have head shape changes you may want a plastic surgeon too. But I am definitely not a dr!
Hope this helps!
-Beth

[Nezzy]

You keep mentioning the NS, but not the craniofacial plastic surgeon. The plastic surgeon is the one doing the reconstruction, so I'd especially be interviewing and researching them. You are on the right track to find the best doc for your son. don't let your insurance tell you where to go. You go find the best doc and then make them pay. Your son deserves the best. Have you looked at Dr. Staffenberg in NYC? I can not personally attest to him, but have heard good things about him.

[Avery's Mom]

No advice except get multiple opinions if you have to. Avery was a right lambdoid baby too. We were fortunate that we already had a relationship with our CFS so did not look any further.

[dannlark]

Welcome! I would second Dr. Staffenberg in NYC. He's very well versed in cranio and since Lambdoid IS so rare, he probably has had more cases than the average surgeon. There is also Dr. Fearon in Dallas, TX whom we used. He's amazing and also a Dr. that specializes in craniosynostosis repair, one of the busiest Dr.'s for this in the nation. He's a pediatric craniofacial surgeon too. There's a Mom here who's son was lambdoid as well and she used Dr. Fearon with good results. She'll contact you shortly, I imagine. I agree, I'd be researching CFS's first...they are the sculptors for our children's heads.

[Momof2Boys]

Lambdoid is so rare, I asked our NS and he said he has done 5 surgeries for this type. He is also is a practice that was highly recommended by several friends and doctors in Orlando area. It is scary, but do as much research and ask lots of questions. You have to be up front with these doctors.
Wishing you the best in finding a great doctor. Please send me a message if you have any questions about surgery.

[Max's Mommy]

http://www.cappskids.org/board/forumdisplay.php?s=&forumid=47

[*jules*]

Hi Lauren. I wasn't sure if I've welcomed you or not, so welcome!

I don't have any suggestions regarding doctors in your area, but understand how stressful it is to find a highly experienced surgeon that you're comfortable with. I agree that with lambdoid being so rare, it's best to look at several different surgeons. Best of luck with your search. Keep us posted please :)

[annegirl]

I'm not sure if you're interested in coming down to Maryland, but we used Dr. Simmons (plastic surgeon) and Dr. Ahn (neurosurgeon) at Hopkins, and we we were very happy with them. They did a fabulous job with my daughter. She was 11 1/2 months old when her surgery was done for her coronal snynostosis.

[frankiesmom]

Hi

Sorry I am not on here much anymore my job is overwhelming not to metion two kids going in different directions.
I live in NJ, my son had his suregery in NYC at Mt Sinai. There is also a huge staff at NYU
I loved my cranio facial surgeon and the neuro surgeon he chose. My son had right coroal-i am not familiar with lamdoid. I will be happy to provide you with their names if you would like? Let me know. It is a difficult decision but when you find the right doc you will know!