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Dr for Craniosynostosis - anyone has a great one??
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amother




OP
 

Post  Fri, Jul 31 2020, 6:32 pm
Hi! Anyone have experience with Craniosynostosis with any of their children- I’m looking for a top dr for a second opinion.

Thank you!!!!
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amother




OP
 

Post  Sat, Aug 01 2020, 10:44 pm
Bump?
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amother




Denim
 

Post  Sun, Aug 02 2020, 12:15 am
I used dr mark souweidane with Cornell.

My son had sagital craniosynostosis
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amother




Azure
 

Post  Sun, Aug 02 2020, 1:06 am
My sister had a child with craniosynostosis 9 years ago. She used dr. Thorne in NYU Along with dr. Wisoff and was very happy
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amother




Jetblack
 

Post  Sun, Aug 02 2020, 1:08 am
How about a super competent one in nj? Anyone?
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amother




OP
 

Post  Sun, Aug 02 2020, 10:15 am
amother [ Denim ] wrote:
I used dr mark souweidane with Cornell.

My son had sagital craniosynostosis


Who suggested this dr? Meaning how’d you hear about him- never heard his name. We’re you happy with him?
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amother




OP
 

Post  Sun, Aug 02 2020, 10:16 am
amother [ Jetblack ] wrote:
How about a super competent one in nj? Anyone?


Would love to hear names- as I’m in NJ.
though at this point if I hear a great name- I’m ready to travel anywhere.
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anonymrs




 
 
 
 

Post  Sun, Aug 02 2020, 11:30 am
My friend was planning to use Dr. Bartlett at CHOP. She didn't end up doing the surgery at all, but would've used him after extensive research if she did.
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amother




Denim
 

Post  Sun, Aug 02 2020, 12:45 pm
amother [ OP ] wrote:
Who suggested this dr? Meaning how’d you hear about him- never heard his name. We’re you happy with him?


I went to multiple doctors (chop, wisoff goodrich ( who is not around anymore but I heard of someone that used someone from his office) and consulted with many more). Each one pushed their method stating that the other ones are not good...

I was concerned about blood loss, scarring.... dr souweidane only made one small incision under the kappul area and microscopically cut out the extra bone. The only downside of this procedure is that u need helmet therapy. However I felt the short term helmet compared to a life of a scar (that can look scary as if there was something wrong with the brain...) was worth it. And also the full vault is massive procedure...

I was extremely happy with the results. My son is now 2.5 years old. I believe procedure needs to be done at about 4 months.
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amother




OP
 

Post  Sun, Aug 02 2020, 1:49 pm
Thank you for all the replies!!!

I’m so happy you had a great experience!
Know of others that used Dr Souweidane for other types of craniosynostosis? Does he do this a lot?
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byisrael




 
 
 
 

Post  Sun, Aug 02 2020, 2:18 pm
Have you reached out to Shuky Berman to see who he recommends?

He was incredibly helpful for us with a different craniofacial condition (treachers collins) which entails multiple cranio-facial procedures at different stages

I personally did not like Dr. Bartlett's approach, but he does have a fantastic reputation. For our issue we are using Dr. Jeffery Fearon in Dallas.
We communicated with many of the top cranio-facial surgeons .I did not like that Dr. Bartlett does so much "beauty plastic surgery" and the feel I got from Dr. Bartlett was that he would recommend the procedure that made the most money even if there was a cheaper/less invasive option out there.

Shuky Berman was really really helpful - I really recommend starting with whoever he recommends (he usually gives a couple of names) and then start your research from their. It is important to ask for pictures of results (not always can they provide but sometimes it is possible) and also how often they do the procedure.
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amother




OP
 

Post  Sun, Aug 02 2020, 2:37 pm
Basically- for my child it’s hopefully a one time surgery - which we did 3 years ago.

We did loads of research back then and ended up using a plastic surgeon. (With a neurosurgeon attending as well)

Right now- I’m a bit concerned about one thing I’m seeing- though the surgeon I used is not. I would like a second opinion.

I want a dr that’s going to give me an honest opinion and not jump to a second surgery. (I’m concerned that Fearon may do that)
So- that’s really what I’m looking for.
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amother




Papaya
 

Post  Sun, Aug 02 2020, 4:01 pm
Dr. Bartlett or Dr. Taylor at CHOP should be your first choice.
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amother




OP
 

Post  Sun, Aug 02 2020, 9:25 pm
amother [ Papaya ] wrote:
Dr. Bartlett or Dr. Taylor at CHOP should be your first choice.


I was there back in the beginning- looking for a diff option
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amother




Papaya
 

Post  Sun, Aug 02 2020, 10:26 pm
amother [ OP ] wrote:
I was there back in the beginning- looking for a diff option


They are pretty conservative team. I understand getting 2nd opinion though. At NYU I once saw Dr. Flores in plastics.
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amother




OP
 

Post  Sun, Aug 02 2020, 11:38 pm
amother [ Papaya ] wrote:
They are pretty conservative team. I understand getting 2nd opinion though. At NYU I once saw Dr. Flores in plastics.


Did you use them (chop) for craniosynostosis surgery?
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amother




Lime
 

Post  Sun, Aug 02 2020, 11:52 pm
2 pediatric neurosurgeons:
1. Dr. Recinos, Cleveland Clinic
2. Dr. Tobias, Westchester
They each work with plastic surgeons as a team. One thing I found a little difficult is the plastic surgeons seemed a bit “scissor happy” while the neuro surgeons were more conservative.
My child’s issue was the metopic suture, which I think is rather simple to treat/correct comparatively speaking.
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amother




OP
 

Post  Mon, Aug 03 2020, 12:45 am
amother [ Lime ] wrote:
2 pediatric neurosurgeons:
1. Dr. Recinos, Cleveland Clinic
2. Dr. Tobias, Westchester
They each work with plastic surgeons as a team. One thing I found a little difficult is the plastic surgeons seemed a bit “scissor happy” while the neuro surgeons were more conservative.
My child’s issue was the metopic suture, which I think is rather simple to treat/correct comparatively speaking.


So based on what your saying- I’m better off going to a neurosurgeon for this opinion as opposed to a plastic surgeon?
I was told to rather use a plastic surgeon for the surgery (which I did) because they’re better with the keeping the cosmetics in mind as well)
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byisrael




 
 
 
 

Post  Mon, Aug 03 2020, 4:39 am
My experience with Dr. Fearon is that he will give you a second opinion without charging by email and is actually quite reluctant to go to surgery. You have nothing to loose by sending an email with pics., explaining what your concerns are and what the surgeon you used says.
Dr. Bartlet wanted us to go thru multiple surgeries at different stages and Dr. Fearon had us wait a few years so that we would be able to avoid that, so I doubt he would jump to surgery.

Again I would recommend asking Shuki Berman who he would recommend for a second opinion.
some other names that came up when we where doing research that I haven't seen yet upthread;

Dr. Richard Hopper (SCH)
Dr. Cory Resnik (BCH)
Dr. Leonard Kaban - retired at Mass. gen.
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amother




OP
 

Post  Mon, Aug 03 2020, 10:30 am
byisrael wrote:
My experience with Dr. Fearon is that he will give you a second opinion without charging by email and is actually quite reluctant to go to surgery. You have nothing to loose by sending an email with pics., explaining what your concerns are and what the surgeon you used says.
Dr. Bartlet wanted us to go thru multiple surgeries at different stages and Dr. Fearon had us wait a few years so that we would be able to avoid that, so I doubt he would jump to surgery.

Again I would recommend asking Shuki Berman who he would recommend for a second opinion.
some other names that came up when we where doing research that I haven't seen yet upthread;

Dr. Richard Hopper (SCH)
Dr. Cory Resnik (BCH)
Dr. Leonard Kaban - retired at Mass. gen.


Thank you very much! Think I may just do that- email Fearon- did that in the beginning- and he was very helpful (For various reasons ended up not using him). Reason I ddnt want to email him now is because based on hearing feedback about him I keep hearing that he “fixed” up a diff drs mistake. Don’t want that to be his automatic response. Your saying he doesn’t jump there so fast. So I’m happy to hear that.

Left a message by Shuki Berman to heat his opinion.

There’s a great Facebook group for this if you’re interested- may find it helpful for yourself to skim through it .
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