Best surgeons/hospitals (regardless of location)

[Rachel]

Hi,
I am so glad to have found this forum. This week my 5 week old was diagnosed as having craniosnotosis - specifically the more rare metopic type where the bones in the front have fused. The pediatric cranial plastic surgeon at Children's Memorial Hospital in Chicago took one look at him and felt his head and read the x-tray - and said he was "textbook" metopic.

Does anyone have a listing of the best children's hospitals in the country who treat cranio, or specifically metopic? All of the postings I see ask for the best doctors/hospitals close to the home. But I'm looking to find a "best" list in case I want a second opinion and am willing to travel.

[Jennifer]

That would be interesting to see if there was a 'best' list. I've never seen an official one. I personally think my NS would be one of them- but I had an awesome experience w/ them.....My husband actually asked her (the NS) that if her child had cranio, who would she have operate.....She stated that she would prefer to do it herself, but would not be allowed to, then she said she had to think about it.....She came back with-- there is only one other NS/PS team I would allow to operate on my child....they live in (LA or GA- sorry don't recall which...) She was pretty adimant about it... When we told our pedi that we had gotten a 2nd opinion (at the original time of diagnosis), she was kind of shocked....she stated she understood the need, but if it were her child, there was no one else she would even consider...so that made me feel extremely comfortable with our choice.....
I've rambled now....You really need to find someone you are comfortable with (it helps if you can get multiple opinions- gives you more to base the decision on). Ask how many metopic cases they've done, how long they've been doing, any cases against them, etc...

[jbanever]

My son had his surgery at Yale/New Haven hospital in Connecticut. We saw Dr. John Persing and Dr. Charles Duncan. They both specialize in craniosynostosis and I could not have been happier. Sam did wonderfully. They were the most amazing doctors. His incision is practically invisible and they were just awesome. I can't say enough!

[Katie]

I can recommend a couple of wonderuful places, and I know some of the other parents will have input also. Dillon had his surgery performed by Dr. Ian Jackson and Dr. Karol Zakalik. Dr. Jackson is a Scottish man known world wide for the work he does, and travels all over the world doing surgeries. He is considered one of the "pioneers" in surgeries of this type, having done them for over 40 years. If you have ever seen the Discovery show, or read the book "The Boy David", Dr. Jackson is the surgeon who adopts the boy. He works out of Providence Hospital in Michigan, came here from the Mayo Clinic. Dr. Zakalik works out of a different hospital, but they perform surgeries together out of Providence.
There is also a clinic in Dallas that specializes soley in craniofacial disorders. http://www.thecraniofacialcenter.org/meet_office_staff.html

Let me know if you would like Dr. Jackson's info!


:welcome

[Rachel]

Thank you all so much for your replies. If you travel out of your geography for a surgery - do all of you follow up appointments need to be with that same out-of-state surgeon? I'm assuming that if I bypass my local Chicago hospital and have another surgical team do it - then it's not appropriate follow up (or maybe even professional offensive) to have the local team follow up on somebody else's work?

For anybody who traveled for the surgery and also traveled for the follow ups - on average how many trips did you need to make? Thank you so much.

[cheryl2]

Hello, Clara's surgery was done at Stanford University by Drs. Schendel and Shuer. We have since moved to Connecticut and have had followups at Yale, with Dr. Persing, who did jbanever's child's surgery. WE really liked Dr. Persing too. He did Clara's "touch-up" surgery.

[Mason's Dad]

I can recommend Wake Forest Baptist Hospital (part of Wake Forest Univ.) in Winston-Salem, NC. Dr. Lisa David is great and has an outstanding bedside manner. She and her colleagues do all sorts of procedures and work as a team with neurosurgeons. http://www1.wfubmc.edu/plastic/

[Mom2William]

I can recommend Duke Hospital in NC with Dr. Fuchs PN and Dr. Marcus. They are part of a craniofacial team and this is their speciality.
I have talked with people who traveled quite a distance for Wake Forest for the spring mediated surgery and they also go back there for follow-ups.
Our Follow -ups are at 2 weeks, 3 months, 6 months, 9 months, then 1 yr we will have CT scan, then every yr after that until he is 5 yrs. old.

I agree with the others to find a surgeon you are comfortable with and go with that one.

[Danandtricial]

our n/s was Dr. Dias at hershey medical center in hershey PA. Great with the kids and all around an awsome doc. I don't know his experience with metopic but he worked a miricle on emily's saittal.

[Matthews Mommy]

New Jersey- The neuroscience institute at J.F.K. Medical Center
my sons original surgeon went private DR. Carlo Deluna
New York- Montefiore Children's Hospital
Dr. David Staffenberg- PS
Dr. James T. Goodrich-NS
http://www.montekids.org/services/leadership/craniofacial/
http://www.njneuro.org/fp/pedineuro.asp

[Jules]

Rachel,

Our NS is Dr. Michael Handler. He is the Chariman of Nuerosurgery at The Children's Hospital, in Denver. He did a wonderful job with Gabe. We are two years post-op and have had no issues. The Children's Hospital here in Denver is porbably one of the finest in the Country. I can't say enough about this hospital and Dr. Handler. :cheer

I have included a link.

http://www.thechildrenshospital.org/public/pf/detail.cfm?ID=772


What sold us on Dr. Handler was his surgical ability. Right before Gabe was born, Dr. Handler had saparted conjoined twins. We figured if he could do that, he could fix Gabe's melon. Here is a link to an article about the Twins.

http://sunday.ninemsn.com.au/sunday/cover_stories/article_1160.asp?s=1


Hope you find the perfect doctor and all goes well. You will be in our thoughts and prayers.

[Melissa]

All of Bryson's craniofacial operations were done by Dr. Louis C. Argenta at Wake Forest University Baptist Medical Center (WFUBMC, for short), in Winston-Salem, NC. (See Mason's Dad's reply for a link.) We absolutely love this man to death! Dr. Lisa David also assisted on quite a few of Bryson's operations when she was training under Dr. Argenta, and if Dr. A were to retire before Bryson is completely done with his surgeries, then we'd have Dr. David take over as our first choice. Dr. Argenta is world-reknowned and travels to other countries to teach other doctors how to do these meticulous operations (I think he probably does some operations in other countries, too, though I haven't heard specifically).

[Luvmyboys]

Although Tyler hasnt had his surgery yet.We go to UNC Childrens Hospital in Raleigh NC.The NS my son is seeing is such a caring man great with kids, he doesnt try to hide anything from us he is straight forward and makes sure you get all the information you need.I had 3 pages of questions and he sat there through every page and answered every question I had.He also takes photos of the patients he has worked on and OMG they look soo good.Everyone here from Peds to the developmental specialist ask who we are seeing and when we say Dr.Van Aalst they say o he is so great and does wonderful work.And from what I have seen on other kids that he does.But he deals with all kinds of stuff .He had a patient who him and his parents were driving 48 hrs to come see him so I guess that says something about him.Other wise I wish you luck and keep us updated!

[mom2mykidos3]

We went to Primary Childrens Medical Center in SLC, utah. Our Ps is Dr. Schmelzer. He is a cranialfacial surgeon. He is fairly new to PCMC, but he is wonderful. I really feel like he is up to date on all the newest technology. He is very personal too. I know I have heard of a lot of docs that don't have very good bed side manner. He is great in that way. He is always willing to try and answer all of our questions, and he never makes me feel like I am crazy.

[saraweise]

Joseph's ns and ps was one person, Dr. Ben Carson of Johns Hopkins. We were told he was the best around us. We were totally not prepped for what laid ahead (who is?) and went with his recommendations. Dr. Carson was and continues to be wonderful with Joseph! It was a hard road but a year later Joseph is a joy and completely healthy!

[plukids]

Oh I am sorry I did not see your post sooner. If you live near Chicago go see Dr. Ruge! We LOVE him. He is at Yackman Childrens Center at Lutheran General in Park Ridge. I know another cranio family who went to him and I know several families who have had Dr. Ruge as a neurosurgeon for brain tumors and cysts etc.... He is just AWESOME! I was so nervous and I asked around a lot. I am a nurse and know a neonatologist who did some of his residency under Ruge and said he would not even consider anyone else. I also have a friend who is an OB whose son had a tumor and Ruge did the surgery. I could go on and on but I think you get the gist. Here's a link with info about him: http://www.advocatehealth.com/db/physref/Physician_Profile.html?pid=1998
I would be more than happy to answer any questions PM me! Good luck in your search!!

[alexw21]

I would recomend speaking with Dr. Fearon at Dallas Medical city. He is a childrens cranio specialist and works with some wonderful doctors there. He has done a wonderful job with our little Natalie, and has had doctors from all over the U.S. study with him. Plus he is a very nice doctor, easy to talk to and generally cares about his patients and the families.

[Connor's Dad]

Glad to hear someone else has used Dr Fearon. We have surgery scheduled in Dallas on the 17th. We have seen and talked to many Dr's in SE and everyone wanted to do a different surgery and felt there procedure was the best. We talked with Dr Fearon many times and were very comforted. He has made himself available to us, is very knowledgeable, and offered us lots of advice. Without actually meeting we have recommeded to another local couple who is also going to Dallas now.

[mom2mykidos3]

I just wanted to post a little about Dr. Fearon. My PS worked with him and said he is the best in the nation. Or at least that is what his opinion is. I don't know him, but my PS is wonderful.