new from albany, ny

[magnoliasmom]

a month ago my now 4.5 month old daughter was diagnosed with unilateral coronal synostosis . . . originally we had planned to go to boston childrens in the new year, however, insurance denied us, so we must stay in albany.

anyone ever use Alb. Med for this?

So scared. My baby girl.

Another strange thing - the dr. doesn't want to CT Scan her.... should i demand one?

[Lauren]

Welcome to the site! I'm sorry you are already running into issues.

If you want Boston, there are two other hospitals here that do the surgery; Mass General and New England Medical Center. We met with the doctor at MGH, but ultimately chose NEMC. Children's is funny about insurances, many of them are out of network which may be why your insurance denied them. Both MGH and NEMC took our insurance and while I didn't love the doctor at MGH, I know other families who used him and were happy with him. I can't say enough about NEMC. They were fantastic. If you would like the number to our doc, I would be happy to pass it on.

[Janet]

Welcome to cranio kids!!! It's totally natural to be scared, I'm scared everyday thinking about my daughter's surgery next month.
I would think that a CT scan is necessary for the operation??? Maybe you should ask the Doctor how many cranio surgeries they do a year.

[marisajo]

No CT for unilateral coronal? I would run away... How many coronals does the Albany team do a year? Coronals seem to typically be the toughest cases, with more eye issues and reoperations needed than the other sutures. Find a ns/ps team that you truly trust.

[magnoliasmom]

i know - that's what freaks me out

i haven't met the whole team yet - i meet the ps next week
i'll discuss with him my fears of not having it done -

[Katie]

First, welcome to Cranio Kids! I'm glad you found us :hugg I would question why they don't want to do a CT scan, that seems odd to me. Most Dr's, especially in coronal cases use it as a "map" during surgery. Has there been an X-ray done? Is it possible they feel they have a good enough view with that?
You can submit a grievance to your insurance company about why you would prefer a different hospital. If you can prove to them that another hospital is more equipped and experienced to handle this kind of surgery, they may OK you going out of network. If you can gather numbers (how many surgeries per year each hospital does, how many days the average stay at each is, how many years the dr's have in experience with cranio, etc...) it couldn't hurt to try. good luck to you, let us know how everything is going :hugg

[Kari]

Hi and welcome.
I agree with everyone else being wary of no CT scan, but how was your little one diagnosed with cranio? Did they do a CT scan for that? If that's the case, our surgeons did not do a CT scan before surgery-they went on the scan that she had when she was first diagnosed which was ordered by our pediatrician.

If that's the case, I wouldn't worry about it. As I said we had one scan before surgery-not ordered by surgeons-and we had one of the best teams in the country perform her surgery (in my opinion).

If they are only going on an xray, then yes, I would definitely be concerned and would demand their reasons and research into how many cvrs have been performed etc, as Katie mentioned.

I'm also originally from upstate NY and know that there are doctors at Upstate Medical in Syracuse who perform these surgeries. Something to look into. I know it's probably about a 3 or so hour drive for you.

Take care and let us know how it goes.

[Candice]

:colors
I'm in agreeance with the others on the CT scan issue. My daughter had a CT scan at our hospital which was ordered by her ped so we could take it with us to Denver Children's. The doctors walked in the room and right away were like, "Yup, that's a Sagittal baby." I was perplexed by this and asked them if they had looked at her scan before seeing us, and they hadn't, it was obvious by her head shape, but they looked at the scan anyway with us there and pointed out the fused suture. I'm not sure if the craniofacial surgeon used the scan in reconstructing her skull or not, her post surgery follow up is next week, so I'll find out then. Anywho, I know that coronal is way more difficult than sagittal, and I certainly wouldn't feel comfortable until all the bases were covered. Like a pp said, find out how many surgeries of this nature the team has performed, etc. Good luck on this journey, and welcome again! We are here for you!!:hugg

[amommy22]

What NS did you see at Albany med?! My son Trey was diagnosed with metopic cranio by Dr. Waldman at Albany med. I wasnt satisfied with the info/treatment plan given me by him and after alot of thought and encouragement to follow my instincts I am in the process of get a referral to see a NS in NYC. Is NYC an option for you?

[magnoliasmom]

yes, it was dr. waldman.

my initial consult/diagnosis was in Boston - insurance wouldn't cover out of network - gave me to Dr. Waldman.

I've met him just once - i'm not sure how i feel about him - im very confused.

what did you think of him? did you meet with dr noonan?

[amommy22]

I didnt see dr. noonan .... i privated messaged you about my sons visit and what was said ... too much to type here. My son also has a genetic condition, so he has a genetic ped. and both his genetic ped and his regular ped said that Dr. Waldman is amazing at these surgeries, one even said he is "the guru of these proceedures" and "if i had to have it done i would feel at ease knowing he is doing it". And my sons genetic peds. office is AMAZING!! They are totally honest and forth coming, and if there was any reason to doubt Dr.Waldman they would let me know. As i said in my private message with you i dont think he is a bad doctor, i just felt rushed out of the office and that he didnt answer my questions. I had some significant questions, things that really worried me that he never responded to and i cant get ahold of him on the phone or via email so my only way to get answers, and for peace of mind, is for a second opinion.