Need info re: surgery costs ASAP

[Andi]

Hi everyone,

Not everyone may know me, but a quick intro: I am a CranioGrownup who has Saethre-Chotzen syndrome and I had surgery for bicoronal synostosis when I was two in 1976. DH and I are trying to have children, and decided to pursue In-Vitro fertilization with preimplantation genetic testing to prevent passing on my cranio to our kids. (the whole story can be found in the "Syndromes" forum here, if you care to follow... :) )

Our insurance doesn't cover IVF, and they have once denied covering the preimplanation genetic testing. We have a second-level appeal hearing on October 3rd (!!!) where we can make our case in person about why they should cover these treatments for us. I have a request in to the craniofacial program at CHOP to get some stats already, but I would also like info from you guys who have recently had surgery! If you care to tell me (either here or via PM), I would like to know:

1) How many surgeries you your child has had and expect to have in the future (craniofacial surgeries, that is)

2) How much did the surgeries cost your insurance company?

3) Did your child have to have additional surgeries to correct eye problems (like strabismus) or hearing problems?

I'm especially interested in hearing from people whose children have Saethre-Chotzen or a similar cranio involving coronal sutures, so that it's a similar situation.

Thank you so much, and I love seeing your gorgeous kids here.

Andi

Edited to add:
Thanks again for the information everyone. I also spoke again with Dr. Bartlett at CHOP who told us that usually surgeries there can run over $100,000 each and easily into $200,000, and typically kids with SCS need two surgeries. Those were the figures I used in our presentation with the insurance company. I was a bundle of nerves, but DH helped out and we got our point across. We figured the committee had already made up its mind because they hardly asked us any questions after we presented our case. We were told we'd hear about their decision within 5 days, but we didn't hear from them for almost two weeks. Finally we got a letter this week saying that they were still denying us coverage of the IVF, but they WILL cover the Preimplantation Genetic Diagnosis testing!! So that's some good news. The reason it was covered was because genetic testing is generally covered when there's a history of an inherited condition and the results would be used to make a therapeutic decision. The PGD in our case is for precisely those reasons, so we're glad that we didn't have to argue any more over it with them.

Starting my second IVF cycle now, so I'll keep everyone posted as to how things turn out. Thanks for the support!

[Jennifer]

Andi- I answered in the other post, but you asked more questions here :) So I'll answer again (No syndrome that we know of- Single Suture Coronal)

1) Emily has had 2 surgeries. No further surgeries are expected.
2) Both surgeries cost approx $107,000 to the insurance company (if I'm doing my math correctly!) This does not include all pre-op/post-op, pre- CT's etc
3) No additional surgeries, though we did have to go to the optho and a PT to determine if there were eye issues. I would guess this cost an additional $1000-$2000 to the insurance company.

Hope that helps!

[Katie]

Hi Andi! Good to see you :hugg

1) How many surgeries you your child has had and expect to have in the future (craniofacial surgeries, that is)
He's had one and expected to have at least one or two more.

2) How much did the surgeries cost your insurance company?
If memory serves me right, roughly $80ish thousand including hospital stay. I know the surgeons' bill alone was about $17,000.

3) Did your child have to have additional surgeries to correct eye problems (like strabismus) or hearing problems?
Dillon's being followed by both and optholmologist for eye muscle problems which may lead to surgery, and an ENT for hearing loss. He's had tubes put in his ears, and may need hearing aids if his speech does not improve.
He has several other problems relted to what is probably SCS and is in PT, OT, and Speech therapy. He has braces on his ankles due to hypotonia and has recently been diagnosed with scoliosis. He'll be getting full spinal X-rays to make sure there are no vertabrae fusions.

Good luck Andi, I hope some of this info helps! I'd be more than willing to share some of our medical documentaiton.

[cheryl2]

Hi Andi,
My daughter and I have Saethre Chotzen syndrome. Clara is the first one in the family, however, to have cranio. My husband and I are debating if we should try for another. Clara had right coronal.

Your questions:
1. Clara had 2 surgeries for craniosynostosis. One CVR/FOA and one cranioplasty. I don't think she will need more.
2. Unfortunately, when we moved, we misplaced all the insurance stuff about how much they paid for the surgeries. It was around $90,000 per surgery I believe.
3. Clara has had 2 strabismus surgeries, 1 ptosis surgery and 2 sets of ear tubes. She has a profound hearing loss in her left ear and may get some type of hearing aid for that in the future. (Insurance doesn't usually pay for hearing aids though).

Good luck, hope this is useful.

[Andi]

Wow, thanks for all the quick responses! This is very helpful.

A translation question, if you please, though -- I haven't learned what all the surgical acronyms stand for yet. CVR = cranial vault reconstruction? FOA = Frontal Orbital Advancement?? I could be making all that up, but let me know if I have it right. I think the plastic surgeon at CHOP described these procedures but didn't use these acronyms, so I just want to be sure I know what I'm talking about. Ptosis and strabismus and hearing problems run in my family's experience with SCS, so I'll be sure to note that in our case.

[cheryl2]

You're right Andi. that is exactly what those acronyms stand for. I completely understand why you are doing this. When I became pregnant with Clara, I had no idea I had Saethre Chotzen, and no one in our family had cranio. I was the first person to have any sort of hearing loss. So my main worry was that my children may have ptosis and possibly hearing loss. Now we know the risks are a bit greater. I always wanted two kids though. It's hard to decide what to do.
Good luck :-)

[laurensmom]

Hi Andi,

I went to CHOP and I really loved them. My newborn was one week old when we got the diagnosis with my daughter and I don't know if we would have had him so quick if I would have known earlier about my daughter. Anyway, it is a tough decision and we are facing it with if we want more children.

here are the answers to your questions.

1. So far she has had one and it has cost about 90ish w/o the CT scans and the other appts.

2. If you are in PA and you have a child born with a disability there are assistance you can apply for to help with the cost.

3. Lauren has had 2 strabismus surgeries and is expected to have more.

Let me know if you need any more infor.

[Andi]

Thanks again everyone. Cheryl -- we were aware that my mom's side of the family had "the syndrome" even before my mom was born, but no one really questioned having kids because of it. During my mom's childhood (1940s) they did perform surgery for the ptosis her brother and sister had, but that was the extent of the surgical intervention. It wasn't until my mom and her brother had kids that they knew the name of it, and by then (1970s) they were performing surgery for the cranio. So I've always known I had a 50% chance of passing this on, and my personal surgery experience was pretty traumatic, so I felt we'd at least try to avoid passing it on. Our funds may run out before we are successful this way, but if that's the case so be it, we'll take our chances naturally and may wind up with a kid with SCS anyway. It was a hard decision, but I'm glad we're giving this a shot. I can at the very least say we tried what we could.

Denise -- is there a chance your daughter's cranio is a genetic syndrome, or are the docs saying it's a spontaneous case? I went to CHOP for my own genetic testing to start investigating all this, figuring that if we did have a kid with SCS we'd likely go there for treatment (we are fortunate, we live just outside of Philly). The genetics department was fantastic -- Dr. Zackai worked with us and was very helpful, and facilitated consultations with Dr. Bartlett in the craniofacial program and with fertility specialists to help us make our decision. While in the end we opted to do the IVF/PGD thing, I know that if we ultimately had a kid with SCS we'd be cared for very well by CHOP. I'm glad you had a great experience there.

Thanks again for your help -- I'll let you know if we got anywhere. We have a pretty stingy HMO, but we also have a good argument (I think!).

[laurensmom]

The Doctor said it was probably spontaneous case but we are doing their study to see if it is possibly genetic. We haven't gotten any results back yet. I am very happy their and am glad we only live 2 hours away. It's worth the trip. If you do have a child with it then you will be very well cared for and please look into having help by the govt. I can give you the info if you ever need it.

Good luck!!!

[Andi]

I updated how things turned out in the OP -- thanks for your help!!

[Katie]

Andi, I'm so glad to hear they are going to at least cover part of the process :cheer You're hard work and research has really paid off :hug I can't wait to hear how this cycle goes, keep us posted!