Yes... another post by me!!! I'm full of questions!!

[c0urtnee]

Hi!
I was thinking about the actual surgery yesterday. Were plates used an any instances here? My doctor feels that the time to talk about the actual surgery is at the pre op appt the day before. He wrote a book, with a chapter on craniosynostosis. There are graphic pictures of his actual technique and exactly what he does. No mention is really made of absorbable plates, but oh my, they look like huge gaps too big to be left open. I mean, if you're suppsed to be careful around a soft spot, what if the whole dang top of their head is a soft spot!?!
Thanks -- Im sooo worried.
Talking about it really helps!

[craniomommynbaby]

Simon's surgeons put his skull together with absorbable plates and screws. They dissolve over time. A few surgeons still use metal plates and screws and need small surgeries later to remove them.
There will still be soft spots, but the skulls are pretty resilient.

[Katie]

Dillon did have disolvable plates as well as titanium plates, but he was multi suture so I don't know if tha tmakes a difference.
And don't be worried about asking too many questions, that is what we are here for! Even if we don't always have the answer, we can share our personal eperience.

[KALEMSMOM]

Kalem had dissolvable plates and screws. Here's a few pics to help ease your mind. My son is 1 year post-op and in these ct scans you can clearly see the difference. You can also see the plates and screws, especially in the last scan and these are one year post-op.
before surgery
http://i23.photobucket.com/albums/b357/SCorriveau/Kalem/surgeryCTscan026.jpg
right after surgery
http://i23.photobucket.com/albums/b357/SCorriveau/Kalem/surgeryCTscan001.jpg
one year post-op
http://i23.photobucket.com/albums/b357/SCorriveau/Kalem/kalem1yrpost.jpg

He still has a very large soft spot on the right side of his head but his Dr. mentioned that they will look at it in 2 years and go from there.

[plukids]

Same here....dissolvable plates. We are 14 months post op and I can still feel the plates and screws. We did not have a post op CT so I am not sure how much they have dissolved but my guess is quite a bit. Our surgeons told us 18 months time is what it takes on the average to dissolve.

[Rhonda O]

Zachary also had dissolvable plates and screws. We were told that it could take up to 2 years for them to dissolve.

[lucsdad]

is there a web site that explains the CVR surgery in detail??
lisa

[Connor's Dad]

is there a web site that explains the CVR surgery in detail??
lisa


I don't think you will find. We talked with 7 different Dr's in 6 different states and everyone wanted to do a different procedure. There were a few the said they did CVR and everyone described it different (from actual procedure to recovery time, to results). In your search I recommend you find someone with lots of experience and proven results.

Connor had posterior CVR for sagittal, had no plates or screws, no helmet therapy and is doing GREAT!

[c0urtnee]

I don't think you will find. We talked with 7 different Dr's in 6 different states and everyone wanted to do a different procedure. There were a few the said they did CVR and everyone described it different (from actual procedure to recovery time, to results). In your search I recommend you find someone with lots of experience and proven results.

Connor had posterior CVR for sagittal, had no plates or screws, no helmet therapy and is doing GREAT!

I see you are here in Alabama too. What doctor/hospital did you use?

[c0urtnee]

Is a strip craniectomy and CVR interchangable -- is it the same thing?

the pictures in the book published by my doctor shows two strips running parrallel to the suture, and cuts made along both the front two and back two (sorry i forget the names of these) not the metopic in front middle but the side two etc.

if anyone wants to see the published chapter let me know and i will try to scan in it one day when i remember to grab it on the way out the door!

[Matthews Mommy]

Matthew had a strip caniectomy and no plates or screws yes at first his head had a larger than normal softspot, but he was absolutely fine. We were very careful and he made it through....the down side he has an open space and needs a bone graph in the future.

[Connor's Dad]

I see you are here in Alabama too. What doctor/hospital did you use?

We ended up in Dallas, TX with Dr Fearon and could not be happier with results. We saw local, went to Atlanta, & New Orleans and talked with and sent CT to Augusta, Vanderbilt, Dallas & Chicago before deciding to go to Dallas. As previously stated everyone would do a different procedure, with different results and recovery, and naturally everybody does the best - very hard decision.

I would never tell someone where to take your child (especially with something this big), but I will say if I have another child and the child has a cranio condition I will absolutely go back to Dallas.

[c0urtnee]

Matthew had a strip caniectomy and no plates or screws yes at first his head had a larger than normal softspot, but he was absolutely fine. We were very careful and he made it through....the down side he has an open space and needs a bone graph in the future.
Did the doctor warn you that a bone graph could result? Was it ever mentioned before, or have they said that its really rare to see? Anything to that effect?

[c0urtnee]

We ended up in Dallas, TX with Dr Fearon and could not be happier with results. We saw local, went to Atlanta, & New Orleans and talked with and sent CT to Augusta, Vanderbilt, Dallas & Chicago before deciding to go to Dallas. As previously stated everyone would do a different procedure, with different results and recovery, and naturally everybody does the best - very hard decision.

I would never tell someone where to take your child (especially with something this big), but I will say if I have another child and the child has a cranio condition I will absolutely go back to Dallas.

Did you ever visit Childrens here in Birmingham?

[Matthews Mommy]

I was never told of him having this problem for the future. I also will note Matthew has other issues that he needs to see a geneticist for and that may have slowed his bone growth down which is why he has this problem but they'll have to figure it out.

[c0urtnee]

I was never told of him having this problem for the future. I also will note Matthew has other issues that he needs to see a geneticist for and that may have slowed his bone growth down which is why he has this problem but they'll have to figure it out.
I wish you both luck! and Merry Christmas!:icon_mrgr
Now that the surgery has been done and over with, do you still see the NS or are you seeing someone else. I mean obviously you would see him for a followup, but if you felt that something else looked related, who would you see? I feel i need another dr to look at Jack after the surgery and tell me there are no other issues at the moment, and the NS made very clear he only does the surgery.

[Matthews Mommy]

I do see a NS and PS every 6 months to a year because Matthew's second surgery has not yet been performed we decided to wait to do the bone graph until the bone is more mature in the skull, another 2-3 years. He will always need to follow up with Neurological doctors because he has Autism, and a neuromuscular disorder he requires extensive therapy all week for speech, occupational therapy, physical therapy, behavioral therapy, and sensory therapy.

[Melissa]

Bryson had plates for his surgeries - no one ever said if they were disolveable, or not, but considering that the first one was 14 years ago and the last was 5 years ago, I don't know when/if the disolvable one's were available. You asked about what to do if they have such a huge soft spot - just be careful. Bryson's first operation was a craniectomy when he was 3 weeks old - they removed from just above the brow bone to the middle of his skull, and from at least temple to temple. His forehead regrew over the course of the next few months. We had to watch and be very careful, because the only covering for his brain was dura and skin. You won't have to worry about all that, though, because the gaps will be much smaller and the plates do a good job of holding everything together...

Good luck!

[Connor's Dad]

Did you ever visit Childrens here in Birmingham?

I saw this post and hesitated to respond, and then I clicked on your profile and read all your posts and decided to share info. When we informed our pediatrician we were looking for specialist b/c we wanted the best she told us not to go to B'ham, she had a child go there and was not happy with results. We were not given names or details, but considered that enough info. We then met another local family with a child with cranio, they had been to B'ham and were planning surgery (even though not comfortable w/ Dr), they ended up calling Dallas and were there same time we were w/ surgery 3 days before Connor.

I do not want to confuse, frustrate, or even scare you, just want to give you the facts. If I could give more info/details I would, but all I can offer is Ped. said no and others decided against B'ham. Every Dr we saw wanted to see CT, and Dr Fearon had a number of conversations with us before we ever even scheduled surgery. The Dr we chose is very knowledgeable and compassionate, made himself available (phone & email), and is the most experienced Dr we met. We have talked with the Dr since surgery and will have measurements and pics sent from pediatrician this week for followup and then see annually for ~5 years.

I know others mentioned in other threads, but I was curious if have have talked with any other Dr's? I will not recommend you use a different Dr and will not push our Dr on anyone, however I would recommend that everyone get at least a 2nd opinion.