Just getting started

[Scotwr]

Hi...my 4-month-old is in the early stages of a diagnosis. X-ray reveals a closed suture, ct scheduled for this week. Can you tell me about how long the recovery process is for this type of surgery? How long before he will be up moving around again? I am scared that I may not have enough time off from work and I don't want to leave him with a sitter before he is ready.
We really don't know what to expect next. We aren't sure of the diagnosis yet, but we already have an appt with the neurosurgeon scheduled for July 3. Does that seem like a long time away??

Pam and Scott

[cheryl2]

Hello and welcome. Sorry you have to go thru this. They generally recover amazingly quickly. The recovery time depends on the type of surgery your child is going to need. The two procedures I know about are the CVR (cranio vault recontruction) and another procedure called endoscopic. My daughter had the CVR. She was in the hospital for 5 days, which I believe is about average for that type of surgery. She was pretty much up and around by time she came home. She was very clingy for a few weeks-always wanted to be held, wouldn't sleep unless I was with her. That's pretty common too.

The endoscopic procedure has an even quicker recovery time in general because that procedure is less invasive. Of course you'd have to discuss which procedure is best with your doctors. There's disadvantages and advantages to each and I think it depends a lot on which suture is closed.

A July 3rd appointment should be fine, though I know it does seem like a long time to wait. My daughter had her surgery at 10 1/2 months. I'm sure if your baby needs the surgery, they will get the ball rolling so that it happens as soon as possible.

Do you know if you will be meeting with a plastic surgeon as well as a neuro surgeon? Usually they operate as a team.

Good luck!

[Scotwr]

Yes, our appointment will be with the whole team. They are suppose to be able to tell us then what exactly they will be doing. I am scared to death. I just don't see how this happened. He looks perfectly normal. He doesn't have a weird shaped-head or anything, just one little flat spot. Other than that, he is just as normal as the next baby.

July seems like an eternity away! It is nearly impossible for me to concentrate on anything else. Did you work when your daughter had her surgery? I am also very worried about how long he will need special care after the surgery. I have a very limited amount of time off from work, and I am scared to leave him with anyone else before he is ready.

[Jennifer]

I'll agree with Cheryl. :giggle
July 3rd seems like forever away, but it's really not to far. (Though mentally, it's a long time to prepare for a diagnosis). Hopefully after the CT, they will call and at least give you their thoughts- yes it looks like cranio or no it doesn't really... You can always call occassionally to see if they have had any cancellations if you want to see if you can get in earlier.....Did you say somewhere that Luke is suspected to have coronal? If so, I believe the endo procedure is less commenly practiced on them due to the assemtry and stuff....

I would just use your time to research as much as you can, prepare questions (we have some under the surgery section), but most of all, just enjoy him. Try not to let the possible diagnosis rule your life (I'm just putting it out there...it is so hard not to think about it every moment though). Love him, enjoy him

[verdon2]

:adore Pam and Scott-

Yes it's seems like eternity to wait for such a critical result. Try to think positive, its tough but it is out of your hands now.:no You will be surprised how well the babies do after surgery... they are "Little Troopers!":cheer My Maggie was up and back to her old self w/in days. My husband and I were the ones in "pain"!:cry Good luck in your progress and try to keep us updated.... we are here for you!!!:hugg

[Jennifer]

He looks perfectly normal. He doesn't have a weird shaped-head or anything, just one little flat spot. Other than that, he is just as normal as the next baby.


Just me being curious now....Where is the flat spot?

[Scotwr]

the flat spot is in the front left side of his head, he kind of has a very small "bulge" on the opposite side, but no one seems to notice either one unless I point it out to them

[Jennifer]

So they are thinking a coronal suture is fused?


He is soo adorable!!! I love the avator! So cute!

[Scotwr]

The doctor didn't say which one, he just said that he had 2 plates fused together. He is just a pediatrician so he did not want to speculate. Just got the call from him a little while ago...CT scheduled for Friday evening.

[Jennifer]

Good luck on Friday....hopefully they'll give you some info next week! Also, while you are there, you can ask for a copy for yourself. I didn't know it the 1st time, but the 2nd time I asked and they gave me a disc with all Scans in their system under Emily's file. So I got her old one, the one during surgery etc.....interesting stuff.

[Katie]

First, good luck Friday :hugg And I agree with the others, July seems like an eternity away, but it is about a normal wait if there are no concers of pressure on the brain. The two hardest partes of Cranio in my opinion is the waiting, and handing the little one over to the surgeons. Dillon had the traditional CVR and FOA. He spent 5 days in the hospital and then came home with us. He was cranky the first few days home, but then his smiling personality came back through. Nights were kind of tough for about a month, he woke up quite often. My theory behind that is because they get woke through the night at the hospital so nurses can monitor stats. His staples were out pretty quickly, and the incision healed suprisingly fast. Once we got him home, he was on regular infants Tylenol, although they did send us home with coedine just in case.
Please keep us posted with your upcoming appointments :hugg

[snickers9246]

Scott and Pam. It sounds like the coronal suture, like my Doodles had!! Hers was the right, flattening above the right eye, bulging over the left. You'll get the results, and once the surgery is scheduled it will seem so far off, then too close!! We're here, we have pics if you'd like to see of the before and after surgery, and also her recovery. Holly didn't have her surgery until she was 8 months. In Canada here the Drs like to wait a little longer to do the surgeries. Good luck and we're here if you need us!!!

[Scotwr]

If anyone has pictures to share, I would be grateful! Also, did anyone have a child whose condition was not all that noticeable? Luke's doesn't look odd-shapped really. Most people don't even notice until I point it out. His eyes are even and he doesn't have a large bulge or anything. I think I might be grasping at straws, but it's just so hard to believe there is something wrong when I can't see it.

[snickers9246]

Holly's was considered a rather mild case of cranio. I'll post a few pics for you here. Most people told me they didn't notice it until I pointed it out. First is the before and after, mind you she is only a week after surgeryt here and is still showing some swelling. There's one with a top view of her head, you can see the flatening, and a couple of others. Hope this helps!!

http://i3.photobucket.com/albums/y89/snickers9246/BeforeandAfter.jpg
http://i3.photobucket.com/albums/y89/snickers9246/HollyJune05015.jpg
http://i3.photobucket.com/albums/y89/snickers9246/HollyApr05062.jpg
http://i3.photobucket.com/albums/y89/snickers9246/HollyMay05036.jpg

[snickers9246]

It will get a little more noticeable as he gets older as the brain "pushes out" causing the bossing over the unaffected side. When she was little it ws less noticeable than right before her surgery to me, she was even developing a ridge which you can see in the second picture.

[Jennifer]

I can email you photos if you like alsl (Emily had right coronal) Also, there is a before/after section in the family photos forum....that will show you quick looks at the babies!

[plukids]

Welcome Scott and Pam! My daughter, Sylvia, had left cornoal/metopic craniosynostosis repaired at 11 months old. She was very mild. I had a very hard time with it because friends and family just kept saying, "I don't see anything wrong". It was especially hard when the doctors would not even listen. I had spotted concerns at birth and she remained undiagnosed until her 9 month check up. The waiting is the hardest part. It is enough to drive you crazy if you let it. Post often and research and read. I found that to be very helpful! ((HUGS)) to you! Here's a before and after shot:
http://i16.photobucket.com/albums/b19/plukids/sylvieb4andafter.jpg

[Scotwr]

Thanks so much for all of the pictures. The children all look great! Its hard to believe they have each had such invasive surgery. Well, Luke's CT scan showed no closures, but they still want us to have the docs at DUKE take a look. Has anyone ever heard of there being a problem even if the CT looked good? Do I still have reason to worry? My husband thinks we shouldn't get too comfortable with an "all's well" attitude just yet until DUKE has seen the results and given their opinion.

[Matthews Mommy]

Good luck, we go friday too. It will be ok, Matt was in NICU for 2 days and he was bottle feeding the 2nd day his stay altogether 4 days. He was braver then my husband and myself we were a mess and he was blowing spit bubbles and smiling. The first day is rough and then it gets better.
Josette

[jessie2005]

I am wishing I had gotten an opinion from a cranio dr. last year when Maxine's CT was clear. I would have started this stuff 10 months earlier.

I hope that you get an all clear when you meet with Duke Dr.!! I am still waiting for conclusive info from my Dr. Good luck!

[mom2mykidos3]

My daughter was dianosed with left coronal craniosynostosis. If you want to look at her web site to see some pictures of her head you are welcome to. It is in our profile. Also, the babies eye seems to be pulled up on the fused side, although my daughter's is pretty bad already and some don't show signs of it at all. Just something to look for. She is 3 months old and is schelduled to have her surgery in October.