CT Scan results

[Wyatt's Mom]

Wyatt's ct scan went well. He was a bit cranky due to having to fast and he was also sick. Thank goodness his fever was gone so they could do the ct.

We got the results today. He definately has metopic synostosis. He also has a partially closed saggital suture and a partially closed lamboid (sp?) suture. :sad They don't think that those two require surgery at this time. They will do the surgery for the metopic and then just check him every month to keep an eye on the other ones. Hopefully he will not need 2 surgeries. I have pictures I will post when I get them scanned.

It feels like I have finally been proven right. The ct scan clearly shows that his metopic suture is FULLY CLOSED. I feel like marching these pictures to the pediatrician that kept telling us he was fine and saying "I told you so!!".

Thank you all for your support. You guys rock!:cheer

[Katie]

You should march over to the pedis office! Maybe next time they will look a little further in to the next parents concern. I'm sorry you have to go through this, but I'm glad you went with your instinct and the ball is now rolling :hugg

[mrs j]

Well done Sarah for pushing this, i would take the pics to the pedis office, as Katie said, they will know a bit more incase they see another case and dismiss it. I would love to get Bradleys pics, but they don't give them to us over here.xx

[xl1200c]

I am so glad you pushed it. Unfortunately so many of us have to. You are doing a great job of this all - we are here for you all the way.

[Janet]

Sarah....I'm glad you got the results, I felt the same about my OB, I wanted to take all the surgery photo's the CT scan and show him. He told me that Fiona's head would go back to normal in a few weeks (she had a ridge from her head to the bridge of her nose that you could see. I really don't think too many doctor's know about cranio issues. I had her EX- pediatrician tell me that her metopic was fused but just observe it over the next year!!!! JERK!!!!

[Wyatt's Mom]

Thanks guys. It just amazes me how many of us have to push the issue in order to get taken seriously.
Now I am just worried if I should get yet another opinion to see if another neurosurgeon would do surgery on all sutures or just the metopic. I really would hate for him to have to undergo another surgery in a year. UGH.

[Janet]

http://www.sickkids.ca/craniofacial (http://www.sickkids.ca/craniofacial)

Sarah....look at this site, maybe you can send the CT images to them to get a second opinion.

[sarahob]

Glad you got the results. Our family doctor missed it too but I just don't think he ever had any experience with cranio. I too am a bit confused why they are not addressing the other sutures - is there a chance of future surgeries or is it just too mild to be of any concern? I think I would probably go for a second opinion - maybe e-mail the CT Scan results to Sick Kids. Good luck and keep us posted.

[three.little.boys]

Sarah-
Sorry for the diagnosis...but don't you feel validated that you *knew* in your mommy heart that something was wrong? You go, girl! HA!

So, I know it is shocking and depressing all the same when you get the official diagnosis even though you knew what the results were going to be. I remember feeling like I was going to puke when the CFS started talking about cutting Q's head open. I had prepared to get this info...but it still felt like a dream when they verified that my little baby would have to be cut open!!

Hang in there....Wyatt is lucky to have a great mom fending for him!

Sadie

(PS- thanks for catching my 2008 date error inthe "Quintin's Story" post...I already fixed it!

[KALEMSMOM]

Our Dr was the same, I kept insisting and asked for a referral and she wouldn't give one. I finally found the neurosurgeon at SickKids and sent him an e-mail with pictures, immediately he booked us for a CT scan and a consult. It is amazing how many doctors have no clue what cranio is or people in general. I'm sorry you got the diagnosis but you will find great support here.

[Tawnia]

Have you talke to Dr. Singhal about the other sutures? You have to ask him really direct questions and he will give you really direct answers. He is great for not beating around the bush. I think there is a reason they don't do it in one surgery since they are already completely reconstructing the front half of the skull with metopic.

[Springy]

Girl when you go to the pedis you tell him to NEVER UNDERESTIMATE A MOMMY'S INTUTION!!

[EmmaLacey]

Sarah,

I think at this point, what have you got to lose in getting a second opinion about the multiple suture issue. It would be awful to have go through it again in the future. Even though they are only partially closed - if they're already in there why not fix it all at once? Seems to me that it makes sense. In case you hadn't read this on another post, Emma never had a CT scan prior to surgery. When the doctor got in there he realized that not only was her sagittal closed but her metopic also. Not sure if it was closed all the way down or just partially, the doctor didn't really get into it and it never occurred to me to ask at the time. I am just glad that all is done. I can't imagine going through the sugery and then wondering after the fact if I'd be going through it again. I think you would be constantly worried about it.

Great job in trusting your instincts and like they said above - if not for your personal "I told you so" satisfaction maybe the pictures would help educate the doctors on what to look for in the future. I took my before and after collage that Cathy made for me into Emma's ped. practice the other day so they could keep it on file and hopefully learn a thing or two !:)

[Wyatt's Mom]

Tawnia: Yes, we asked him and he said he doesn't "think" that the other sutures will need surgery but they want to watch him over the next few months.

Thanks everyone for your replies. I'm hoping to get another opinion.

[Nicholas' Mom]

Sarah, glad to hear the CT scan went okay and that Wyatt is feeling better. I know how you feel about wanting to go back to the pediatrician and tell him "I told you so" - we had the same experience and I'm still annoyed with so many pediatricians ignoring my concerns about Nicholas' head shape. The good news is that now that it's been diagnosed, you can move forward and start planning for the surgery, etc. It's an emotional roller coaster, but you'll get through it. The feeling of relief after the surgery is just amazing. We were also initially told that Nicholas had more than one suture closed (that the metopic was fully closed and another suture was partially closed). Our NS said that the other partial closure is linked to the metopic suture being closed, so although, yes, techncially there was more than one suture closed, Nicholas' cranio was considered a single suture case (metopic). One thing we didn't do is get a second opinion. Everything has turned out well for us so far, but if I had it all to do over again, I would get a second opinion- that is one thing I regret not doing. We had (have) a lot of confidence in our NS, but I think a second opinion would have been nice (even if just to settle my nerves and lessen my doubts as to whether we were doing the right thing). Best of luck to you these next few months. Please let me know if there is ANYTHING I can do for you.