Diagnosed with Coronal- Endoscopic?

[Dean'smom]

After meeting with the NS today, we have been told that my son has Coronal CS, which is what I figured from the reading I have done. The NS gave us 2 options, the endoscopic procedure, or the larger surgery, CVR. With the endoscopic, they remove a strip of bone, and after surgery, he will have to wear a molding helmet for 3-4 months. The Dr. said we have this option because it has been caught early, and only one suture is involved. Has anyone gone through the endoscopic procedure? Now that we have the surgery scheduled for this Tuesday, I am more scared than before. I thought I would feel better having met with the Dr, but I really am dreading Tuesday. Talking about the possibility of a blood transfusion, and other risks really has me terrified. My husband and I are hoping that we made the right choice be choosing the endoscopic- my husband asked the Dr which he would choose if it were his son, and the Dr. said he'd go the endoscopic route. Can anyone share experiences with endoscopic surgery? I hope we made the right decision.

[Jennifer]

That's an amazingly quick turn-around date- from meeting with the NS to getting a surgery date in less than a week- WOW!!!! Were you comfortable w/ the surgeon? Did he answer all your questions?

[Jennifer]

As for the endo procedure- I can't help much- It was not an option either NS we met w/ gave. I've heard great things about the procedure, but have also heard that it's not performed on coronals as often due to the assemtry in the face. Does one of Dean's eyes appear 'larger' or 'wider' than the other? I didn't think that endo could correct that? Did you ask the NS what the chances were of having to go back at a later date and perform a 2nd- full surgery? I've heard this as a reason for not doing the endo also (though we had the full surgery and had to go back in for 'touch-ups' anyway....) I think if I were in the situation now, and endo was offered, I would do it if the NS has been performing it on coronal babies for quite a while and does a decent number of them per month. AND if the number of secondary surgeries for endo was not any higher than that of the full procedure.......

I'm not sure that helped at all. Many :hugg's to you. I will say some prayers for Dean and your family this week. I am sure he will do great! (Do you mind if I add his surgery date to the calendar?)

[MikenAustinsMommy]

I second what Jennifer said... If my NS had done a lot of endo procedures on Coronal babies, I would have been all for it.

There is a lady named Klasnick on the Cappskids message boards that had the endo procedure done on her coronal baby. I know she was happy with the results immediately after, but have not heard from her in a while. You may want to get in touch with her.

[Dean'smom]

ok- thanks, I will try to get in touch with her. We were comfortable with the surgeon, he seemed very knowledgeable, and he did take a lot of time to answer all of our questions. He said he is comfortable with doing the endo. surgery, but I guess, what else would he say.....to answer your question Jennifer, his one eye is a little wider, but the Dr. did say that the molding helmet will cause everything to fall into the correct place, therefore making the eye appear the same as the other. He did say that this procedure plus the helmet should achieve the same result, and that a second surgery shouldn't be necessary. I hope he's right...thanks for your help! Oh...and you can put his surgery on the calendar...thanks for asking. I am starting to feel angry that my son has to go through this!!!:mad:

[infinity]

how old is your son? because i would get a second opinion if you have the opportunity to do so. what is the age limit for endoscopic procedure? if you have time, take the time to be comfortable with your decision. i dont have much time with my son bc he was just diagnosed with it at 6 months old, and after he reaches 7 months he has to go in for the pi surgery, which involves more incisions of the skull. i just went to my first evaluation on monday, but i still managed to get an appt with another dr to get a second opinion this coming monday (dont ask how i got it so fast!) . i will be scheduling a surgery date with the first dr tomorrow even though i am getting a second opinion, bc it will put my mind at ease to know 2 drs have the same approach and conclusion regarding my son's condition. just remember, if you have doubts, clear them up before hand, you dont want to have any regrets. hope this helps.

[snickers9246]

Dean's Mom... you are having normal feelings. We've all been angry at one point, why our little one? Why anyone's baby should have to go through such a terrifying surgery is beyond me!! Can't help with the Endo, we had the full CVR as well. I do hear the Endo has a lot quicker recovery and less swelling etc. We wish you luck and are here parying for your little one!!! He'll do fine Mommy and he'll surprise you at his strength!! :adore