3rd Opinion

[vancesmommy]

Friday we are going for our 3rd opinion to see if Vance needs another complete surgery or just a touch up. This is actually the 4th doctor we will have seen. Our NS and CS from OH both think a full reconstruction is not needed, but our CS thinks a touch up is. Our NS here in GA thinks we need a complete redo. So we are heading to Augusta to see another CS to see what he thinks. I think our decision has already been made, it is just a matter of if we can get it done in GA or if I have to make arrangements to get it done in OH. I have all the faith in the world in my Dr.s in OH, so I think we are going to go with a touch up surgery. My CS in OH doesn't think the new CS will feel a redo is necessary either. So keep you fingers crossed and think of us on Friday. I will let you know what happens!

[Dean'smom]

Good luck Friday. I will be praying for you! I have a question about touch up surgeries. What exactly do these entail? How are they different from the full CVR surgery? My son had the endo surgery, and I of course wonder if someday he will need this......

[Jennifer]

Good luck on Friday! Hopefully you get the answers you want! What are they thinking would Vance's 'touch-up' consist of?

Dean's Mom- I'm guessing all touch-up's are different. Emily still appeared to have a wider eye over time and the area above the eyebrow was flat again- so for ours, the NS/PS built-up around the eyebrow bone. The 'positive' for me of 'just a touch-up' was that they did not need to remove any bone, cut any bone, or reshape any of the existing bone.

[mom2mykidos3]

Good luck. I hope all he needs is a touch up. I know for me a touch up seems so much better than a whole redo. You will be in our prayers.

[snickers9246]

Good luck tomorrow Denise!! We'll be thinking of you and hope that the vote is also just for a touch up!! Give little Vance a kiss from Doodles for luck!!

[Kari]

We'll be thinking of you as well! Fingers crossed!!


Kari
Mom to Brin, 7/28/03
and Lily 12/6/06 (bicoronal synostosis)

[snickers9246]

So?? how did the visit go??? Hope you got the answers you were looking for!!

[vancesmommy]

Well it didn't go as I hoped it would! I hoped that either I would go in there and not feel comfortable with this guy or that he would tell me what I wanted to hear. No such luck! You could tell he has been doing this for quite some time, and really knew what he was talking about. He was also a very caring guy. I asked about doing a touch up with bone paste, and he said that he felt that would be a very bad idea. He said over time that it starts to chip off and causes problems. He said we could be certain that he would need another surgery if we went that route. He said it was a "cut corner" approach and we could expect cut corner results. He is reviewing our last CT scan and said to email him if we didn't hear from him in a month. Then we meet back up with him in May. As long as there is no pressure we would be doing it for "cosmetic" reasons. It would be a complete CVR/FOA. He said it is a hard decision to make, but he said if it were his kid he would do it. Some people in my family don't think "cosmetic" is good enough reason to put him through it, but I just don't know. I think he is gorgeous and looks fine, but obviously not everyone sees what I see. (Thanks to the "wonderful" ER Dr. for pointing that out!) I just don't want him to resent me when he is a teenager for not doing everything we could to give him a "normal" life. I just want someone to tell me what to do!! I hate having to make this decision!!! I can only imagine that it is going to be an even harder road the 2nd time around. He is so much older, but still not old enough to understand. How do you explain this to a 2 year old and how do you keep them from banging their heads around? He falls like 10 times a day just walking! I think I am going to have a melt down! All of this stress, plus the stress of worrying about the results of my ultrasound on Tuesday! I need a vacation from my life! ha ha

[plukids]

Sending hugs your way Denise! It is so hard to advocate for our children. Are you waiting then to hear back from the surgeon and to make a decision by your May appointment? I totally agree with you on the cosmetic vs. medically indicated surgery struggle. It is difficult to decide but you, as Vance's mother, know what is best at this time in his life. Even cosmetic surgeries are a necessity sometimes. I want what is best for Sylvia and if that means that I could help her self esteem with a cosmetic surgery to correct her little head then I would probably do it. (I know it is easy for me to say when I am not currently in your shoes.) Did the surgeon think that this is something that will worsen over time as Vance grows? Sometimes other people (family, friends & strangers) are so critical on us with decisions we make for our children. I hate to say it but really it is not their place to say anything. When Sylvie had her CVR/FOA some of my family kept saying they could not see anything wrong and did not understand the need for surgery. Like I would just create this surgical intervention???? DUMB! I'm here if you need to talk or if you need someone to lean on!!

[vancesmommy]

Thanks Lisa!! I don't know what I would do without all of you that really understand! The surgeon said it is hard to tell what will happen over time. It could get worse or it could stay the same. There is even a slight chance that it could get better over time. It just depends on his growth pattern. We are waiting until we hear back from the CS and then we will make our final decision when we go back in May. It is going to be a long three months! Not to mention that if we do the surgery in the time frame he was talking about the baby will only be a few weeks old. We will also have to travel 3 hrs to get to the hospital and all of my family is in Ohio! AAAHHHH! I need a drink !