Peace in Dallas

On Thursday I took Jesse to see Dr. Fearon in Dallas. He comes highly recommended and I felt that I've exhausted all local options as far as finding a craniofacial surgeon that I feel comfortable with. I also met with Dr. Genecov on Friday who also comes highly recommended. Both agreed that Jesse would need another surgery, but they did not agree on the type of surgery.

Dr. Fearon told me that Jesse was under-corrected. He had read Jesse's operative report and said that he did not feel that the technique used was a good one and in his opinion it should not be used at all. Dr. Fearon explained that Dr. C had training at a specific place and that was the technique that they taught, so he was not surprised that he did the surgery that way.

Dr. Fearon explained that he has followed all of his patients through to adulthood and what he found is that the skull tends to want to grow back to it's original shape. So he began to over correct during surgery to make sure that as the skull reverted, there would be enough of an over correction to keep it from going back to an abnormal shape. I've heard this before and he is not the only surgeon that does this, but it makes sense to me.

He explained that they have done scans and found that having the narrow forehead causes decreased blood flow to the frontal lobes. After surgery and widening of the forehead, the blood flow was found to be at normal levels. He feels that Jesse's forehead is still very narrow and is concerned that he would face this same issue of having decreased blood flow.

As far as increased pressure on the brain, he did say that the first surgery would have relieved any pressure if there was any. Dr. Fearon told me to try and look forward and not to look back. He said the good thing is that the pressure is gone and that we have time now to do a surgery later and there is no rush. He explained that the felt the later the surgery is done the better because the bone is harder and will be less likely to revert back. We have to wait until the bone is fully healed, which could take 9-12 months after the first surgery. He said that 18 months to 2 years is good, but waiting to age 3 or 4 would be better.

He is recommending another complete cranial vault remodeling (CVR) and fronto-orbital advancement (FOA). Jesse already had this done once, but he feels it needs to be done again as it is the only way to widen the forehead. I asked if he would be able to get the same result since Jesse has already had surgery and he assured me that he would be able to get a great result regardless of him already having surgery.

Dr. Fearon explained that he would take a piece from the back of Jesse's skull to use on the forehead to create a more normal looking profile and to widen the forehead. He would also reconstruct the brow.

I saw Dr. Genecov on Friday. He also agreed that Jesse needs another surgery, but is not recommending a full CVR/FOA. He said he could use bone paste to fill in the areas on the forehead and temple to create a more normal appearance. I just don't feel that this is sufficient because Jesse's forehead is still very narrow and I have to agree with Dr. Fearon about needing another CVR/FOA to widen the forehead to allow for more room for blood flow and brain growth.

Dr. Genecov said the main problem is that Dr. C didn't do a good job of setting expectations. He felt that if he would have told me in advance that there is a chance that Jesse might not respond to the type of correction he did (under-corrected to allow growth to fill in the rest) that perhaps I would have been ok with the result and felt better about waiting to see if there would need to be anything done later to widen the brow and forehead. I explained to him how I had researched a lot and I had found a lot of information on over correcting and that I was very surprised when Dr. C's fellow told me later that they had under-corrected Jesse. Dr. Genecov responded by saying that over correction is not always a good idea as they have to guess about how much to over correct.

As far as timing, Dr. Genecov also felt that waiting longer was better. He actually recommended waiting until Jesse was 8 since most of the skull growth is complete by then and any correction would not be affected by skull growth. He did say if he were to have a full CVR, that he would like to wait until he is 4, but again, would do it earlier if I wanted.

I don't agree with Dr. Genecov's recommendation, but he understood if I felt he needed another CVR/FOA and that he would do that if I wanted him to. He also said that he is in San Diego 3-4 times a year and would be happy to see Jesse when he is in San Diego to take over his follow up care since I do not want to take him back to Dr. C. I am so grateful that he offered this and I have to say it is quite a relief. Jesse doesn't have a surgeon right now, and this soon after surgery should be having follow-up every 6 months or so.

I like both surgeons a lot. Dr. Genecov was a bit more personable while Dr. Fearon was a bit more clinical talking about all the studies and explaining more in detail what would be done. Both said I could email any time with questions. Both said to wait, but that they would do it sooner if I wanted. Both are very good surgeons and come highly recommended. I've read about how meticulous Dr. Genecov is in surgery and I've read about what great results Dr. Fearon gets as well.

I feel at peace that Jesse needs another surgery. I'm not second guessing myself any more. Meeting with the surgeons has given me that. I also know that he really does need the full CVR/FOA. Right now, I feel that Dr. Fearon will be the one to do that surgery, but I know since we have so much time that I may change my mind a hundred times over, especially after getting the chance to correspond with both of them more over the next few months. So I know that it will be one of them.

My only real unanswered question now is when. There are two things that I've always been thankful for during all this cranio madness. One was that it is fixable and the other was that Jesse would not remember any of it. I just don't know how I can explain to a four year old why mommy let some strangers take him away and hurt him. And I don't know how I would explain it to him when he asks about it later because he still remembers it. But I want to do the right thing for Jesse. Both surgeons have about a 2-3% re-operation rate, so I feel that no matter when we did it, he would have a very low chance of needing a third operation. Right now the number that keeps going through my head is 2. Wait until he is 2 and everything will be fine. We could do it as early as May, when Jesse is only 15 months, but my gut says no even though I really just want this to be over and done with. It's too early, but 2 seems like a good time to me for some reason.

Again, we have time. We don't have to make a decision today, or tomorrow, but eventually we will be faced with that question. I just hope I know when the time is right for Jesse.