OVERVIEW:
We REALLY loved Dr. Hoffman! He has a lot of experience with removing nevi such as Charlie’s and the pictures he showed us of his past clients were REALLY great. He was very personable and spent a lot of time talking with us and answering my very long list of questions. He seems very confident that we can get a great result using tissue expanders to remove all of Charlie’s nevus. He said it would take 2, maybe 3 rounds of tissue expanders to remove it all. A “round” would consist of:
• One surgery to put in 2 tissue expanders (one on the “normal” part of his scalp and one on his forehead)
• About 3-4 weeks for recovery from that surgery
• 12 weeks of weekly fills to fill the expanders and stretch the skin
• A second surgery to remove the expander, remove sections of the nevus and stretch and reconstruct the forehead/scalp with the new stretched skin.
• Healing phase of about 3-4 months before they can start the next “round”.
Once Charlie finished the 2 or 3 rounds, there might be some follow-up surgeries down the road to touch up scars, straighten eyebrows or inject fat in some areas of the face. But overall, Dr. Hoffman has had some amazing results without any touchups so we are hopeful we won’t need much touchup after the nevus is removed. Dr. Hoffman doesn’t like to start a round until the child is about 1 year due to the soft skull bones (more on this below). So at this point we are about 99% sure that we will have Dr. Hoffman remove all of Charlie’s nevus and we hope to begin in January 2014.
So that is the short story. Here is some more detailed information we got from Dr. Hofffman:
TIMING:
Dr. Hoffman was explaining that the skull bones of babies are very thin and pliable. He said at Charlie’s age now (2 months) he could cut his skull bones with a pair of scissors! If you place a tissue expander in when the skull bones are soft there are two problems:
• 1) The tissue expanders need something hard to press against or they won’t push the skin out and expand it.
• 2) You can permanently dent the skull. Dr. Hoffman’s colleague did a study with baby pigs and showed significant dents (some even down to the brain) when tissue expanders were placed when the bones were still too soft.
Dr. Hoffman also likes the fontanel (soft spot) to be closed before starting surgeries. So given all these reasons we agree that it would be best to start after Charlie turns 1. This timing will be perfect because hopefully we can start in early January 2014 and get 2 rounds in before the end of the year (for insurance purposes).
FILLS:
Although there are a lot of doctors who allow the parents to do fills themselves, Dr. Hoffman does not like his patients to do so. He likes to do the fills himself to ensure they are done properly and to monitor the progress. Once the tissue expander is placed under the skin, there is a port (also under the skin) that you inject a needle into and slowly fill the expander with saline and thus stretch the skin. This is done weekly until the expander reaches the point that the doctor is happy with (this usually takes about 12 weeks). So since Dr. Hoffman wants to do all the fills himself, we will be making weekly trips to San Francisco (about an hour away). Although this isn’t ideal for us, you do what you need to do. So if that means weekly trips to SF, then to SF we will go! Dr. Hoffman also said his risk of infection in the expanders is very low and this *might* be due to the fact that he does all fills. If an expander does gets infected, the child often ends up in the hospital on IV antibiotics or worst case scenario the expander has to be removed and you have to start all over again.
EXPANDERS:
Dr. Hoffman thinks that for the first round he would start with two expanders: one in the non-nevus area of Charlie’s hair and then a second one on the non-nevus side of his forehead. He is hopeful he can remove quite a bit of his nevus in just that round and most likely there will be one section of nevus left near his temple on the right side. For the second round he would most likely put one on his cheek below the nevus and another in the scalp again. We are hopeful that just these two rounds will be enough to remove it all.
SCARS:
One of the things I loved most about Dr. Hoffman were his scar lines. He creates very natural lines along the forehead (the most noticeable scar) by curving above the eyebrow, then going down a bit where your nose is and then curving back up over the other eye brow. I like this much more than a straight cut across the brow line. He is also hopeful that he won’t have to go all the way across on Charlie’s brow and instead only go part of the way across. He will then also have a scar along his hairline, one over near his right temple and then a couple on his scalp (which will be more hidden by hair). Dr. Hoffman also kept the hairlines of his patients in a very natural place. Overall he seems like a perfectionist and even the minutest things he pays attention to. He is conscious of trying to still create a sideburn and things like that for Charlie. I just really love his attention to detail (especially considering we are talking about rearranging Charlie’s face!).
HAIR:
I asked about whether the tissue expanders will thin Charlie’s hair and he said they will. The hair does not regenerate so the more your stretch it, the more it thins. He said with one expansion it is not very noticeable. If you do it twice it is noticeable and if you do it three times it is very noticeable. Luckily Charlie comes from two parents with VERY thick hair so we hope it won’t be too noticeable on him. Another thing we did talk about was balding. My father went bald at a young age and since it is thought that baldness is inherited from the mother’s side there is a good chance that Charlie might go bald at some point. Dr. Hoffman was explaining that since we will be moving his scalp all around, if he does go bald, it won’t follow the typical male pattern baldness. He will just start losing hair all over! He will be sight then!
INSURANCE:
Of course the financial part of all these surgeries is a big consideration so we talked a bit about that. One of the most important parts I wanted to know was whether touchup surgeries to correct seemingly “cosmetic” things would be covered by insurance. Dr. Hoffman said there was a law passed in the late 80’s that says ALL procedures related to a congenital malformation (which is what Charlie’s nevus is) will always be covered. So even if we need to come back when Charlie is 10 years old to get a scar revision…it will be covered. This was great news and a big relief for me.
TIMING:
Dr. Hoffman said the first surgery to put in the expander would take about an hour. The second surgery to remove the expander and then stretch and reconstruct everything takes about 4 hours. He said with the first surgery the kids often go home the same day. For the removal surgery, they sometimes go home the same day or stay just one night in the hospital.
So I think that is about everything we learned yesterday. We felt so comfortable with Dr. Hoffman and were so happy with his results that Kelly and I are about 99% sure we want to have him remove Charlie’s nevus. We will meet with Dr. Frieden (the pediatric dermatologist) again and have a long list of new questions to ask her regarding the medical part of Charlie’s nevus. But I don’t think there is much she could say at this point to sway me. I felt from the beginning that I really wanted to remove his nevus and I am so relieved that we have found a plastic surgeon that we have so much confidence in. It makes this decision so much easier! I used to feel like it was a lose/lose situation but now I feel like the removal is really a great option for us. Although I am not excited about Charlie having all these surgeries, I still feel like it is best for us and our family.
And here are some pictures from the last few weeks
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Bathtime!
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On a trip to Monterey
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Valentine's Day!
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Happy smiles
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"I'm 2 months old!"
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