Monday, June 28, 2010

3rd Opinion and a Phone Call -- "The Plan"

This morning I spoke with Dr. Bennett. I told her everything that was going on. My biggest thing was that I didn't want to step on her toes or go above her with what I was doing. I didn't want to have a different plan than she had. She said that's not the case, that a lot of the time it's the parents that do all the research, and that she's fine with what I'm doing. Whew!
Tonight I got a call from Dr. Bauer. He gave me the "plan of attack", so to say. This is what he had to say... The biggest thing was that he said he can remove it. He will do the tissue expanders to replace the forehead with normal forehead and the scalp with normal scalp. The first surgery will be to put in the tissue expanders. He will do 2 to start off with. One will go in her left forehead and go towards her scalp. The other one will go behind the nevus,  above her right ear, and towards the back of her head. He said that the forehead is the tricky part. He said that there will be a scar at the brow level and at the hairline. He'll put her on antibiotics for a few days after inserting the tissue expanders, to prevent any infections. Then while she has the expanders in I just need to watch for signs/symptoms of infection, and if I see any then he'll put her on antibiotics again.
The second surgery will be 11-12 weeks later and that will be removing part of the nevus. We'll wait 4 months and then do it all over again, but this time only have 1 expander. Then 11-12 weeks later the 4th surgery will remove the rest of the nevus. The 5th surgery will be a touch-up procedure that is reconstructing/refinement of the brows (since he thinks that one may be higher or lower than the other) and making everything (hairline, brows, forehead) symmetrical. Believe it or not he said that this last surgery is out-patient.
He said that after the first set of expanders are put in we'll have to stay in Chicago for 8-10 days and then go back in his office so his nurse, Susan, can teach us how to do the expanding. (This is where Dustin get's a little ticked off at me...He doesn't understand why I don't just tell them that I'm a nurse! Well I'm not a nurse when it comes to my kids. I don't want them assuming I know something. I don't want them to talk to me like I'm a nurse...I want them to talk to me like I'm a mom.) They'll give us all the supplies to do all the expanding at home after that.
Another thing he mentioned was how bad she'll look when coming out of the expander surgeries. He said that she'll be bruised all over, especially down into her right eye. There will be 1-2 drains from each expander. He said that those will be in for a few days to a week and usually the parents take them out.
I asked when we can start this process. He said that typically when he sees a newborn then they start at 6 months, but because he's "seeing" Brooklyn at 4 months, then we can start at about 8 months, or whenever we're ready. Dustin wants me to ask him at the conference if we need to start now, or if we can wait a year or so to save up enough money for at least 5 trips to Chicago. I'm betting that he'll suggest starting sooner rather than later because it grows as her head grows. At birth it was 9cm x 10cm and when we saw Dr. Grosso at 2 months it was 10cm x 11cm. So it may be even more surgeries if we wait just a year. I'll ask him though and see what he says.
I asked him what about waiting until her fontannelles and sutures close in her head and he said theoretically that's a great idea...IF they closed at a year...but they don't! He said that the head does do a little molding when the tissue expanders are in, but once they're taken out the head goes right back to where it belongs. He said he's done over 100 on the forehead/scalp area and it's all turned out great.
After getting off the phone with him and talking to my mom and Dustin I have a few more questions that I'll ask at the conference, such as what about getting an MRI to check for NCM? (NCM is Neurocutaneous Melanocytosis - which is melanocytes in the central nervous system that can cause developmental delays or seizures. It affects about 33% of people with a large or giant nevus.) Also, do I need to worry about satellites appearing? What will her hair growth be like after the surgeries?
I'm anticipating from start to finish to be about 15-18 months.

Sunday, June 27, 2010

Happy 2nd Birthday Cali!

I heard back from Dr. Bauer today and he said that he'll get in contact with me tomorrow either by e-mail or phone. is Cali's 2nd Birthday!!!! Wow has time flown by! We had a big party for her...and she had a ball. She was playing like crazy. We got her a Disney Princesses Castle pool so she was a little doll in her Princesses bathing suit...that she had on all day! Every present, except for 1, was Disney Princesses. I sure did love it! ;o)  She'd only had a 10 minute nap earlier in the day so she crashed that night!

Saturday, June 26, 2010

2 Good Things!

Two good things happened today! One, my parents are lending me the money so that I can go to the conference! What a blessing. I'm going to learn so much from the conference. I'm SO looking forward to it. :o)
Second - I heard back from Dr. Bauer. He said that I probably didn't need to bring Brooklyn but he wanted a few more pictures. So within a couple hours I sent him the extra pictures that he'd asked for. He wanted me to wet her hair (among a few other things) so that he could see exactly how big the nevus was.

Thursday, June 24, 2010

Another Opinion!

Today I spoke with Dr. Comes about what's going on and my new developments. She agrees that I do need to go to this conference, but like Sharon said...I have to take Brooklyn with me. She made a great suggestion though. She said to contact Dr. Bauer's office in Chicago and ask them if I did need to bring her or if I could just bring pictures. So I did just that!
I found his contact info and called them. I spoke with his scheduler, Wendy, and she gave me his e-mail address. She said to send a few pictures to him and ask him my questions. I'd already taken pictures because I was going to take them to the conference, so I uploaded them into an e-mail and sent it to him. I asked him if I needed to bring Brooke and if I should see a dermatologist to get more info about her nevus.

Friday, June 18, 2010

1 Opinion and the best surgeon!!!

I went to work on Friday and spoke with Sharon first. I told her everything that happened 3 days ago at the appt and she told me to far away! She made a great point in saying that after he does all his research and throws options out that he'll probably get back with us and tell us that he's not comfortable doing it. She thinks I need to go online and find someone that specializes in it. But how on earth do I do that?!
Later that day I researched some more. I found a website: that tells all about them and you can register someone who has a large or giant nevi. I registered Brooklyn later that afternoon and literally within 15 minutes I got a call from them welcoming me to the site! Amazing, if you ask me! She took the time to welcome me and invite me to their conference they are having in July. It's Wed (7/7) thru Fri (7/9) in Dallas, TX. Originally I thought, nah, I don't need to go to that. But once she started talking to me about it, and once I read online all about it I thought that I needed to go. I looked up ticket prices to Dallas, plus the conference fee, plus the hotel, plus food $, etc and it'd be over $1000 to go. :o(  I knew I couldn't take Brooklyn by'd be way too difficult for me to do it by myself. They do have day care at the conference, but exhausted me thinking about it. It was too expensive to have anyone else go with me too, so I kind of just told myself that I wouldn't be able to go. I did tell my mom about it and she wanted to talk to my dad and tell him about it.
Anyways, I was reading about the speakers at the conference and there was one doctor who caught my eye. His name is Dr. Bruce Bauer and he practices right outside of Highland Park, IL. He has the most experience with congenital nevi's in the world and has a particular interest in tissue expansion. PERFECT I thought to my goal in life is to be able to talk to this guy. Another reason I'd want to go to the conference is because they have free consultations with the doctor's. I thought that if I just took some pictures of Brooklyn he'd be able to tell me if he'd be interested in removing hers or not.
I told Sharon about the conference and she said that everything sounded great, but that I really needed to take Brooklyn. Yikes.

Thursday, June 17, 2010

Meeting with first Plastic Surgeon

Today (6/15/10) at 2pm we met with Dr. Grosso at Billings Plastic Surgery. His nurse came in first to take pictures, then he came in. The first thing that was a little "off" was that he had to ask us how big her nevus was exactly. He kept saying how big it was, but he didn't know how far back it went...I had to show him. During the appointment he basically was thinking out loud to himself. He went over all the different options that we could do (chemical peel, microdermabrasion, removal, tissue expanders, leaving it alone, etc). He was saying how we'd do each option, and then would tell us that that option wouldn't work for this reason or that reason. He was very confident in how he could do things, but it was obvious he'd never removed one from the scalp/forehead before. He never once came out and said "well 3 years ago when I removed one on the head this is what I did and this is how it turned out".
I asked him how the nevus started and he couldn't answer me. He said that he'd have to get out all his medical books to find out that answer! I said that I knew they started at 8-10weeks gestation and he said that he didn't even know that. That's fine, but I'm not sure I'd have told us that! He said "You know you just don't see these here. In a big city like Boston you may see a lot of 1-2 a year, but in rural Monana you may only see one every 5-6 years, and that's not including seeing them on the head, which is rarer."
Then on his way out he said that I needed to continue doing my own research to see what else I could find. He said that we couldn't start until Brooklyn was at least a year old because he wanted all her fontanelles and her sutures in her head to close. He said he wanted to see her back after she is a year old and we'll do a CT to make sure they've closed, and then we'll start the removal process.
So we went home and I did nothing but research. For 2 days I did nothing but eat, sleep, drink, and think nevi! On Thursday (6/17/10) I finally decided that I'm going to talk to 3 people and explain all this to them and see what they think. I'll talk to our family doctor (Dr. Bennett), to the doctor I work for (Dr. Comes) and the Nurse Practitioner in our office (Sharon) and see what they say. If they say that he sounds like he knows what he's talking about and that he could probably do a good job then I'd leave it alone. I'd forget about it until after she's a year and we'll do what Dr. Grosso suggested. BUT...if all 3 people said to run and find someone else because it didn't sound all that promising, then I'd do more research and try to find the best surgeon to remove nevi's in the country.