Melissa's Hemangioma Page

In July 1996, Melissa underwent direct steroid injection into her lower lip to help with involution. That treatment made it shrink dramatically, but we all knew she would need something more. The doctors had told us from the beginning that she may need reconstructive surgery on her lip because it may never be "normal" after involution. We understood that and are doing the best we can for our little girl.

As far as how we decided it needed to be done... we didn't really decide, the decision was made for us by the hemangiomas themselves. We want our daughter to have a relatively normal looking lip so that it doesn't define who she is... so she can be like the rest of the kids she will be going to school with in a few years and not feel self-conscious about her face.

April 17, 1998 -- the day after her first reconstructive surgery.
For those who have been following our story, yesterday's reconstructive surgery on Melissa's lip went well. She is a little swollen and has stitches so we cannot tell how much different it is. The surgeon, Dr. Barry Zide, is pleased with the work, and that has to be a good sign. He said in about six months she is going to look great! Why six months you may ask...well, the doctor reconstructed the lip and removed some but not all of the hemangioma. Therefore, it will continue to involute on its own; this process will go quicker because the surgery will speed it up.
The surgery itself took a little over an hour and she was heavily sedated rather than put under general anesthesia for which we were happy. After the surgery, we were by her side when she awoke. One of the first things she said was "get me out of here!". At that time, we felt like the worst parents in the world because there was nothing we could do for her until the doctor told us we could take her home --- which was all she wanted. She slept most of the rest of the day and night. Today, it is hard for her to drink or eat because of the pain and the stitches but she is a trooper and is being as good as she can. She is still a little sleepy today although that is not such a bad thing since she is usually a very active little girl. I am sure things will be much better after Tuesday when her stitches are removed.
We will be going back to Dr. Zide on September 10, 1998 for the next pre-op/consultation appointment. He will then decide when is the best time to do the second surgery to finish de-bulking and to define a lip line.

October 16, 1998 - the day after the second surgery. Melissa's surgery went well. It only took about an hour.
This time around there was less cutting; the only cut was along the lip line (which is the reason for the surgery in the first place). The dr debulked it a little more and created a lip line for her.
Dr. Zide was very happy with the work, but of course we couldn't tell anything with the stitches and swelling. (The stitches get removed next Wednesday.)
So far, her recovery is quicker this time around as well; probably because there wasn't as much work done as last time. She is eating well (unlike last time) and even asked for food as soon as we got into the car to go home... she wanted McDonald's, of course she got it. :o)
Hopefully she continues to heal well and this will soon be a distant memory for her.

October 22, 1998 Oh, no!
We went to a B-day party for a couple of friends and everything was going well. Then Melissa and another child walked (not ran, walked) into each other - it was enough to split her lip along the incision line! There was blood everywhere and I got scared that the work that was done the previous week would be ruined. I ran her back to the surgeon who cleaned it up and restitched her. He told me that it wasn't too bad and that she should heal back up with no problem... what a relief!
Melissa was such a trooper throughout all of this. I have to brag here that I have such a brave daughter... she was calm and held the ice pack on her lip the whole trip into the doctor's. She did get scared when he pulled out the syringe to numb her, but after that, she did great. (Much better than I would have done if I were her, I'll tell you that!) We go again to get these stitches removed on Tuesday. And I was thinking we didn't have to go back until January! Oh, my!
Now, my job will be trying to convince the insurance company that we had to go to the surgeon's and not the local emergency room. It never ends with them! I did go to Melissa's pediatrician and got him on our side with this - he said we did the right thing by going directly to the surgeons and not the local emergency room... hopefully, the insurance company sees it the same way.

October 29, 1998 The stitches were removed two days ago and things are looking very good. Dr. Zide was happy with how it looks so far. We don't have to return until January so that he can see how Melissa is progressing.

Update 1/6/99 Woo-Hoo!!! The surgeon (Dr. Zide) was very happy with Melissa's progress so far. The next step, as we thought, will be to have a little laser surgery done below the lip line (that the surgeon created) to get a better contrast between Melissa's lip and chin (right now the red from her lip - and what's left of the strawberry hemangioma- goes from her lip to half way to her chin so there is no definition of the lip besides the dr. created lip line). Anyway, I'm off to the trenches to prepare a fight with our insurance company once again.

The insurance company finally approved a consultation visit with the laser surgeon, Dr. Robin Ashinoff, and we will see her on March 19, 1999. Of course, I will be updating again after that date.

We had our consultation visit with Dr. Ashinoff. Melissa will have her first laser treatment at the end of April. We go in an hour early for application of the EMLA cream and the actual procedure should take about three minutes. She'll most likely need two treatments to get the lightening we are looking for. The second treatment will be done about 6-8 weeks after the first.

April 23, 1999 laser surgery (treatment).
We woke up 5:00 am to get ready to go to the city for our appointment. On the way, we drop Kristen off at my in-laws so we can focus on Melissa. We get to the specialists office at 8:45 a.m. for the application of the EMLA cream. By 10:00, the cream has taken effect and it's time for the procedure.
Even with the cream, Melissa felt the laser treatments. I am not sure if this is because we're talking about such a sensitive area (lip) or what, but she did cry out during the laser. She was "hit" a little over a dozen times and it took approximately a minute to complete, so it wasn't too bad. She now has the typical bruising that follows laser surgery; we're told it will last a week or two. Melissa was pain free right after the procedure and looking for food a little bit later. :o)
Her laser specialist, Dr. Robin Ashinoff said she believed Melissa will need two treatments to get the lightening effect we are looking for. Her next appointment is scheduled for the beginning of June since the treatments should be seperated by 6-8 weeks. (we are going closer to eight weeks because we're expecting our new baby at the end of May)

Well, Melissa's 2nd laser surgery was July 2, 1999 and all things considered, it went well.
We got there an hour early for the application of the EMLA cream. So far, so good. Even the baby, Sarah, was cooperating. Our other dd, Kristen, was with my in-laws.
When it got close to the time for the actual laser, I told Melissa that it was almost time and she started getting a little nervous (she was fine until that point). She remembered that it hurt the last time and told me she didn't want to do it. I convinced her that although it will hurt a little (even with the cream, the lip is very sensitive) it will only last a minute and then she'll be done. She was brave and went into the procedure room with her head held high.
It did hurt her, but as I said it was over in a minute. I think the laser was turned up a bit this time because she bruised immediately; last time she didn't bruise as quickly. I guess in about a week or two when the bruising subsides we'll be able to see the results of this treatment.
There was no pain following the treatment and Melissa asked for a pretzel on the way out of the doctor's office (hey, what's a trip to NYC without a pretzel and a hot dog? LOL).

August 20, 1999. Hopefully this is the one of the last installments of the "Melissa saga".
We went to see Robin Ashinoff, MD, this morning for a follow up/laser surgery appointment. It was decided that Melissa needed a quickie treatment and it was done then and there. This time the EMLA cream wasn't used since it didn't seem to help her with her last two treatments. The doctor "zapped" her less than a dozen times, but the intensity on the laser was turned up to 7 (as opposed to 6.75 for the last two treatments). Again, she cried out during the treatment, but thankfully, it was over fast and Melissa was fine.
We go back for a follow up to this appointment in eight week's time. Hopefully that will be the end of Melissa's story (Dr. Zide, the surgeon that did the reconstruction surgery, wants to see her in a few years, though).

October 22, 1999 - Off to Dr. Ashinoff again.
This time, Melissa "only" needed five zaps of the laser. One on her cheek and four along her (lower) lip line. She did great and only cried out a little bit during the treatment. She got a yummy treat from the doctor this time around - a chunk of Godiva chocolate! (the doc usually has a box of toys for the kids to choose from, but Melissa heard "chocolate" and chose that instead... LOL, a girl who takes after her mom!) We don't have to return until after the new year.

January 7, 2000 - Dr. Ashinoff
Dr. Ashinoff agreed that Melissa needed just a little more laser surgery for a couple of spots below her (lower) lip line. She gave her four quick "zaps" and it was over. Nothing was needed on her cheek this time around - yay!
It is getting harder to bring Melissa for these treatments because she knows what's going to happen. Since the EMLA cream didn't work for her, she gets the laser without any numbing. :o( It hurts her.
Even though she is a brave little girl, it still frightens her when she hears she needs a little more. This time, she grabbed me by my clothes and buried her face in my breast crying. I felt so terrible prying her away to have the laser done. The surgeon called in a second nurse to help hold her down for treatment.
I know it's a quick procedure, but to hear your "baby" crying in pain and fear is hard.
At least I know we're finished until, at the earliest, April.

April 14, 2000 --- Today was our last appointment with Dr. Ashinoff, our laser specialist!!! Woo-hoo! :o)
As usual, our appointment was right on time. Melissa was a little nervous about going, but as we tell her what's going to happen a few days in advance, she was prepared. We barely got to sit in the waiting area (and watch the boats on the river) when the doctor called us into the exam room. Dr. A is very good with Melissa and tells her how good she looks and basically fawns over her and talks to her like she matters (she does). I think this is a great trait when working with children. Anyway, the doc takes a look and compares the "before" pics with what she sees now and said that after this treatment, Melissa's finished! That was the best thing I could have heard. :o) She gave her about a dozen "hits" and then Melissa was given her choice of a toy and stickers (yep, I guess the doc feels the kids deserve something after treatment, too). The whole appointment lasted less than a half hour and then we left to get Melissa her ritual pretzel.

June 19, 2000 --- Today we went for a consultation with Dr Barry Zide (the plastic surgeon) to see what he thought of Melissa's progress. He said he's fairly happy with the results so far, but could be happier about the color of her lip. He said someday she might like to get that fixed (with tattooing). He also said he'd like to see a better difference between her lip and under her lip and maybe a little more definition of the lip line. These were all things we were expecting him to say, so we weren't surprised. He told us that since her hemangioma may still be involuting (going away) he didn't want to do the surgery any time soon and he'd like to see us in a year. Woo-hoo! No impending surgery dates for Melissa. :o) She was very happy to hear that. Easy appointment, right?

October 29, 2000 --- We went to the first annual Vascular Anomolies Family Day at NYU Medical Center where we saw several of the doctors Melissa's been treated by and also had a lot of fun meeting other kids and parents. There was tons of food as well as things for the children (magician, crafts, workshops) and parents (workshops - insurance, support, etc.) It was very nice to see Dr. Blei again (she's one of Melissa's favorite doctors) and chat with her. We also talked to Dr. Zide who gave us a quick consultation while we were there. He told us about a new procedure that can help even out Melissa's lip and he put us on his list so he can have the information sent to us. I can't remember the name of the procedure or I'd be doing a little research on it while I'm waiting. Oh, well, I guess I'll have to wait patiently. Anyway, the day was fun and it was nice to go into the city for something good for a change. Oh, I almost forgot... there was a Chinese Auction type fund raiser and we won two of the prizes - hand made porcelain dolls! Now, we'll have to go into the city again for something good - to pick them up! :o)

August 3, 2001, the beginning of the end... Melissa's last laser surgery!
As usual, she was quiet for the ride into NYC to see Dr Ashinoff. We dropped off the other girls at my inlaws and had a quiet ride to the office. We tried to get Melissa to chat with us, but she was nervous (because she knows what to expect) and wasn't talking much. We got lucky with parking and found a spot on the street (yay... no parking fees!) which was only a half a block from NYU Medical Center where Dr A's office is located. Melissa brought "Tina" (her favorite doll) with her and she was ready to go. We saw Melissa's favorite nurse, Alice, but she wasn't scheduled to work with Dr A that morning... darn! We were called into the procedure room shortly after arriving and when Dr A came in with an intern, she said there really wasn't much left to laser... maybe three spots. Whew! So, everyone in the room don the special glasses (Melissa laughs at us) and Melissa's laid down and her eyes are covered for protection. One..... two..... three............. four! Ouch! - that was Melissa complaining about the last zap! She counted and wasn't ready for it. Anyway, that was it! This part of Melissa's treatment is over.... no more laser!
As usual for Melissa, on our way back to the van, she asked to visit Dr Blei. Since Dr A's office is only a block or so away from Dr Blei's, we told her we could stop by but weren't making any promises about seeing her.... she might not be there, she might be too busy, etc. Melissa understood that and off we walked. Well, Dr Blei was in her office and did come out to see us! :o) Melissa hugged Dr Blei and said hello. Dr Blei, in turn, took Melissa's pic and basically made a fuss over her "graduate". Dr Blei also had something for me; a book entitled Funny Face which was written by the mom of one of her other patients (he has an AVM). We thanked her for taking time out of her busy schedule to visit with us and I also thanked her for the book. It made Melissa's day to see her favorite doc!
Dr Zide said he wants to see us in three months.

Melissa's now in grade school. She loves her teachers, dance lessons, soccer and Girl Scouts. She's a very happy little girl and has a high self-esteem. If someone asks her about her face, she'll tell them that she's had surgery for her hemangiomas and leaves it at that.
Most likely, she'll opt to have a little more work done on her lower lip as she gets older. Right now, it's kind of mottled in color and a little "bumpy"... both of which we've been told can be fixed (with tattooing and resurfacing). We'll keep that in mind. As it is, I'm sure Dr Zide will want to see her again. Of course, I'll add about that appointment after we have it.

Thank you all who have read all this (I know, long saga!). If you or someone you know is dealing with any type of birthmark, please come to parentsplace.com's support board for Birthmarks & Hemangiomas at http://messageboards.ivillage.com/iv-ppbirthmarks. Another wonderful place for support and information is MSNGroup's Birthmark support board. And, as always... National Organization of Vascular Anomalies (formerly Hemangioma Newsline) has tons of helpful information.

:o) Laurie
e-mail me!

P.S. The insurance company did end up approving everything for payment - including the little accident after the second surgery. If you have any questions about how to fight your insurance comapny, ask me... I've done a lot of fighting with ours and know some of the ropes.