Hemangioma Revision Surgery- current pic of scar

Mrs. Fancy Pants recently left me a comment on my Hemangioma revision post:

Hi Sasha, my daughter will be 3 in August. I've referenced this blog many many times since hers became ulcerated at 3-4 months old. We have a consult with the surgeon in November (he wanted to wait for a non sunny season). He mentioned there were 2 schools of thought...getting it off early, so it's over with...or waiting til she was 14 and stopped growing. He said that the benefit of getting off early is so that she won't have to worry about it (people comment on it often, and she is aware of it already) but that her scar may be a bit wider than it would be if we waited til she was older. He said it was up to us. I was just curious if you had a more recent pic of this? It looks like it's been a few years now?

Yes, it has been a few years- she turned 7 in January and her last surgery was just a little over 4 years ago.

We are *very* pleased with the result! To see progressions pics of WC's Hemangioma journey, visit this post.

Scar from Hemangioma revision surgery

Age 7 years, a little over 4 years after surgery

In my personal, non-medical-expert opinion, it is better to do the surgery earlier. I was told that the thick scar tissue would not stretch as she grew, so that it could actually be tight and painful as she got older. Note that it took two surgeries to do the scar removal- doing it in two steps allowed her skin to stretch naturally.

I hope this helps Mrs. Fancy Pants!

Hemangioma Update

I have been getting a lot of hits and emails lately in regards to WC's hemangioma journey. I realized it's probably been over a year since I took a pic so I grabbed my camera yesterday and took a quick shot.

I am amazed at how good it's looking! I left this picture full-sized, so you are welcome to click on it to see it larger.

August 2011 - 5 1/2 years old, after two scar revision surgeries

Here's the progression of her hemangioma:

5 weeks

8 weeks

9 weeks

13 weeks

14 weeks

17 weeks

18 weeks

19 weeks

20 weeks

22 weeks

almost 7 months

10 1/2 months

1 year

15 months

18 months

2 years

Before first surgery in Oct 08 - 2 years and 9 months old

March 2009 - This was taken before her second surgery

June 09 - two surgeries complete


June 09 close-up

To read more about our hemangioma journey, click here.

More Hemangioma Information

I have gotten quite a few hits and comments lately about the post I did on WC's hemangioma and the pictures I took as it ulcerated and ultimately healed. I also posted several pictures of her H showing the scar revision surgeries we have done over the past year.

Several people have asked for advice and I want to do an overview post.

First of all, not all hemangiomas will ulcerate. Ulceration is caused by rapid growth, and as this happens, if the overlying skin is unable to handle the growth, the skin will break open and ulcerate. Also, not all ulcerations will get infected. WC's never did.

Typically, most doctors recommend a "wait and see" approach if the H is not ulcerated and does affect breathing, eating, or vision. So if you don't fit in these categories, you most likely won't need to see a specialist.

Some doctor recommendations I got:

Dr. Zide in NY
http://www.hemangioma.com/
He is a pediatric plastic surgeon. He did surgery on a baby I know of who had one above her eye because there was danger of it affecting her vision. If you email him a picture, he will give you his opinion. He is very hesitant to do surgery if it is not needed. He told us he would not do surgery on WC because it wasn't needed at the time. He said he would rather wait and do a scar adjustment surgery later.

Dr. Waner in NY
http://wehealnewyork.org/services/vascular_Birthmarks/
Dr. Waner is pretty much the pioneer in the field.

Dr. Levitin
http://www.birthmark.org/node/152
When I chatted with Dr. Levitin he was in NY with Dr. Waner but it looks like he was relocated in LA. Levitin will give his opinion via email- You may reach Dr. Levitin via email at drlevitin@gmail.com, through his website at http://www.vascularbirthmarkcenter.com/.

Dr. John Burns in Dallas - this is who we ended up using
http://www.kidsplastsurg.com/vascular.cfm
Dr. Burns is a Pediatric Plastic Surgeon who specializes in vascular abnormalities. Really, I think they are the best kinds of doctors to see for this. I don't know that they will give opinions from pictures.

Dr. Buckmiller in Arkansas
http://www.otolaryngology.uams.edu/vascular/index.asp
Dr. Buckmiller trained under Dr. Waner and gave us an opinion via email and suggested that we wait to get a better cosmetic result, since the ulceration had healed.

Here is the email address I sent the pic to to get an opinion from Dr. Buckmiller.
BussardDianeM@uams.edu Diane Bussard

Here are a few online forums that are helpful:
http://www.novanews.org/
http://www.novanews.org/NOVAPhysicians.htm list of physicians by state

http://www.birthmark.org/ Vascular Birthmark Foundation

I know I overloaded you all with links- hope some of it is helpful! If you have other questions, ask away.

So here's is what I would do if I had a baby with an ulcerated hemangioma:
Email Dr. Zide, Dr. Levitin, and Dr. Buckmiller and get opinions from them. Also try to see a doctor in your area that is on the VBF or NOVA recommended list. My experience is that it is best to see someone who specializes in vascular birthmarks- we settled on a Pediatric Plastic Surgeon that specializes in vascular birthmarks and I feel good about that.

Hemangioma Revision Update

The Wild Child had her second hemangioma revision surgery in March 2009 and we couldn't be more pleased with the results.

This was before the second surgery

And this is now

We keep it covered with Mepiform Sheeting 24/7 and also go overboard and make her wear a thick white athletic wristband any time she goes outside- so you can see a bit of a tan line- although I promise we use sunscreen! We are supposed to be using the Mepiform for at least 3 months, but I have read about fabulous results for people who have used it for around a year, so we're going to continue using it for now since we have quite a bit left.



Here's an extreme close-up.

If you are new to our story and want to see the progression in pictures, click here.

Home After a Great Day

This morning, before surgery

Our goal for this second (and final) surgery was to remove the remaining scar tissue.

Tonight, after surgery

They were able to remove all the scar tissue! Don't be scared by the uneven-ness of the wound- they assure me that as it heals, it will stretch and smooth out nicely. We are so pleased!

We let them know that we wouldn't be letting her have the Versed that caused such a major problem last time. When I told the anesthesiologist that, she said, "Oh, will we have a problem taking her back to surgery without it?"

I assured her that WC has never met a stranger and would have no problem going back to the surgery un-medicated. The plan was to give her gas once they got her back in the surgery room, followed by the IV.

The surgery took less than 20 minutes, and when they wheeled her back out to us, she was drinking an apple juice box. She saw her brother's Popsicle and of course asked for one.

The doctor and nurse practitioner came out to chat about the results and let us know that WC was "quite entertaining" before they got started with the surgery.

I can't tell you how glad I am to have this all behind us! Thanks for all your prayers over this hemangioma journey!

Heading South Tomorrow

for The Wild Child's second and final hemangioma scar revision. It's just an outpatient surgery, so we'll hopefully be home by dinnertime.

I'll take some before pics and some after pics when the bandages come off. I'm very excited to put this all behind us.

Keep us in your prayers!

The Bandage is Off

Well, the bandage is off. Mr. Sasha found it on the floor in the living room on Saturday afternoon.

So we've gone from this:

To this:

I'm still not convinced that all her thrashing around in the recovery room didn't mess up the dermabond. But we're going to see the doctor tomorrow so we shall see what he says. Tomorrow we'll discuss scar care and I'm sure they have us do something to minimize scarring.

Either way, looks like we'll be doing another surgery to remove the remaining scar tissue. I can't imagine not finishing what we started.

It is amazing to me to see how much they removed.

I'll update tomorrow night!

The Nurse Practitioner Responded

and said not too worry. I hate to quote her without her knowing it, but she basically said if it wasn't oozing, they weren't worried at all and we'd be amazing at how much better it will look with time. Something about if they made it perfect now, the skin would stretch as it heals and it wouldn't be perfect anymore. Now, with a small amount of bunching, it will have room to stretch as it heals. Or something like that.

So we will see them in person next Tuesday and get our scar management plan- I assume it will involve some vitamin E oil or Mederma or those scar sheets or something. I'm on board with whatever they say!

Change of Plans

Well, we were supposed to be headed south today for our post-op visit to discuss scar care, but since poor WC woke up throwing up in her bed yesterday morning, we've rescheduled for next Tuesday.

I'm getting worried as the bandage wears off though. Click on the pic to make it bigger- see that red raised area on the top part of the wound? That doesn't look right to me.

I've emailed the nurse practitioner to get her opinion. I'm pretty much convinced that when WC was having her devil-possessed drug-induced fit after surgery, she messed up their work. They did internal dissolving stitches and Dermabond on the top layer- and I'm no expert, but what if her thrashing around messed up the part they did the Dermabond on?

I'm crestfallen.... Now I am thinking surgery #2 is definitely in our future and I was really hoping we were done.

What do you guys think? Any experience with post-surgery wounds?

All's Well That Ends Well

We are home. And the surgery went great. Here's what her arm currently looks like. They told us this bandage will come off on it's own in a few days.

I'm not going to bore you with all the crazy details of the day, but here are some highlights:

• WC threw up not once, but twice, in her carseat on the way there- evidentally she doesn't do well with orange Gatorade on an empty stomach
• WC can never ever again have Versed because she turns into the devil- hitting, kicking, biting, spitting, basically thrashing around trying to hurt herself and everyone around her
• In fact, after 45 minutes of her beating us up, they had to give her hydrocodone in the recovery room to knock her out so we could get her to calm down so we could start home
• And upon arriving home, we had two flat tires

Mr. Sasha and I appreciate all your thoughts and prayers. We are glad that the procedure went well and anxious for the bandage to come off so we can see it. We may or may not have another procedure done in six months or so to remove the rest of the scar tissue. If it look pretty good, we may just call it done. I needed a beer after all that was over and I'm not sure I want to do it again.

Ice Ice Baby

Well, we haven't left yet. Turns out WC's surgery isn't scheduled until 12:30 tomorrow, so we'll just drive down in the AM and save ourselves a hotel stay.
So my main problem right now is how to keep her happy before the surgery tomorrow morning since she can't eat anything after midnight tonight. She can have water and gatorade until 9 am tomorrow though. I got a fabulous tip from a friend to get her some Sonic ice and let her "eat" that on the drive down tomorrow. I think once we get to the surgery center at 10:30 and start doing pre-op stuff, we can keep her distracted.
But I am open to tips and suggestions. I am packing lots of toys and books, including Aquadoodle stuff and coloring books and crayons. Lots of movies too since we have a portable DVD player.
Any ideas?

Where's Sasha?????

Just wanted to let you guys know I'll probably be a bit MIA for the rest of the week.

We're headed south tomorrow to spend the night in a hotel since WC's hemangioma scar revision surgery is scheduled for Thursday morning. Assuming all goes well, we'll be headed home sometime Thursday afternoon since it's an outpatient surgery.

This is also one of my busiest times at work, so I'm trying to get quite a bit done before we leave tomorrow.

We'd appreciate your thoughts or prayers for a safe trip and an uneventful, successful surgery.

Update on WC's Hemangioma Revision Surgery

When poor WC was so sick last month, we had to cancel the hemangioma revision surgery that was supposed to happen on August 7.

And since she ended up with a staph infection in her chicken pox, we were told we had to wait at least 1 month after she was declared infection-free.

So I called on August 22 to let them know she was released from the pediatrician, and was hoping they could rescheduled us soon.....

October 30.

Damn that's far away! But we are on their cancellation list and hopefully they'll have a spot for us earlier.

Hemangioma Surgery Scheduled

On Monday, WC had her pre-surgery appointment with her Pediatric Plastic Surgeon in Big City In A State Near Us and it went fabulous! He will be removing the remnants of her ulcerated hemangioma. They will be able to remove all of the hemangioma and all she will be left with is a pencil line-type scar across her arm, like the black line I have drawn on the picture above.

We were expecting that they would want to do the revision surgery in December or January, but they actually want to do her first surgery on August 7 and do the second and final surgery on December 4. We didn't know that it would take two surgeries to remove the remnants of the H, but figured that was a possibility.

The best part of all this is that it is outpatient, and they'll use internal dissolvable stitches and use dermabond on the top layer, so they said she could even get it wet the next day! We feel so good about this- so much better than we expected.

She was quite the ham at the appointment and was so friendly to the doctor. I think she will do great, although I may need a stiff drink to get me through it since I am a worry-wart. But I know she will be in great hands, so I think I can make it through. I am just glad to put this all behind us and stop getting the question "What happened to her arm? Was she burned?".

Hemangioma Treatment Question

Anonymous writes: hello! our little princess also has a 4cm hemangioma located at her left deltoid area.. i wonder if your child underwent any treatment and if YES, kindly enumerate them..so we could have a better option on which treatment modality we are to take after considering all option offered by her physician..hoping for your reply..

We actually didn't do any "treatment". Our local pediatrician told us to wait it out. Once we decided that probably wasn't the correct advice since she was in so much pain for over 2 months, I started doing extensive research on the Internet and found a pediatric plastic surgeon who specialized in vascular anomalies in a neighboring state a made an appointment. The quickest appointment they had was 3 weeks away.

Unbelievably, during that three week period we noticed that the ulceration was starting to heal and by the time we got to our appointment, part of the scab was even beginning to come off! He said that if he had seen us sooner there would have been things they could have done for the pain, but since it was starting to heal, we should be OK to wait it out. He did tell us to watch for another growth phase between 9-12 months and there was a chance it would ulcerate again.

Although it did appear to grow a little bit more from 9-12 months, it did not ulcerate again (praise God!) so the doctor said they didn't need to see us again until she was 2 1/2, at which time they would assess and schedule a scar revision surgery around age 3.

One important thing I should ask, Anonymous, is if your daughter's H is ulcerated. If not, most doctors do agree to leave the H alone if it is not in an area that affects breathing, vision, or eating. If the H leaves a cosmetic defect once it involutes, a revision surgery can be done around age 3 like my daughter will have.

Hope I answered some of your questions!

Ulcerated Hemangioma Pictures

I get A LOT of google search hits from my hemangioma posts. I thought it might be useful to put my timeline of pics all together. If you are squeamish, I recommend you skip this post.

I did a lot of internet searching out of desperation when WC's H started ulcerating, and I didn't easily find any pics like these, showing in order how an H opened up and then healed.

If you ever need any information about hemangiomas, or just someone to talk to who has been through one, just email me.

5 weeks

8 weeks

9 weeks

13 weeks

14 weeks

17 weeks

18 weeks

19 weeks

20 weeks

22 weeks

almost 7 months

10 1/2 months

1 year

15 months

18 months

2 years

I also want to send you to another post I wrote on this subject that mentions specific doctors and contact information.

Hemangiomas

I am re-posting this explanation of The Wild Child's Hemangioma for PickleLovingPrincess.

Above is a picture of the hemangioma on The Wild Child's arm at 5 weeks old. I wasn't thinking this was going to be that big of a deal, so I actually don't have any pictures from earlier in her life. It started flat and light red, but you can see by this time, it was raised and getting dark. The part in the middle that is purple is the part that was soon to ulcerate (break open). This when I realized I needed to start taking weekly pictures to document the rapid growth.

WC's H is most likely a Superficial Hemangioma (formerly called Strawberry Hemangioma) because it is located in the surface of the skin. They are characterized by a bright red color with a well defined border. These lesions may vary greatly in size, location and shape.

PickleLovingPrincess, you mentioned a Deep Hemangioma (formerly known as Cavernous Hemangioma), which is often larger than a superficial lesion. They are located beneath the surface of the skin and are characterized by a bluish lump or mass. They are generally soft to the touch.

It is possible that WC's was a Combined Hemangioma or Mixed Hemangioma, both deep and superficial. These may appear as a lump or mass in the skin with areas of red. They are often soft. We did not, however, have any testing done to see how deep it went so I have to assume it was just a Superficial.

This picture was taken at 17 weeks of age. The ulceration was at it's worst now, but beginning to heal. This was a stressful time for us- the ulceration was very painful and although we were fortunate that her H wasn't on her face as most of them are, but it was still in an area that was easily bumped (imagine threading those little arms into a carseat.....), which would start off a 2 hours crying spell because of pain that Tylenol didn't touch.

We also had some clothing issues because anything with a wristband was a problem, so I had a difficult time figuring out what to do about winter PJs.....

It was at this point that our ped finally agreed that we needed to see a specialist. Up until now we were told "We don't do anything for those, just wait them out and they will go away on their own." (oh-so-wrong I would later find out....)

To make a really long story a little shorter (you can email me for the long version if you'd like) we found a doctor in a neighboring state who was a pediatric plastic surgeon who specializes in vascular anomalies. He let us know that even if the H fully involutes, she will still be left with a cosmetic deformity because of the significant scar tissue that formed because it was an open wound for so long. So our plan at this point is to do a scar revision surgery after her third birthday.

This picture was taken when she was about 18 months old. The area in the middle that has a different texture is the scar tissue.

It is amazing how much it has changed and it's amazing to me how much I have learned. There were times when I felt so overwhelmed and didn't know what to do or where to turn, seeing as how I live in Rural America and we don't seem to have a lot of people around here who are helpful in these situations. I don't know what our parents did without the Internet.......

I do have a wealth of links and support groups/forums if anyone is ever in need of them. Just let me know and I'll be glad to share my resources!