3 yr daughter lower lip hemangioma surgery , advice please - Vascular Birthmarks Foundation Forum
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  #1  
Old 06-18-2011, 04:28 AM
Kdiperi Kdiperi is offline
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Default 3 yr daughter lower lip hemangioma surgery , advice please

Since our daughter has been born she had developed the H on her lower lip. We have been going to CHOP in philidelphia and we were originally seeing dr. Karen Shah as our , she was always very friendly and amazing with Brielle and treatment . It had ulcerated pretty bad and had left a pretty deep scar on her lip . She was on steroids for a while which did stop it from growing out of control . now fast forward three years later and we went in for the first debulk operation which was performed by Dr.David Low in CHOP. Here is re I would really appreciate from feedback please . See we brought her home the same day , she had the entire scar removed and a good portion of the he ago make removed from under the skin. She had about 16 stitches through out to put the lip back . She looked great ! She had a full lip again , no scar and the H was alot lighter and flatter. About 7 days later the entire incision started to open from the bottom up , it had reached the top portion and a hole appeared and I had called the surgeon and he stated to put a bandage across the lip to help support and hold it together and to let it heal as this is normal for lip hemangioma surgeries that are perfomed on the lip that they sometimes do open up like this . About a hour later the entire thing opened like a zipper and she had a gapping hole in her face . It bled for only a minute or so but it w a very watery blood clot looking blood . I called the surgeon back again and he said he will see us right away the next morning , he told us to put neosporin on it and but the bandages across to hold it together and allow it settle down.he stated that the blood that did come out was whatever blood clot tissue was left in the hemagioma and the body was purging it out . He stated that this is a common occurrence with this type of surgery .

We went to his office and he had examined her. He said we literally have a waiting game now because the area was trying to heal very quickly and that the tissue on both sides of the lip area were regressing and tightening up causing stress on the incision and that with it being on the lip that the normal mouth movement was also causing stress which had caused it to pull open. We have another appointment on the 24th with him to see where we stand . Cuse as of right now my daughter hAs the entire left side of her lower lip gone and the right side center inflamed and swollen . The surgeon stated that he can't try to pull it together and restitch it because the tissue is too soft and damaged now from it pulling apart , that he needs to wait so he can reattach and fuse the area back together. She constantly just uncontrollably drools and when she eats or drinks sometimes it falls out . It's very very hard mentally for all of us . We can't figure out if this is something of the common with this kind of surgery like he stated , did we do something wrong , did he do something wrong ?????? Please any advice

I have photos I can upload for a better idea if needed to help
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Old 06-18-2011, 07:22 PM
smurph smurph is offline
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Oh my goodness..I'm practically crying reading this post. My daughter had surgery on her lip hemangioma last year at Boston Childrens (sounds very similar to your daughter's hemangioma/ulceration except on the upper lip) and I can only imagine how you must feel right now. If it were me, I would go get a second opinion ASAP. I would email Dr. Levitin with photos on this site or Corinne or Missy to see if there's anyone else in your area. I may be overreacting but I'm just imagining being in your shoes and wanting to see what can be done to remedy the situation.
When my daughter had her surgery last year, the doctor removed some scar tissue from her ulceration and debulked/shaped. She had stitches kind of like a zipper like you mentioned. It never opened at all or had any issues with bleeding, etc. It got very swollen/bruised and was at it's worst at day 2 or 3 maybe and then improved every day after that. It looked really pretty good a week later. The stitches all dissolved on their own (and I believe I remember the doctor telling me that he had stitched it all up on the inside as well.) She had to only have liquids/very soft foods for about a week or so and then softish foods for about a month or so.

I'm not an expert so I don't know if your experience is common or not, but I think you can trust your intuition that something is not right here??? I say, better to be safe than sorry, and get someone else to look at it! Here's some pictures of my daughter's hemangioma. There are some pictures on here from her surgery and what it looked like afterwards.

http://www.facebook.com/media/set/?s...l=a18fd285 c7

I am thinking of you and hoping that it all gets better soon. I'm sure it must have been stressful going into the surgery and then even more stressful to have these complications afterwards. Keep us posted. Yes, definitely post some pictures if you can! I'm sure others will chime in here, but that's just my opinion, after being through something similar.

Shannon
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Old 06-18-2011, 08:32 PM
missy missy is offline
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She is right. Email Dr. Levitin as soon as you can!
http://birthmark.org/experts.php

Missy
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Old 06-20-2011, 02:31 AM
Kdiperi Kdiperi is offline
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Default Photos From Surgery

here are some of the photos i have mentioned


Quote:


day before the surgery was done



3 days after the surgery when the scar removal and debulk was completed



8 days later , right when all the stitch's and the incision was opening



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Old 06-20-2011, 02:32 AM
Kdiperi Kdiperi is offline
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hour and a half later the entire wound opened

Quote:





this is as it stands today . despite all that has been going on this little girl has been simply AMAZING still happy as hell dancing singing and running around as if nothing is wrong with her.

update we have talked to the primary surgeons at CHOP yesterday and they had a board meeting regarding her current condition and stated that they all agree that it defiantly does not look infected , it is currently in a " remmulating stage " , is doing what it should be doing for a lip wound that has opened after surgery , and they also said that Dr. Low is one of their most advanced and best doctors on staff at the hospital and in the industry. Also we were told that the wound will be easier to close after it heals from the current splitting and healing process and that we should keep our appointment on friday.

i have gotten a couple of emails from doctors in ny whom i had emailed photos to and he stated the same that unfortunately at this point nothing can be done due to the tissue being too fragile and that it is a waiting game and that he has has preformed thousands of hemangioma surgeries and that unfortuantly on the mouth this is common. But it does usually lead to a better fusion of the lip because the medical scar is allot easier to work with than a ulceration scar. ive tried clicking on the link to ask levitin but it tells me to log in and i try and it tells me my log on credentials are incorrect ?
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Old 06-20-2011, 02:33 AM
Kdiperi Kdiperi is offline
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for some reason the photos are real small on here , sorry about that . the photos are large images with crystal clear clarity
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Old 06-20-2011, 03:08 AM
smurph smurph is offline
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Oh wow. That looks so sore. It's amazing how resilient kids are! I hope everything heals quickly. I'm glad you were able to show the pictures to other doctors too..it's always good to get a second opinion on anything like this I think. Good luck and keep us posted!
shannon
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Old 06-20-2011, 03:11 AM
smurph smurph is offline
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Just out of curiosity, if you don't mind,..can you explain what a "remmulating stage" means? I've never heard that term before.
shannon
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Old 06-20-2011, 04:22 PM
nickbar nickbar is offline
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Please let me know if I can help. I would be happy to call for another opinion...
please keep us posted on how she is doing.
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Old 06-20-2011, 10:16 PM
Kdiperi Kdiperi is offline
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Default Correction

I just talked to another physician today over the phone, we sent pictures to him and he had helped me in my correction of the remulating stage , it's actually called the granulating stage which is the healing processing of the tissue breaking down and healing . He also stated that breakdown of the wound probably cam from the corterizing of the tissue of the hemagioma and by not cutting the entire hemangioma out . From what I'm told is that dr David low is a VERY conservative doctor and I'm still told that he is one of the leading professionals in the field. From this stand point of him be bulking and leaving some of the hemangioma behind as such not to cut the entire lip off and leave no tissue , that's one of the things that couldve caused the breakdown . From what im told when you leave some of the hemagioma behind it actually goes into break down mode and the tissue actually starts to die because there is no more blood supply and it destroys the integrity of the area where the stitches . Hence weak dying tissue , break down of inner tissue , tension from tissue shrinkage and healing and lip movement , I guess it was inevitable it was gonna rip out ...... I guess . But the physician I talked to says he's a lot more aggressive and can possibly see my daughter and close up the area with injections to drain and a more tissue evasive procedure to try and close it up . He said that the conservative methods are just as good but it's a shame non the less it happen .

I'm just happy she's not in any severe pain right now and shes happy as hell as she usually is . on firday is when me and my wife are see how things are gonna go and when and where the next op will happen .

Yes I would gladly accept any other opinions from other surgeons via email or phone call to help ease our mental state or even if we did something wrong. We just really want to make sure that our angel is gonna be ok .
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