On November 14, 2015 McCoy had an MRI performed on his brain and spine, to check for the neurocutaneous melanosis. The radiologist at the Texas Houston Children's hospital, where the MRI was performed, confirmed that McCoy's results were negative for any melanin deposits on his brain and spine. His MRI images have been sent to Dr. Barkovich. Dr. Barkovich is the Professor of Radiology, Pediatrics, Neurology and Neurosurgery University of California, San Francisco, and is regarded as the foremost expert in detecting neurocutaneous melanocytosis (NCM), using non-invasive techniques that are revolutionizing the diagnosis of this confounding condition. Since 2008, by formal arrangement between the University of California and Nevus Outreach, Dr. Barkovich is able to read the MRIs of children with large nevi to determine if they have NCM, and when they do, where it is and how large it is. He is the radiologist who developed the protocol for performing these MRI's, so he is considered an expert in this. This has brought comfort and hope to many families affected by large nevi. Our family is awaiting the results from Dr. Barkovich, which we expect to receive soon, in the next couple of weeks.
McCoy has also met with a pediatric plastic surgeon here in Dallas, Dr. Jay Burns, who is considered one of the best in his field. He has removed nevi before. He is a member of the prestigious Dallas Plastic Surgery Institute, a renowned group of internationally known plastic surgeons. Dr. Burns currently is working with a family whose son has a giant nevus on his lower back and bottom area, and they are in the removal process now. We (Tanisha, Dallas and McCoy) met this family and their son in their home, and have become friends and a good source of support and information for one another.
Through much fasting and prayer, we have decided to proceed with removal of McCoy's nevus. This process will be the hardest thing we have been through, but we know Heavenly Father will take care of us and be with us every step of the way.
One blessing we choose to focus on is the fact that McCoy will not remember any of this. It has often been said by fellow parents of nevus owners that removal is harder on the parents than it is on the child.
Information given us by Dr. Burns:
Expected removal process:
Insert 6 tissue expanders, 3 above nevus (1 on each
shoulder, and 1 in between, near his neck), 2 on each side of the nevus,
and 1 large one below nevus. The 3 on top are very small, and even
though expanders can expand to several times their size, it will be a
play by ear as to how much we can really get those expanded and how much
skin we can get from those 3. Burns may expand those as much as
possible, then take them out and re-insert 1 large one on top and keep
expanding until he has enough skin on top as well as all around. During
insertion surgery, Burns will put some fluid in the expanders (so they
are not completely empty when inserted, they're already a tiny bit
expanded). McCoy will heal for 2 weeks, then fills begin every week.
Fills typically occur on Wednesdays, they can work around our schedule. A
needle will be inserted through the skin into what is called a port. This port is where the fluid is injected in order to expand the tissue expander.
Every expander has a port connected to it, so there will be 6 ports. The
ports will all be within the nevus (so scars will be gone when nevus is
removed). The incisions for placing the tissue expanders will also be
right on the edge of the nevus so that when the nevus is removed, those
scars will be gone as well. Expansion will take place for approx 6
months (if possible and if nothing goes wrong). Every week we will go to Dr. Burns office to receive fills in all 6 of his expanders. A numbing cream will be given to us in order to try and reduce the pain of the needle. We will fill for approximately 6 months, as mentioned before. Thats how long Burns
feels it may take to get enough skin. If all goes well and no unexpected
things occur, he will then perform the excision surgery. He will remove
all expanders and ports and use that skin to pull over the nevus area,
after the nevus is removed. The nevus tissue will be sent to pathology.
The healing will take several months even up to years. It is extremely
common for the incision to pull and separate, especially on the back, as
children are wiggly and active and it tends to separate. This can be
painful and cause infection sometimes. Proper care for the incision and
drains will be discussed closer to excision surgery. During this whole
removal process, Burns does not do anything for satellite moles. The
focus is the expansion process and satellite moles can be tackled later
if needed.
Things that can go wrong: incisions don't heal properly
after insertion of expanders. Expanders become infected/the skin
surrounding it. The expander can poke through the skin as the skin
stretchs and becomes thin. McCoy may get sick, at which time fills are
not performed. An expander can get a leak. Skin may stretch worse than
expected, thus affected final outcome of scar during excision.
Potential complications of surgery:
- Skin flap failure
- Infection
- Wound breakdown
- Bleeding or haematoma
- Hypertrophic or keloid scar
What are the chances you can remove the whole nevus in one shot? (only 1 insertion surgery and 1 removal surgery, with no complications)
It will be difficult, maybe 85% chance. Several things can go wrong. One disadvantage is that McCoy's nevus covers most all of his "good" skin on his back...the surface area of skin that I have to work with to stretch and expand is limited, which makes it difficult. The good thing is, it's all on his back. It's in one place, and this can help in the expansion process. He is also young, and the skin stretches better when a child is young. There are better situations, but there are also much worse - McCoy's is not the worse I have seen or performed surgery on. I've put in up to 12 expanders at one time. 6 is a lot, but again, it could be much worse.
What happens if we have an emergency and you're out of town? (Leakage, infection, anything to cause need for removal).
Burns has several partners & associates he would trust his own child
with, if he were gone extended amount of time he'd go over McCoy's case
in detail personally with another surgeon and have him perform any
necessary emergency surgery. That rarely happens if ever at all. Can
only recall maybe 2 cases that's occurred on. He will do the removal
himself though no matter what, it's more likely an emergency surgery
would interfere with an unexpected schedule issue (Burns being gone).
Burns is gone more frequently in the fall.
Is recovery harder with the more expanders placed, vs less expanders?
It's more about surface area than number of expanders. The more surface area that is pulled up in order to place an expander, the more uncomfortable that surface area is. So more surface area disturbed, more areas of discomfort. His expanders are small, even though he's having several placed.
How many ccs are you aiming for, or can you tell us how big the expander needs to get before you have enough skin?
A = B + C (a being needed length of 1 expander, b being length of nevus, c being length of skin where expander is)
Burns likes to fill & fill and keep filling until he basically can't anymore. Not really aiming for specific ccs.
When will surgery for removal be scheduled?
Not yet. Play it all by ear. Depends on so many factors: infection, unexpected issue, illness, how well skin is stretching, etc.
Can a nerve block be performed during insertion so he wakes pain free?
No (too much surface area would be affected and would be dangerous.) Works more for a limb surgery.
No (too much surface area would be affected and would be dangerous.) Works more for a limb surgery.
Will the expanders pull and move his belly button and or nipples?
No.
Will there be drains after insertion?
No, only after excision.
What is care like post insertion surgery? Wound care, etc.?
We'll go over in detail wound care after surgery. No drains after insertion, only excision.
If we lose an expander, can you keep going with the other expanders?
I would re-insert an expander where we lost one, and yes keep going. But that's only if the expander sprang a leak. If it's infected (the skin or incision), and you're far along in the process, that expander will need to be removed and the skin expanded will need to be utilized by excising some of the nevus, meaning all the other expanders would have to come out and I'd take as much nevus out as possible, but then we're done and we wait for a whole year. We cannot do anything until everything heals for 1 year. So hopefully that does not happen, as our goal is to get the whole nevus in one shot.
You only would re-insert an expander if there was no infection and just leakage, correct?
Correct. I may also expand the skin on top of his nevus (on
shoulder blades and neck) as much as I can, then take out those 3
expanders and re-insert 1 larger expander, then keep filling and
expanding until I can't expand anymore.
When an expander leaks, if it all gushed out quickly, will you lose all that skin quickly? How does that work?
It should never gush out quickly, and the chances of an
expander leaking are so so slim. But if it did leak, the answer to
losing that expanded skin is a yes and no - you won't lose any skin if
you act quickly (within a week-ish), but if you waited longer than that,
yes you'd lose skin day by day.
Is scar revision surgery common?
Somewhat. It just depends how well McCoy scars, and how it
changes as he grows. Scar revision is to make the scar thinner and less
noticeable, so it requires re-cutting the existing scar, and is full
surgery (under general).
is
a member of the prestigious Dallas Plastic Surgery Institute, a
renowned group of internationally known plastic surgeons - See more at:
http://drjohnburns.com/?gclid=Cj0KEQiA89u1BRDz8enExq7rvN0BEiQAaFCHm3h1PpzxV0deN-EMQTR4pERCwv-Far8-F0s165BLst8aAquB8P8HAQ#sthash.CQrKWjCV.dpuf
is
a member of the prestigious Dallas Plastic Surgery Institute, a
renowned group of internationally known plastic surgeons - See more at:
http://drjohnburns.com/?gclid=Cj0KEQiA89u1BRDz8enExq7rvN0BEiQAaFCHm3h1PpzxV0deN-EMQTR4pERCwv-Far8-F0s165BLst8aAquB8P8HAQ#sthash.CQrKWjCV.dpuf
is
a member of the prestigious Dallas Plastic Surgery Institute, a
renowned group of internationally known plastic surgeons - See more at:
http://drjohnburns.com/?gclid=Cj0KEQiA89u1BRDz8enExq7rvN0BEiQAaFCHm3h1PpzxV0deN-EMQTR4pERCwv-Far8-F0s165BLst8aAquB8P8HAQ#sthash.CQrKWjCV.dpuf
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