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My Son Has Macrodactyly

WELL HERE IS MY STORY WHEN MY OLDEST SON WAS BORN IN JAN OF 2008
ABOUT AN HOUR AFTER HE WAS BORN WE NOTICED SOMETHING WAS WRONG
WITH HIS HAND BUT NOBODY WOULD TELL US WHAT WAS GOING ON.
SO ME AND MY WIFE LET IT GO THINKING IT WAS NORMAL I WOOLD GO BACK
IN A FEW DAYS WELL WE WERE WRONG.NOW COME TO FIND OUT HE HAS MACRODACTYLY
IN HIS LEFT HAND.HE HAS JUST TURNED 3 AND HE KNOWS SOMETHING ISNT RIGHT
WE WORK WITH HIM TO TRY TO UNDER STAND HIS CONDITION BUT ITS STILL KINDA HARD
SENCE HE IS ONLY 3.HIS HAND HAS GOTEN TO THE POINT WERE IT HURTS WHEN HE BUMBPS IT
ON THE SMALLEST THING WEVE HAD 2 DR APPT IN THE LAST YEAR AND THEY SEEM TO
BE NO HELP AT ALL.I WISH SOMETHING CAN BE DONE SOONER FOR HIS HAND ITS SO HARD TO
SEE MY SON IN PAIN THEY WANT TO WAIT TELLTHE FINGERS HAVE GREW NORMAL SIZE
AND THEN CUT OUT THE GROWTH PLATES AND STRATEN HIS FINGERS BUT BY THEN WHAT IF ITS TOO
LATE THE THEY HAVE TO BE CUT OFF AND I DNT KNW HOW WE CAN COPE WITH THAT IF ANY BODY OUT THERE HAS ANY ADVISE
PLEASE FEEL FREE TO SHARE
LOSTINTHISWORLD LOSTINTHISWORLD 22-25, M 6 Responses Jan 23, 2011

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I'm a 19 year old female with macrodactyly, I've had surgeries when I was very young on my left hand in which my pointer finger was removed. I believe I had one of the worst surgeons due to the unsightly scaring on top of the undeniable deformations.
I'm posting this because it's one of the bad nights, where I experience pain to the point of sobbing. I just texted my mother and am seriously considering surgery at the start of 2015.
I am tired of the awkward hugeness, pain, and not being able to use my hand for long periods of time like everyone else due to extreme discomfort.
At this point I'm not sure what surgeon we shall go to, or what will be preformed upon surgery. All I know is I can't live with this the rest of my life.

I had not heard of macrodactyly until this morning, and though I have no advice, good luck with this. You're in my thoughts!

Check into going to a Shriners Childrens Hospital...that is where we started. My daughter is 7 and we are going for her 2nd surgery in the morning, the first was when she was 4. You may have to be referred by your family physicians, but it is worth checking into. It can be controlled and corrected with time....and I personally would not wait until his fingers stopped growing, it may be too late by then.

I would love to know about your son hand.<br />
<br />
Best luck

Hi<br />
<br />
I myself was born with selective macrodactyly on my right hand, index and middle finger. I went through 3 surgeries to have it corrected when i was aged 3, 6, 9. It can be controlled and corrected. Find a good doctor who knows what to do and it will be alright. And don't worry about amputation or things like that to scare yourself alright?

Hello.
I would like to hear more about your story. Was your finger very functional before your surgeries? How are they after surgeries? Did you do surgeries on both of your fingers? If so, what did you have done at what age? My son was also born with a large middle &amp; ring finger on his left hand. Currently he is 8, his fingers are adult finger and I don't know if we should wait to do surgeries. How is your finger now? Please tell me your story. Thank you so much!

Boston childerns hospital they can help you.

Did you go there? How did you like the Hospital? What doc did you see?