Internal Hemangioma

AnnA · #1 03-25-2010, 11:58 PM

My son has an internal hemangioma that starts in the neck and goes down through the chest cavity. It is pushing the trachea and spinal cord over. We discovered it at 3 months old. He is now 11 months and doing great. He will be taken off the propranalol next month and then he will have another MRI to see what is going on inside. I was wondering if anyone has had any experience with something like this and how long will it take to completely go away. I am pleased with his progress but nervous not being able to see progress without an MRI.

missy · #2 03-26-2010, 12:14 PM

That would make me nervous too. Imagine how bad it would be if there was no imaging that could find out what was going on!

Other parents will be around soon, but I have to tell you that your case is unique and you may not find many parents who have been through that situation.

Missy

gigi22 · #3 01-18-2011, 09:25 PM

Hi I read your post about your son. How is he doing now. My son is 2 he has about an inch size, from what I think it is a deep hemangioma. We are going to see a dermatologist tomorrow.

nickbar · #4 01-19-2011, 12:48 AM

please let us know how it went

AnnA · #5 01-19-2011, 08:42 PM

Please let us know how things went today....
As for my son, we are still on the propranalol. We tried to wean him off around 16 months but the MRI showed he had too much rebound growth. THey put him back on right away. We just had an MRI last Wednesday ( he is now 20 months) and it still did not go back down. THey are thinking he will be on the meds until he is three.
He was also born with the deep hemangioma on his back. It sounds a lot like the one you described.
Keep me posted on your appt.

savvymommyseattle · #6 02-20-2011, 05:17 PM

I hope things went well.

My son's deep hemangioma started to show at about 5 months. He is now 18 months and has been on Propranolol for almost a year. About 4 months ago they started to wean him a little and it came back within a few days. We will see the vascular specialist at the end of the month and discuss weaning again. His is more obvious as it is in his cheek and turns blue and raises up quickly. I am shocked by the effectiveness of Propranolol. We had denied starting it until the specialist determined that we would likely need to do surgery later as his skin was getting so stretched from it.

If you have any questions with our experience here you can email me anytime savvymommyseattle@yahoo.com