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Spinal Lipoma
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Posted 2009-12-28 1:20 PM (#38527)
Subject: Spinal Lipoma

New User

Posts: 1

Need help. My Daughter was born with a very rare genetic disorder. After 6 months we finally discovered she has Hemi-hyperplasia Multiple Lipomatosis. As far as we know including her there are only 14 know cases in the world. When she was 3 months old a lipoma on her back started to appear. now that she is 11 months old it is bigger than my hand. after a lot of persistance our geneticist finally ordered an MRI so we could go see a surgeon to have it removed. My concern wast that the lipoma was going to consume her entire back. about 3 weeks ago she had that MRI done. The results were overwhelming.... The Lipoma has consumed her entire back, and they discovered there was another lipoma in her spinal column. We saw a Neurosurgeon who ordered another MRI to study just the spina and 2 days later he said we needed surgery before the lipoma causes permanent damage. Knowing spinal surgery is very risky and scarry we got a second openion. This neurosurgeon said absolutely no surgery at this time. But that she may need surgery in the future (2-3 months later).

Has anyone had experience with their children going through spinal surgery because of a lipoma? If so what are your recomendations.

We are lost and don't know what to do. We don't want to be to agressive and cause damage yet we don't want the lipoma to cause any damage either.

Thank you for your help.
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Posted 2009-12-29 12:58 AM (#38530 - in reply to #38527)
Subject: RE: Spinal Lipoma


Posts: 3243
Location: Utah

Hi Erin,

Welcome.  There are several kids here who have had simple/straighforward lipomas or some other tethering of the spinal cord.  My son, Braydon, had a fatty filum (the most basic tethered cord in the neurosurgery world).  He has had two surgeries to untether/release the cord.

I hope you are seeing the top neurosurgeons in the country for this.  Lipoma in the spinal column can be dangerous.  You want to make sure you have all your options laid out and someone willing to help you make the right decisions at the right time.  Do you mind telling us where your daughter is being seen by neurosurgeons?  Maybe someone here can recommend a neurosurgeon who may have some experience with your daughter's condition.  Having an MRI is good.  You could send that to several neurosurgeons and ask for suggestions/recommendations.

Good luck to you.

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