My husband just got diagnosed

My husband, who is 32 just got diagnosed with spinal lipomatous...we know a little about it, but we can't seem to find anything on the web about it except you have to have surgery in order for any hope of normalicy.  can anyone please point us in a direction of a good web-site, or information.
thanks

[amythist2779]

Hi there. I have never heard of such a thing, but I am really bored tonight and I thought I would try and help you out. Ive been looking online and have found a few things but I am not sure if I am looking at the right thing.

In your words could you tell me what spinal lipomatous is? When I plug that into the search engine I dont get much, but when I did some digging I found other things  but with different names. I am wondering if its the same thing or if the symptoms are even related. What I found for spinal lipomatous is that it usually occurs in children under the age of 5. But what I found after doing some digging was that its sort of like a benign fatty lump under the skin and men tend to get them in multipule places on the body. Is that what your husband has? I mean the bump under the skin? and does it cause him any pain? also does he have any dimples or dark patches of skin, or patches of hair on his back? Answers to these questions would help me narrow it down a little bit I think.

If you are still needing help I am avaliable and I dont mind helping. I like a good challenge now and then. Especially on something I have never heard about, just more information to feed my brain...lol. :) Just let me know. Till then take care.

[leigh1972]

hi...thanks so much for the help...he goes to a endocrinologist this week...to find the cause for this.  what we have found it states that it is typical for obese, or people who have used cotizonal steriods for many years.  neither of these fit my husband.  
no dark patches, and no hair...we found that also...but does not fit that.  we don't know the typical age range for this, but his doctor is leaning towards genetics.  
it is very painful...and there is no comfortable position, standing, sitting, walking, riding.  needless to say, his life has stopped because of this, there is no relief.
it seems the only hope for normalicy is aggressive surgery.
when we go back to the doctor this week i will post what we found out, maybe that can help.
thanks so much for the help
leigh