anyone else have lipoma

[hope]

Hi all, anyone else out here have lipoma sct? Been finding hard to get more info as most people here are not having lipoma. my baby girl has a huge one, and I really don't know what we are facing, be glad if anyone here can share experience.

Have anyone tried using laser to remove. All my local NS strongly disagree to do that, seems only hospital in US would do. Yet it's like impossible to remove lipoma.

[dcmiki]

Hello, I have been diagnosed with an Intradural Extramedullary Lipoma from T7-T12. I am 43, I was probably born with it. Surgery is scheduled for August 13th 2014, in Perth, Australia. I have noticed this thread comes under the heading of Intramedullary Spinal Cord Tumors but my one is definitely Extramedullary. I hope your little girl is ok. It is possible to remove Lipoma - either partially or completely, whether they use ultrasonic aspiration or CO2 laser the main objective is to decompress the spinal cord. I noticed your post is now a few months old. Has your daughter had her surgery yet? and if so, how is she?

[hope]

Sorry for my late reply. How was yr surgery? Hope it went well. Update us if you are still checking this website .

[dcmiki]

Hello,
Yes, I had surgery. i am now 3 months post op and doing fairly well. No pain and not on any medication. Only 10-20% ofthe lipoma could be removed as nerves had grown into it. I am left with a few nerve issues, numbness and tingling mainly. But overall i feel pretty good and very fortunate. How is your daughter?

[hope]

Hi good to hear from you, sounds like you have recovered well. Can you walk perfectly fine with those few nerve issues? Same as our case, very little was removed, less than 10% for us maybe, what did the doctor say about having the remaining there ? Seems like lipoma is very difficult to handle. We just really want to know what we could do with thehuge remaining. My daughter is recovering at good speed, but she hasn't walk yet , it's impossible for us to distinguish whether the delay was due to surgery or normal child development. We also dunno if she had those numbness you felt, but said there is no pain right. Doesn't seem to us she has pain, else she should be crying sharply.

[dcmiki]

Yes, I can walk ok. With the remaining lipoma, it just needs monitoring as it will probably keep growing slowly. He made space by increasing the dural surface layer by using a dural graft to give it room. I'll have my first follow up MRI in Oct 2015. He said it is slow growing and doesn't expect much change from now til then. How old is your daughter? She sounds very young. What a shame. The numbness and tingling is not painful. The only pain I get is slight backache from the surgery site itself after having had a laminectomy.I can't figure out how to upload a photo of my MRI. If you can go to djohnston05blog.wordpress.com/ There is an image of the size and location of mine.

[kazamy1]

I too have a lipoma on my spinal cord. I was diagnosed while in college some 30 years ago after experiencing terrible muscle spasms in my lower back from the tumor having no where to grow which caused pressure on the nerves in the spinal cord and hence the muscle spasms. I have had two surgeries, four years apart, to reduce the lipoma. The neurosurgeon also made space using the graft technique discussed in previous comment. The good news is that your daughter has a very good chance of living a "normal" life providing the tumors growth is controlled with diet and monitoring.

I still have muscle spasms at times, but for the most part I'm doing well. I was a very active guy in my younger years. I use to race motorcross and loved to jog to keep in shape. The neurosurgeon told me that I would not be able to do either one after the initial surgery. I did stop racing due to the obvious reason that my spine was not protected as it once was but I was able to resume some jogging eventually. It also restricted me in what career choices I had, which may or may not be an issue for some people. However, I've alway been a physically active guy and enjoy working with my hands and doing physical type activities so I was not able to follow my father footsteps on the fire department as I aspired to do. But I digress.

During the second surgery I did experience some nerve damage that caused some of my lower back to experience loss of feeling but other than that I've been well.

[Dcmiki_]

If anyone else is still monitoring this thread, there is a facebook group called Spinal Cord Tumor Association (SCTA). It is a large group, there are a few of us with Spinal Lipomas in the group.  There are alot of members who share their stories, advice and general humour regarding symptoms, surgeries and life with a spinal tumour.  Hope everyone is doing well. I still have a lot of deficits, but it's manageable. Happy New Year.