Lipoma Support group

[debs]

Hi - have been reading through the posts on lipomas and am struck at how many people feel as I do and face the same medical challenges a lipoma spinal cord tumor can cause. I wondered if anyone in the area of southwestern Florida would like to meet? I know I could really use some face-to-face support from people who know what this is likely. It's pretty lonely dealing with it alone. My tumor extends from C3 - T11. I'm facing surgery again this year (after decompression in 2011) as the tumor has now grown into my chest cavity. Hoping that there's someone else out there who might want to meet up?

[lw]

Hi Debs,

I thought I'd drop by and say hello as my SCT also extends into my chest cavity (left lung and aorta). I have been monitored with annual MRIs for the last 5 years since my spinal surgery and have now been referred to a heart hospital. At my last appointment on Friday I was informed that the chest surgery would involve removing another rib, deflating my left lung and cutting into my heart valve. I really hope it does not come to this. In fact I've decided to refuse surgery at least until/if the tumour starts to interfere with the function of my organs. Is that what's happened in your situation? There doesn't seem to be many SCT patients in this 'double bubble' predicament and it's a worry. Unfortunately I'm in England so I can't meet up with you - hopefully somebody a bit nearer will come on soon.

Leah

[Leigh]

Hello all, my daughter was diagnosed with a lipoma on her spinal cord in her lower lumbar region in 2011. It was found because she was having bladder and bowel problems. She underwent surgery to untether her spinal cord. She recovered from the surgery and her bladder/bowels issues went away. Then less then a year later, she started falling, and lost feeling in her feet. She had shooting pains from her back to her knees. So she underwent another un-tethering surgery. She was once again improved, and regained feeling in her feet, had relief from pain. This was only short-lived though. Less then a year, she was having the same symptoms, but with much more pain. Surgery again, but this time it did not help relieve the pain. Now, the pain is so severe, she can not stand for more than a few minutes. She is also losing sensation in her legs, buttocks, and feet. She is also having difficulties urinating. The lipoma is continuing to grow. The neurosurgeon has told us, the only option is to be more aggressive with the lipoma this time. The risk is very high that she will have nerve damage, and lose control of her bladder among other problems. She is merely a teenager, that wants to live without pain or even less debilitating pain. She is having surgery this coming week. I pray this time takes away the pain.

[lw]

Hi Leigh,

I've just seen your post and thought I'd come in to wish you and your daughter the best of luck with her surgery. She has been through so much at such a young age and certainly deserves (at the very least) a life without pain. Hopefully this time around the operation will be more successful and help to achieve this. You say they have un-tethered her cord in the past, but it is not possible to excise or re-sect the tumour?

Thinking of you,

Leah

[mary jane]

Hello - I just googled this and found this. Long story as short as possible: I was diagnosed with BOOP in 2004. In 2008 I was hospitalized for my BOOP (lung condition) and while doing a PET Scan a lipoma was discovered unrelated to my BOOP. I was in the hospital for 28 days an on heavy Diloted and do not recall being told I had any issue. My doctor went on vacation for a month so switched to another doctor and he had no knowledge of this tumor. So here it is - 2014 and I am in a bad divorce so I am gathering medical records trying to justify my alimony and I decided to get a 2nd opinion by my doctor that hospitalized me back in 2008. I've had left back flank pain for years that has been treated with prednisone. Anyway he asked me about my biopsy. I said, "my lung biopsy?" and he said no - your "spine biopsy"? I was clueless as to what he was referring. He told me my 2008 pet scan results and said I had a tumor. I had no idea I had this thing growing in me for years without a biopsy! He said he referred me at the time to a spine specialist. I was under so much medication I don't remember any of this. So I guess my lipoma is located on my T11 vertebrae. And I didn't know it was there! Anyway I have an MRI scheduled next week and I am very nervous given the pain in my back.

[dcmiki]

Hello all, am new here and so glad I found a place to share experiences with Spinal Cord Lipomas (they are as rare as hen's teeth!). I notice some posts are a few months old... How are you all doing now (July 2014)? I'm 43, from Perth, Australia. I'm scheduled for surgery for an Intradural Lipoma T7-T12 on August 13th 2014. Would appreciate any experiences from anyone who has already undergone this type of surgery.