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lipomas
Jun 16, 2010 0:02:21 GMT -6
Post by auntielisa on Jun 16, 2010 0:02:21 GMT -6
My name Lisa, I'm 46 years old. I was diagnosed with a C-3-C5 intramdulliary lipoma in 2001. I also have Cerebral Palsy, all my life I have had progressive neurological problems, since progression is not common with CP, looking back on it now, it was probably the tumor. I also developed severe scoliosis as a child. Of course, there were no MRI's in the '70's, so the tumor wasn't diagnosed until I became incontient 10 years ago. The tumor could not be totally removed so it was "debulked". Within the past year or so, I have developed more problems with pain- particularly ear pain and headaches. Has anyone else experienced this?
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lipomas
Jun 28, 2011 4:59:57 GMT -6
Post by mladen on Jun 28, 2011 4:59:57 GMT -6
I am from Bosnia and Herzegovina Mladen Micic, Serbian Republic, municipalities bijeljina.1997 I first had surgery in Belgrade in the emergency center of the spinal cord tumor in the work of C1-C7 After a year I again had an operation and REMAINED now paralyzed in all 4 EKSTREMITETA.ODNOSNO moves in a wheelchair. I'm in the same condition but I have a pain in the chest and massaged some alcohol when the pain a little longer and then again all the pain in the hands tako.imam and without sensation leg and ruku.molim if anyone knows some pills for this disease for the pain, otherwise use lioresal25mg, lorazepam2, 5mg, ibobrofen, I pentrakil.1960 godište.ako who can give me some recommendations. thank in advance
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lipomas
Jul 16, 2011 20:25:34 GMT -6
Post by Mladen on Jul 16, 2011 20:25:34 GMT -6
[glow=red,2,300][/glow] I am from Bosnia and Herzegovina Mladen Micic, Serbian Republic, municipalities bijeljina.1997 I first had surgery in Belgrade in the emergency center of the spinal cord tumor in the work of C1-C7 After a year I again had an operation and REMAINED now paralyzed in all 4 EKSTREMITETA.ODNOSNO moves in a wheelchair. I'm in the same condition but I have a pain in the chest and massaged some alcohol when the pain a little longer and then again all the pain in the hands tako.imam and without sensation leg and ruku.molim if anyone knows some pills for this disease for the pain, otherwise use lioresal25mg, lorazepam2, 5mg, ibobrofen, I pentrakil.1960 godište.ako who can give me some recommendations. thank in advance
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lipomas
Sept 15, 2011 11:00:18 GMT -6
Post by Nicola on Sept 15, 2011 11:00:18 GMT -6
Hi, I was born with spinal lipomas, only really just found out what it means, when i was younger i was always told it was a birth mark, i could only sit up for half an hour at a time before needing to lay down until the pain went away. I had an opperation aged 9, which went well and was told i was fine and didn't need to attend appointments at the hospital anymore and was discharged at age 14, i didn't have any trouble sitting up/walking/running. Now aged 22 have been getting terrible headaches which have gotten worse since the last 3 years, slight back pain, and shooting pains down the back of my legs. has anyone heard of them coming back once removed? or any of the symptoms i've mentioned. you help is appreciated. Thanks
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lipomas
Nov 13, 2011 11:40:10 GMT -6
Post by michele on Nov 13, 2011 11:40:10 GMT -6
Nichola, Cord Lipomas very often do come back! Your back pain & in particular the shooting pain down your legs is of concern. Get a nerological or neurosurgical consult with an MRI ASAP! Time + Tumor = Squashed Nerve Cells! After you set up your appt. get educated about your tumor by requesting a copies of ALL your associated medical records, and using the web to make sense of the medical jargon. Good Luck!
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lipomas
Dec 5, 2011 22:14:26 GMT -6
Post by Deborah on Dec 5, 2011 22:14:26 GMT -6
New here - diagnosed this summer with Cobb Syndrome. Laminectomy of C5-T6 angiolipoma. Nichola - my symptoms were similar to your's AND I have a large birthmark (port wine stain) across my back. Ask your doctor about Cobb Syndrome - maybe related? I'm told these tumors can come back, as Michele said. Docs warned me that if symptoms worsen to go back right away. I think you should see your NS, if you haven't already. Best of luck!
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james 23 lamina t5t8
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Post by james 23 lamina t5t8 on Apr 1, 2012 7:35:19 GMT -6
any suggestion on these questions: 1.is lipoma a very harmful tumor.?
2.does it return after surgery ?
3.if yes how long does it takes to return?
4.i had cord compression that made me paralyzed before surgery.what are my chances?
5.do u have a chances of walking again if u can move your or wiggle your toes?
6.why is that recovery of legs .one leg inturn to be far stronger than the other?
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lipomas
Apr 14, 2012 23:41:58 GMT -6
Post by Michele B on Apr 14, 2012 23:41:58 GMT -6
Posted by james 23 lamina t5t8 on Apr 1, 2012, 7:35am any suggestion on these questions: 1.is lipoma a very harmful tumor.?
2.does it return after surgery ?
3.if yes how long does it takes to return?
4.i had cord compression that made me paralyzed before surgery.what are my chances?
5.do u have a chances of walking again if u can move your or wiggle your toes?
6.why is that recovery of legs .one leg inturn to be far stronger than the other?
Hello, My name is Michele. I was diagnosed at the age of 13 when I couldn't move my neck real well. I had an operation of my spinal cord lipoma at that time, which would have been the mid 1980's. I came out of it fine, until the symptoms of back pain returned when I was 21. I could still function perfectly at that time, I just tried to continue with life. Then during my 3rd trimester with our 2nd child my leg went tingly and then numb. My balance started to waiver and I started to fall. I went to a top neurologist a the University of MN. Ended up having to be under full anesthesia and fully tubed to have the child as they weren't going to give me an epidural and I needed a c-section. I did not come out of that ok, went home with a walker and started physical therapy. The first number of years was going ok, then about 6 years after the birth, I had to walk with a cane to really manage. Now it's been 8 years and I have been walking with crutches for over a year now. I don't take any medication as it does nothing. I have extreme upper back pain at times, my tumor is in T-2 to T-9. I went to Mayo Clinic in Rochester MN as well about 4 years ago an was told after numerous MRI's that the tumor is all wrapped into my spinal cord and surgery would ultimately paralyze me. I struggle with walking, balance, sitting and standing. I am hoping to try physical therapy again to see if I can regain some muscle in my legs. Now if I fall down, I am almost unable to get up myself. I am under 40 years old with kids and this is not what I asked for. I was told that in no way it is hereditary. I know that this lipoma is not cancerous, and cannot be radiated or have chemotherapy. I've asked if the tumor can be dyed so they can see it to remove it, but was told no. They wanted me to lose weight in hopes that the tumor would shrink. I lost significant weight and the MRI showed no change. I think that people with these lipomas can be differently affected depending on where in their body their tumor lies. I have some urinary and bowel issues, but it's not incontinance at this point. It's more urgency and the inability to empty which leads to bladder infections. I would love to have the answers and wish I could change this for my kids. I wish you all the best out there who are dealing with this, as I know this is a rare issue.
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lipomas
May 9, 2012 10:00:53 GMT -6
Post by kintenzo on May 9, 2012 10:00:53 GMT -6
I was born with soft tissuemass on my left buttocks had it removed at 6 months old, huge scar and deformity Diagnosed with scolosis in grade school , wore brace for over 1year Curve stayed at steady 12 degrees check again at 18 years old curve at 15 degrees, told to wear a lift in My left school due to legs being different lengths . At age 30 my scolosis was grappling my attention. I had It checked pitot was 22 degrees went to get an MRI for DDD. (lol), found another lipoma at L2 and a teathered cord. Thank god I am short, opted not to do surgery , 2 years later I had left leg Weakness and a slight drop foot. Had a successful surgery at age 33, de teathered my cord tried to remove Lipoma but nerves were wrapped all around it. Had a follow up MRI ,poked the same as previous one Dr said the cord was Definetliy detached , but it could re attach, due to scar tissue. I have had 3 healthy babies. But , today I can complain of left leg weakness once again Going to call neurosurgeon and find out what is next. Is this old age or something new? Re attached? Did anyone have to have two surgeries? He said it is rare and the only way we could tell if it re teathered is by surgery
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Post by Deborah on Jun 2, 2012 1:25:29 GMT -6
I didn't have a tethered cord. My angiolipoma developed from C5-T7 ish, they did laminectomy first from T4-T5, then at Mayo Clinic from bottom of C5-T6. I was told if I'd had a child, I would've died from the pressure on my spinal cord. have permanent damage now. To Michele, I was told that with this type of tumor, it will be nearly impossible to lose weight. I have another massive lipoma running under the skin on my back, too tied into my circulatory system to remove. Docs said it will produce so much cortisol I'll find it impossible to lose weight.
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