lipomas

[J]

shout out for the lipoma folks... any one else out there besides me?! hellooooo? ;D

[joiful1]

My tumor was discovered in May of 1996 after six plus months of mis-diagnosis.

I was told it would return and it has; the first one had wrapped around the spinal column so when the second one was confirmed the neurosurgeon opted to leave it alone because she had removed so much bone from the spine to excise the first tumor.

I can only stand w/o pain for a brief period of time. Once the pain becomes it is followed by weakness, more pain and further deterioration.

How about you? Any suggestions? Thanks in advance.

Regards,

Joi

[celly]

I dont know much about mine,my doctor was very vague,i only know it's benign and sumwhere around my 5th and 4th vert in my lumbar,but I also have osteoarthritis pretty bad,multiple neuropathies going on and was diagnosed recently with Trigeminal Neuralgia and Glossophryngeal Neuralgia......all this news brought to me since December of '07.
So i'm a bit bewildered at the moment and noone seems to want to check my upper spine which im having problems with also,as how I have NO insurance,I know I have spinal stenosis that is rapidly progressing caausing me partial paralysis some days,nor can I stand for longer than 45 mins MAX.....Soooooooooo I hope you are doing well at this moment!

[stacy]

Hi,
I would like to hear from anyone that has lipoma tumors. I had surgery in '99 in NYC by Dr. Epstein. He could only remove about 40% of it as the rest is entangled with nerves and wrapped around the cord. I also have lipoma outside the spine and it has been suctioned out twice and really needs to be done again. Just would like to hear from anyone with the same kind of tumor's. They seem to be so rare among the types of spinal tumors.
Thanks,
Stacy
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[e-mail]

'76 scoliosis surgery.'82 myelogram showed spinal lipoma tumor. '99 multilevel laminectomies T2-L2 for partial resection of spinal lipoma tumor(Dr.Fred Epstein).Lipoma remains from T12-L3. Tethered spinal cord and arachnoiditis. Syrinx @ C7

[Kenny]

Hey! My name is Kenny. My story is on the "people page" here. But I had a T-8 to L-1 Intramedullary Lipoma. Had post op paralysis of the lower Extremeties. Took me almost 4 years but I have recovered about 80%. I walk fine w/ no assistance, but cannot run nor do I have much feeling anymore below the waste. I'm glad I found more lipoma people! Thought I was the only one!

[debbie12]

Hi, my son was born with a Lipoma Intermedullary Spinal Cord Tumor C1-C7. He is now 25 years old. He has had two surgeries on this tumor. One at 2 months old in Syracuse, NY and then again when he was 9 years old in NY University Hosp. (Dr. Epstein). He had quite a bit of mobility until 2005. He is now quadraplegic and on a respirator. We continuted to have him evaluated by a neurosurgeon, the doctor always said there was no change in the MRIs from the last one taken. Evidently, there has to have been some change, maybe not seen by the eye on the MRI. We are currently looking for a neurosurgeon who maybe can help. Any suggestions?

[tc]

Dear Debbie,
Please contact Dr. Jallo at Johns Hopkins. Dr. Jallo was trained by Dr. Epstein. Dr. Jallo is a very nice man. He will look at your son's MRIs for free. Many people in this group have had their surgery done by Dr. Jallo. (Several people had to travel across the US to have their surgery done by him.) I've visited him for a consultation, but I haven't had surgery yet.

Here's the contact info for Dr. Jallo (current as of June 2008):

George Jallo, MD
Division of Pediatric Neurosurgery
Johns Hopkins Hospital
600 North Wolfe Street, Harvey 811
Baltimore, MD 21287
Tel [phone]
Fax [phone]
Referral line: [phone]

[e-mail]
www.hopkinsneuro.org/peds_surgery/

[jc]

Thank you so much. I will contact him immediately. I actually just came across his name this afternoon while researching the internet for a surgeon. We are very grateful. Thank you.

[Kenny33]

Thought I'd re-post since when I did it the first time I was signed in as a guest:

My name Is Kenny. I was diagnosed with a Intramedullary Spinal Cord Lipoma (T-8 to L-1) in July of '03. Surgery Sept '03. Paralysis from the waist-down after surgery and took me over 3 years to recover to the point of no assistance. I currently walk fine, cannot run, have no feeling in my right leg, limited in my left and have some balance issues. Digestive system has come to a screetching hault just about ! haha. Surgery performed at UConn Health Center (Farmington, CT) Spent 2 months in Gaylord Hospital (Wallingford,CT).

God Bless

[marshall starkey]

My name is marshall and i was diagnosed with an intramadullary lipoma between t5 and t7 in november of 2003.Dr Hatem Abdu did my surgery and i was told it was wrapped around the cord so he could not get the whole thing.I was in therapy for about 6 months to learn to walk again,but now i can pretty much do anything i want.Thank god i guess i was one of the lucky ones.