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lipomas
Sept 10, 2012 11:30:51 GMT -6
Post by andsoimsam on Sept 10, 2012 11:30:51 GMT -6
Hi I am Susan, I used to come here years ago, but then I got so discouraged and drugged that I quit trying to find help or support. I honestly just wanted to die. These Lipomas are horrid! they destroy the spinal cord, then isolate the victim because there is not one single person in their world that can understand what is going on..not even the doctors! Oh yea, my lipoma is T6 to T 9. I was told my future was a slow deterioration until I was just helpless. Well I felt helpless just hearing that and I even believed it for awhile. I let a pain management clinic make lots of money keeping me drugged for a few years until I realized I was not only still in pain but in WORSE pain??? There were days I couldn't even get out of bed. To make this a really short story I did not want to follow the clinics regime anymore so I was labeled as depressed and given more medicine and when I refused to follow their direction I was released as patient and went cold turkey off all meds. You don't want to know about this in between time. It took me 3 months to find a pain management clinic that would take me, and treat me without loading me down with drugs. God sent me an angel. This doctor knew just the right person to send me to for some PT that I should have had all along and came up with just the right amount of meds { no narcotics} for my central nerve pain. I was on 1600mg of nuerontin she got me down to 900. She put me on a better muscle relaxer. I am here to tell you there is hope. 5 years ago I could not even stand up straight. I was begging my husband to help me die. I have recovered feeling just recently in my left foot and leg!!!!!! I am so amazed. I am still in pain every day, but it is controllable. walking. PT There is hope, don't give up, 5 years ago I was crawling to my bathroom, falling asleep talking to someone. When someone ask me how I am now, I say I am getting better every day. Even my bad days are better now . Don't believe everything they say, keep looking for yourself, just don't give up. Susan Lipoma T6-T9 surgery 5/2001
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lipomas
Sept 19, 2012 0:25:10 GMT -6
Post by tinyhopeful on Sept 19, 2012 0:25:10 GMT -6
I'm Caroline and was born with my spinal lipoma, removed when I was too young to remember. When I was around 23 I suddenly had foot drop which was supposedly due to a tethered spinal cord. I'm not sure why I keep doubting that although I suppose that it's because it was sudden not gradual. Anyways, reading through all these posts I started wondering if anyone has had any experience with Enzyme Therapy? I just started taking enzymes in hopes that it would break down the scar tissue and the lipoma but I'd love to know if it worked for anyone. I feel like I need something to lift my hope. Anyways, thanks in advance!
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lipomas
Oct 2, 2012 11:42:14 GMT -6
Post by andsoimsam on Oct 2, 2012 11:42:14 GMT -6
what is enzyme therapy and who is giving it to you?
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prabu
New Member
Posts: 2
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Post by prabu on Oct 8, 2012 7:58:27 GMT -6
There is a neuropathy hospital here in india which follows a traditional method to dissolve the tumour without operating Though I'm a victim of allopathic treatment , I was operated for spinal lipoma on oct' 10 and after that I'm not able to walk.they left some fatty tumour within, because it seems very danger to go further deep inside vertebra. I have dissolved the remaining tumour partially by this treatment .the tumour came out dissolved in my urine , which was like colour of milk.so anyone opting for operation , try this once. Definitely fruitful . You don't loose your walking..think twice before operating..mailboxofprabu@gmail.com
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lipomas
Aug 8, 2013 14:36:39 GMT -6
via mobile
Post by Cydney on Aug 8, 2013 14:36:39 GMT -6
I have had several surgeries. I have neurofibromatosis 2...which is a lack of a protein that prevents tumors. I am an RN...but have been unable to work for 13 yrs. I had brain surgery in 2000 for an acoustic neuroma. Lost my hearing and have facial paralysis and trigeminal neuralgia on right side. Then I had C 4-7 lamanectomies because of ruptures. They then had to fuse them in a later surgery. I continued to have back pain so after another MRI...they found a very large intermedulary lipoma on T 3-7. I had surgery, they could remove 40% of the tumor and the only residual effects I had was severe pain between my shoulder blades. I have been on pain meds since then. All this happened between 2000-2001. My NS is great. I have brain, cervical, and thoracic MRI'S yearly. I have another brain tumor now, an astrocytoma, but no growth in years, thank God. I have been very lucky. Hearing loss in one ear, facial paralysis, pain. It could be so much worse. But NS told me that pain would continue to worsen throughout my life. I'm ok with that as long as I can walk, have bladder and bowel control, and my life continues. Pain can be managed. Its the nerve pain that cannot be medicated, and thats rough. But I still feel incredibly blessed that I'm as well as I am. I also have seizures from the brain tumors. I will deal with this for the rest of my life...so I'm trying to deal. I was 34 when this started 13 yrs ago. So I'm hanging in there. I miss work most of all, but my pain level after standing too long makes work impossible. I am praying for you all.
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lipomas
Aug 14, 2013 23:58:49 GMT -6
Post by lavenderrose1984 on Aug 14, 2013 23:58:49 GMT -6
Hello, My name is Hillary. I had a lipoma tumor that compressed my spinal chord in the thoracic region in 2004. Before the surgery I was having symptoms of spine compression (tingling feet, gradual muscle atrophy, and incontinence). I had surgery in March of 2004 to remove the softball-sized tumor. I was asymptomatic for nine years. Now the symptoms are coming back. My feet feel like I'm stepping on pins and needles, I have an overactive bladder, and The spot in my back where the tumor was removed constantly throbs. My question is, are there others out there who have had a lipoma of the spine removed? If so, how many had a reoccurrence of the tumor? I am scheduled to see my doctor in three weeks to address the problem.
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lipomas
Sept 15, 2013 16:45:10 GMT -6
Post by julio60 on Sept 15, 2013 16:45:10 GMT -6
To everyone who is suffering from Lipomas my heart goes out to you. My daughter was diagnosed with a lipoma in Octber of 2000. She began falling down. On Monday she saw the doctor. Tuesday and Wednesday she had MRIs on Thursday she saw her DR. On Friday she saw the Neurosurgeon and on Monday she had a 9 hour surgery. Her tumor was coming out of her spin and going down and wrapping again around her spinal chord. She was in the hospital for surgery and therapy. She came home the day before Thanksgiving in a wheelchair and a diaper. Thank god she was able to get her bodily functions back but she had to learn how to crawl, stand up and finally walk. She does have nunbness on some parts of her body. Now 2013 she just got diagnosed with two tumors. One T4-Tp and wider and L1-L3. She is walking with a cane and is having problems with her bladder. She is devasted because shes 39 years old and worried about losing her legs. She's always been afraid of putting a boyfriend through this and she knows she will never be able to have a child. She will see the Neurosurgeon again. To all of you. Hang in there and think positive.
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lipomas
Sept 15, 2013 16:50:09 GMT -6
Post by julio60 on Sept 15, 2013 16:50:09 GMT -6
I forgot to tell you that the first time she had surgery, only 70% was taken out.30% was left. The doctor was afraid she would never walk again but her tumor grew back.
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lipomas
Feb 25, 2014 19:35:34 GMT -6
Post by CosmoChef on Feb 25, 2014 19:35:34 GMT -6
I'm seeking information. I wish I could reply to one of your stories but I'm in a place where I have not been diagnosed yet, I don't have any insurance, I'm a full time student(studying cosmetology), I have a degree in culinary(chef) as well as a mom of two children. So you see, I'm on my feet all the time! Question: I have a lump on my back(middle), it's about a quarter size, it hurts to sit for longer than 20mins.,and it also hurts when I stand for too long, it causes pinching and a tingling feeling down my left middle finger, and I feel a throbbing or numbness in the area. I'm thinking it's a lipoma or could it be something worse? any info will help, thanks
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lipomas
Jul 20, 2014 19:44:43 GMT -6
Post by dcmiki on Jul 20, 2014 19:44:43 GMT -6
Hello, How are you all doing now (July 2014)? I'm due for surgery for T7-T12 Intradural Lipoma next month. Would love some insights and experiences. Thanks
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