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Post by Randy on Dec 20, 2014 20:18:52 GMT -6
I just found this site. I am in a panic. I'm 54 and was just diagnosed with a 6mm schwannoma between L2 and L3. The neurologist advises against surgery as I've been told you are usually left with neurologic deficits. While I understand that I'm also not sure I can live the rest of my life on Gabapentin. I have had back and hip pain for a number of years, nothing horrible until last week when suddenly the pain became spasms and was unbearable. Does anyone know if this intense pain will subside or is it permanent? The Gabapentin relieves the pain but I am having trouble functioning on it. Also I'm looking for a neurosurgeon to get an opinion on surgery. I don't care where I have to go I want the best doctor who has the most experience with these spinal schwannoma's - any recommendations would be greatly appreciated. Thanks in advance for any input.
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Post by batman6561 on Jan 1, 2015 22:11:20 GMT -6
Hello from Ohio . My Schwannoma L2_L3 is only 7x7 mm tumor stopped growing but I have other issues like fell on ice a fractured L1 vertebra. I also have Degenerative disc damage l5 4 3 1.I have 3 bulging disc and 1 herniated disc all in lumbar area. That's enough for me. I have fallen a broke my collar bone because of Over Medicated? My meds now from my 4th pain Doctor are 15 mg of an opiate 4 x a day. Used to be on 5 30mg of same opiate a day. That actually helped my pain issues everything except those pains when I sit but mine is not just sciatic but another nerve starting at inner thigh. That one feels wonderful. Sarcasm , I've had shots,burnt nerves, and physical therapy acupuncture, tried just about everything but surgery because of size a number of nerves going thru I'm not even considered. Both Doctors and Insurance companies are in agreement. I agree also because My Sister had back Surgery and She's on Her 4th surgery to remove scare tissue. So I have something wrong from L1 to L5. I await future findings of stem cell research. I'm 53 years old to young to do nothing so I metal detect. I still looking for a replacement metal spine. Ha Ha
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Post by guest from ohio on Jan 7, 2015 9:06:39 GMT -6
10.7 cm sacral schwannoma discovered during ovarian removal surgery (they thought it was right ovary). Anyone else have this?
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Post by Irv on Jan 7, 2015 18:19:27 GMT -6
I just found this site. I am in a panic. I'm 54 and was just diagnosed with a 6mm schwannoma between L2 and L3. The neurologist advises against surgery as I've been told you are usually left with neurologic deficits. While I understand that I'm also not sure I can live the rest of my life on Gabapentin. I have had back and hip pain for a number of years, nothing horrible until last week when suddenly the pain became spasms and was unbearable. Does anyone know if this intense pain will subside or is it permanent? The Gabapentin relieves the pain but I am having trouble functioning on it. Also I'm looking for a neurosurgeon to get an opinion on surgery. I don't care where I have to go I want the best doctor who has the most experience with these spinal schwannoma's - any recommendations would be greatly appreciated. Thanks in advance for any input.
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Post by irv on Jan 7, 2015 18:36:45 GMT -6
Sorry first message I was trying to respond to your post. I was diagnosed with tumor at L3-L4. My right leg was in extreme pian, constantly. No medication seemed to help. I am 6 weeks post op. The tumor was removed and I do not have known nerve damage. My leg pain was gone as soon as I woke up from the surgery. My pian only got worse. It never subsided. I was told by my doctor ,if I didn't have the tumor removed it continue to grow. The tumor could effect other nerves, and would be more difficult to remove. My surgery went very well. I hardly had any pian. In fact I only had to take medication for the time I was in the hospital. I was off the pain killers once . I got home.
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Post by irv on Jan 7, 2015 18:46:41 GMT -6
Along with removal of the tumor ,I had a fusion at L3-L4.
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Post by Carmen on Jan 23, 2015 2:21:31 GMT -6
I was FINALLY diagnosed with a schwannoma at my L3/L4, after suffering agonizing pain for more than a year and a half. The pain was not only in my back but in/down my legs as well. I couldn't sleep, had difficulty walking and my body would literally lock up. Sometimes I couldn't even raise my leg up to get into the tub to take a shower. I had trouble getting in/out of cars..once I was trapped in a cab because I physically could not move to get out. Needless to say I went to the ER by ambulance countless times only to be given the diagnosis of sciatica. I got so frustrated with my PCP that I went out of network to spine specialist but they would just give me injections and pain pills (they did nothing) One doctor even suggested I go see my OB/GYN because there was nothing wrong with my spine. Eventually a blood clot cut off my airway and I collapsed on the sidewalk outside my home. Test showed extensive clots in both lungs and both legs. Next, they did an MRI and discovered the tumor. I should have been upset by hearing I had a spinal cord tumor but it was one of my best days because they finally found out what it was. I couldn't have the surgery until the clots were gone so I ended by getting shots in my stomach to dissolve them and I had to have blood transfusions. My surgeon did the operation on a Sunday and was able to completely remove the very large tumor. I cried afterwards because that horrible pain was finally gone. I wish that was the end of all my drama but no.. I had spinal headaches due to CFS leaking and three different bacterial infections including meningitis, and nerve damage. I had to go into a rehab and then physical therapy would come to my home. Nursing would come over to draw my blood twice a week and I did antibiotic iv's several times a day for 6-8 weeks. I am doing really good now and I just feel so blessed to have gotten through it all. My prayers are with all of you that are suffering and I pray you get relief soon. Don't give up!!
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Post by Carmen on Jan 24, 2015 1:42:53 GMT -6
I forgot to add that my tumor was an Intradural Intramedullary schwannoma. My surgery was done in Northern Virginia. My surgeon was wonderful and did an awesome job. I am happily living my life now pain free and making the most out of each day. My email is giddiup101@yahoo.com. Please feel free to contact me if I can help in anyway.
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Post by Dee on Feb 2, 2015 20:27:12 GMT -6
Hi I had a schwanoma removed in Augus, ended up with horners syndrome bc of it, but now I have a sheath tumor like a schwanoma just in my neck deep in the colar bone area... Anyone know if there is an underlying disease to keep causing growths?
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Post by Blessed on Feb 4, 2015 17:53:20 GMT -6
Hi, I had a large schwannoma removed from my left arm in 2008, this left me with nerve damage to my left arm. I knew very little about the condition at the time and thought it was an isolated schwannoma. In 2013 I lost use of my left leg and arm v suddenly, investigations revealed I had a schwannoma in my spinal chord at T5. I was lucky I had a wonderful NS and. The operation was v successful leaving me with nerve damage to my right arm and episodes of numbness but this was far better than the expected results. My dilemma now is that I have been diagnosed with schwannoma in the neck on the left side, the NSA doesn't want to remove it as he fears I could lose use of my left arm. I also have three large S in my left hand these are causing lots of problems as I am left handed, again the NS is cautious of operating because of the risk of losing the use of my hand. I would be interested to hear if anyone has had extensive hand surgery and the results. I would avoid surgery if at all possible but as I am left handed I am in a great deal of pain and discomfort. I am very lucky that I am under the care of the NF research faculty in Manchester UK I have been very lucky to have two exceptional surgeons conduct my operations all courtesy of the NHS. Any advice on pain management would be appreciated.
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