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Old 04-16-2012, 08:39 PM   #1
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Join Date: Apr 2012
Location: Baton Rouge, Louisiana
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captcire HB User
Unhappy Chronic pain

I am 42 y/o and have NF 1. I was diagnosed with NF in 1979 when very little was known of the disease much less the treatment of it. Until 1998, I had no problems except for issues with my attention span and mild learning disorders. I have had several surgeries on my back and neck to remove the tumors from my spinal chord. I live in constant pain due to the tumors in my lumbar spine that they were unable to remove because it would have taken mobility from my legs. I now have neuropathy and neuritis in my right leg which has me disabled. Every neuro doctor I have seen has told me that there is no surgery they can do for me that they can difinitively say will help me, and all they can do is treat the symptoms AKA pain pills. Has anyone else found anything that works besides pain pills? I don't mind taking the medications but I have been on them for over 7 years and I am building a tolorance to them making me need to take them rather often. Please help me. I have several Laminectomies on my spine which adds to the pain, and no OTC meds or herbal treatments work at all. I'd appriciate any help anyone can give.

 
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Old 04-22-2012, 05:05 PM   #2
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Join Date: Jan 2005
Location: St Cloud, MN
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Chronic pain

Sorry for the delay. I don't visit this thread very often.

A couple of years ago I visited a surgeon after the pains were getting worse in my hand. Thankfully then the pain was primarily in one location, and erratic pains in a secondary. The tumors were serious risk to operate on, and as you know, there was a good chance they could grow back.

The solution was interesting, and the NF specialist I saw later had never heard of doing this. The script was for lidoderm patch to be applied tot he pain area for one week (12 on/12 off) and then use a lotion solution for pain in others.

This is where it gets interesting. The lotion the pharmacy mixed was of lidoderm and gabapentin (seizure med!). From what I've been told, the gabapentin "retrains" the nerves to help with the pain. It's been 2 or 3 years since I did that, and the pain is starting to come back (horrible week last week).

I'm going to call the doc and see if they can reissue the lotion to see if that will work, or if I may need to take a plunge. Not wanting to have my hand operated on after just having a few operations the last few months.

--Travis

 
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