SFN Journey - Pain Mgmt Doctor Visit

St George 2013 · 10-15-2014, 10:08 AM

Hello everyone. I don't think I've posted a thread in a long time

And this will be a long one to update anyone who would like to read it.

I've been around here though....reading and posting when I thought I could help.

After 4 doctors told me I needed to seek a pain mgmt. doctor (last one being at Emory in Atlanta) I finally got it through my thick skull.

So I searched the internet for places closer to Atl but not actually in Atl. We are south of Atl about 45 minutes. I found a place that is a satellite office for a larger practice to the east of Atl. I like what I read and their Mission Statement said what I wanted to hear. Asked my PCP to refer me so I could get in quicker. Only took a week.

Over the last year I have been to 2 'pain clinics' and was not comfortable with either one so I never went back. I was very pleased with my visit yesterday.

My neurologist of almost a year basically released me in June stating there was nothing else he could offer me. Then on Sept 9th the neuro doctor at Emory went through all the physical things done in a 1st time visit never paying attention to the fact that I was on hydro 10-325. At the end of this 2 hour visit she said "since you are not on narcotics" and I stopped her there. She explained she only treated SFN prior to narcotics. Would have been nice if someone from Emory had asked me that when I made the appointment. Would have saved me and the doctor time and the insurance company $. She offered to refer me to Emory's pain clinic but she understands I don't want to have to drive that far since someone has to take me to the visits.

I had to fill out quite a lot of paperwork for this new pain clinic and I could tell when the doctor came in that he had already read it. He read through the MRI of my neck and back x-rays from last June and took the time to show me (disc from MRI) issues in my neck and explain that even though I don't have problems now I need to know the info in case of future issues. On to the SFN pain. He explained a lot of options, was never pushy about any of them and said he would do whatever he could to get some quality of life back for me. Because I have servere SFN and basically no A and C fibers left in my feet this will be a life long battle to keep the pain down. We discussed:

Pain medications
Sympathetic nerve blocks
What was the most severe pain so we knew where to start (feet)
Spinal Cord Stimulator which he said was my best bet.
Marijuana Trial being performed at their main office (spray in the mouth)

Right now the only thing I take for the SFN is 1800 mg of gabapentin a day (cannot go higher----mental issues start) and hydro 10-325 3 x's a day. (I had tried Lyrica and Cymbalta which did not work for me) This has not been acceptable to me for pain issues and I basically can't do anything. Standing and walking, driving or even riding in a car without my feet up off the floorboard cause the nerves in my feet to go 'crazy'. Cooking, typing etc set my hands off. That puts me in the bed for days.

So I'm starting on the pain patch Butran. He said to use my hydro for breakthrough pain. He said to give the Butran a month to see how it works for me. It's the lowest dose of 5mcg/hr. Put it on last night, had a 'high' for about an hour and then I guess it settled down and I do longer felt 'high'.

My feet are the most painful so we're starting there. I am going to have a sympathetic nerve block on Friday for my left leg/foot.

I've pretty much ruled out the SCS because I've had a rare uterine cancer and am in remission at this point but have to have rechecks with gyn and then onco every 3 months. And because of the neck issue. They say no more MRI's if you have an SCS. I can't take the chance that at some point I would need one and could not have one. I've never been really thrilled with the thought of the SCS being 'scared in' as they say. The only reason I am letting him do the nerve block is because he'll 'knock' me out for it

I'm a chicken when it comes to anything to do with sticking something in my back. Had both my children (34 and 29 now) natural because I was so scared of having an epidural.

Ok....that's it for me. I'm hoping for very positive results of the nerve block and maybe be able to actually 'do' something for a change. Spending 99% of your time at home (not even able to do anything in the yard) is not good physically or mentally.

Thanks everyone and hugs for a pain free day

Debi from Georgia

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