Neoropathic pain

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Neoropathic pain

Postby charlie57 » Wed May 25, 2011 10:09 am

Hello all,
I am new to this site after a few years used to come here before when I was diagnosed.
In 2005 I had the decompresson surgery. I cant even remember what the chiari measurment was but my syrinx was C2 to T9. My surgery was successful. I have been enjoying life much better!!! However I still constantly deal with odd and random pain. Seems mostly to depend on how active I try to be. Only 35 starting to get little fat, :oops: everytime I try to do much of anything i wind up in pain lasting for days and setting my backwards a little again. My Question for anyone who reads this is does anyone know what the best options are for neuropathic pain? Before I was diagnosed with chiari I had shingles on left side of body for several!! months this and the disorder in itsself have left me with this irreversible damage. What can we do>? Doctors are not very sympathetic for this pain. Thanx in advance. :)
charlie57
 
Posts: 2
Joined: Wed May 25, 2011 9:52 am
Location: Iowa

Re: Neoropathic pain

Postby tennesseewalker » Wed May 25, 2011 12:30 pm

Hi Charlie,

I'm going to give you the same advice I gave my niece yesterday. Her mom is my twin sister and they both also have CM/SM. She called me, desperate for relief. Her PFD was 10 years ago. She has been seeing her NL for 10 years for arm pain. He gave her several different meds at different appts and none helped, so she just didn't take them. She explained how she waits til it's very severe to seek help because she doesn't want to be a whiner. She called her NL and can't get in to see him for 3 months.

My advice to her was to not try to be brave and suck it up. If you don't appear to him to be in pain, then you're not in pain. Cry from the pain if you feel like it. If he gives you a med that doesn't help, call him or see him again. And again, and again... Just voicing your pain does no good. Tell him how your pain has affected your life; I can't cook or do laundry or clean the house. I can't even take care of my 2-year-old; my DH has to take care of her. He will pay attention to those statements, and hopefully will take you more seriously. Good luck.

Mary
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Neoropathic pain

Postby lady 59 » Wed May 25, 2011 5:13 pm

Charlie, just my experience, if the dr. gives you a med & it seems not to be working don't give up right away. Alot of times the drug has to be used for a few days, some even weeks to build up in your system. Also there are alot of different meds to try, my NL has tried probably 6-8 different ones in the last year & a half. Right now I take 2 different ones and get some relief. But sorry nerve pain is one of the worst to treat I believe!
Hang in there,
Mary
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Re: Neoropathic pain

Postby razzle » Thu May 26, 2011 4:24 am

Charlie I am in Iowa too, where are you located . R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Neoropathic pain

Postby charlie57 » Thu May 26, 2011 8:55 am

Hi Roz, I am in Colo Ia. Its about 20 miles east of Ames. Little bitty town. I love it. I have spoke to you before many years ago. Im glad to see your still keeping close in the group. I backed away, fear that I would loose focus on recovery. You had helped me before on here. Your bravery must be unlimited! 8) I had went with Iowa City Clinic had Dr. Menezes for my decompression. He did a great job!! He is a true surgeon though, and seemed to have little advice after. I forget were are you in Iowa?
charlie57
 
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Joined: Wed May 25, 2011 9:52 am
Location: Iowa


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