Any experience with a pain management clinic?

[oops1990]

Hello all. I have Chiari 1 and Syringomyelia. After 4 surgeries including a shunt in my thoracic spinal cord, things were looking up and my syrinx was shrinking. I had a good year from about July 2014 - August 2015. I had returned to work and was feeling pretty good. In early August I started getting back pain again :( Had an MRI and my syrinx is growing again. My NS is afraid to do any more surgery at this point unless I start to have a serious decline in quality of life, so they have referred me to pain management. I've been waiting since August for this appointment and I finally get to see pain management this week. I'm just wondering if anyone has had any success with pain management. I'm trying to avoid more surgery for obvious reasons, but I've had to quit my job (again...) and I'm tired of being in constant, ever-changing (stabbing, tingling, itching, burning and general aching) pain. I can't enjoy taking a walk without back pain flaring up, I can't sit in the same position or in certain chairs for long, some nights I'm so uncomfortable I barely get an hour or two of sleep, and I can't even cook dinner or wash dishes comfortably half of the time. I've tried things like Icy Hot, lidocaine creams, OTC meds such as Tylenol, Ibuprofen and Excedrin, heat packs and a massage pad but nothing really helps. I feel like the stress from being in pain just makes the pain worse some days! Sorry for the long rant, but I know if anyone would understand it would be the lovely people in this group. I see pain management on the 23rd, so if anyone has any advice or experience to share I would greatly appreciate it :)

[gjjl]

Selma you mentioned the patch?? I will have surgery in 4 days..  what should I know about the patch???? Thank you!!!

[selmaS]

  Sometimes it can be the patch causing us issues....so do call and ask which type was used.....

[selmaS]

  Retail , even part time can be a bit much at times...especially depending on which department you work in...housewares has heavy items, and clothing is not light when you have a full dressing room to clean up.....I worked retail for may yrs and am well aware it can be more then just standing behind a register. And depending on how soon post op you went back it could have been too much too soon....as I was told to not even bend over to pick up lint....

You said you had a dura plasty....do you know type of patch was used?

[oops1990]

I have no idea on the patch. I keep meaning to ask for copies of my surgical records, mostly out of curiosity.

[selmaS]

  Hi may I ask what 4 surgeries....decompression and a shunt placement and what else?

When was your last surgery?.....

What type of job and duties did you have?

Were ALL related conditions ruled out ? I know you had a syrinx, but did they check for other conditions too?

I did not go to pain management, but I do know it can take time for many of us to see benefits from this surgery.....it can take time and sometimes we "rush" back to work and our "old" lives and it can cause set backs.....

I am 6.5 yrs post op and this is the best I have felt since long b4 my DX.....

[oops1990]

The other 2 surgeries involved my cerebellar tonsils. During one they cauterized them and during the other they resected the tonsils and did a duraplasty. My job was in retail, so mostly standing behind a register, bagging items, etc. And I was only working about 20 hours a week, which is way less than I was doing before. I wasn't able to find a job with my business degree at the time because I could only work part-time and have no business experience :(

My last surgery was in June 2014 and I didn't even go back to work until late December 2014. I've brought up other conditions to my NS but he doesn't seem to think I have any of them. As it is, my NS is an hour away from my house, I have no insurance and I only have disability income right now, so finding another specialist isn't an option. My first surgery was December 2012 and it just seems like I feel better for a while, then get worse again after each surgery.