[dianna]

My left hand burns so this will be quick. But I need help please.

According to my new pain specialist, I have CRPS due to my TOS surgery. He says I am in the early stages. I have burning arm/hand, upper back&neck pain, sweating from chest down(possibly due to hyperhidrosis surgery for profuse facial sweating and redness, sounds pretty huh?)hand weakness and I am unable to do ANY kind of activity without "setting off" the symptoms within 15-30 minutes from the start of the activity. He wants to do the ketamine infusion. I am not really sure I agree with his DX of CRPS, but we are out of options. I do not have severe pain with light touches, such as the feathers seen on video clips, and I do not have swelling or color issues with my skin. What do you think? H owever the burning can be hurt as bad as a
8 or 9 on the pain scale.

Hx: Arm burning and neck pain began in 2004, "Pop" while scanning a patient in neck resulted in Annular tear at C5-C6 with herniation at C6-C7, fusion done May 06. Dx with TOS, but they had to fix neck first to make sure.
Feeling great 6 weeks post op I went back to work as a sonographer. Had sympathectomy for facial sweating and redness, seemed to work. Arm/Hand Symtoms returned within one month of my return to work. Went in for TOS surgery. Felt great for two weeks. Symptoms returned. Only difference, I can hold the hairdryer over my head with out my arm falling down. Negative nerve study and negative carpal tunnel. Last MRI showed buldging above plate in neck at C4.-C5 Age, 38, two small boys, not working, Workers comp rejected. No disability help from uncle sam. BROKE!

Please give me your thoughts, stories, theories, and inspirations(hopefully)

Thanks.

[gigglebabe]

First welcome,.....second, I'd never ever ever have a sympathectomy with RSD, ever...thats like the worst thing to do....read up on this alot...

third....if your early stages, get stellate ganglion blocks asap..read up on them..they can help with remissions in very early stages......


Good luck .. read and research everything, never jump into anything when it comes to RSD.

Debbie

[dianna]

Originally Posted by gigglebabe

First welcome,.....second, I'd never ever ever have a sympathectomy with RSD, ever...thats like the worst thing to do....read up on this alot...

third....if your early stages, get stellate ganglion blocks asap..read up on them..they can help with remissions in very early stages......


Good luck .. read and research everything, never jump into anything when it comes to RSD.

Debbie

I didn't do the sympathectamy for RDS. I did it for hyperhydrosis, however, it may pay a role in my symptoms. Oh, and I did get the blocks already. No help. Thanks for listening, I'm doing all the research I can. Thanks.

[vanityfaire]

hi Dianna, I hear your frustration and concern over this disease. It leaves a person just sitting there in shock when everything was fine previous to the trauma that occurred. I have had RSD now for almost 4 years.

Go the Department of Vocational Rehabilitation in your town. They can help with employment supports and signing up for any programs you might be eligible for. It is a free service and is all about assisting a person to obtain or keep their employment with their disability issues. You don't need a referral just get the initial appointment.

I will be praying for your pain level to be low and that you will find the right treatment. Do get things done in the beginning stages. As I am reading too that that is the best prognosis.

[dianna]

Originally Posted by vanityfaire

hi Dianna, I hear your frustration and concern over this disease. It leaves a person just sitting there in shock when everything was fine previous to the trauma that occurred. I have had RSD now for almost 4 years.

Go the Department of Vocational Rehabilitation in your town. They can help with employment supports and signing up for any programs you might be eligible for. It is a free service and is all about assisting a person to obtain or keep their employment with their disability issues. You don't need a referral just get the initial appointment.

I will be praying for your pain level to be low and that you will find the right treatment. Do get things done in the beginning stages. As I am reading too that that is the best prognosis.

I keep jumping back and forth about the ketamine infusion. Have you done this yet? Do my symptoms sound familiar?

[vanityfaire]

It really does sound like you have it Dianna. The best way that I have had to describe the pain is its like a porcupine, electrical feeling. The burning is just that as if you had been burned. My feet now are red and swell. I have RSD and lymphodema in my left foot.
I do need to keep the medication levels up. I take neurontin 1500mg a day and hydrocodone 750 (4) day.
I tried Methodone and could not do that one, I had slurred speech and not able to get my thoughts out. It wasn't a high either it was like a delay. I felt perfectly fine. Just couldn't talk so not able to work when I was in that state. I also tried cymbalta that did not work for me.
I have had 2 nerve blocks. The first did not work and they went in and did it directly into my leg rather than the spine. That helped a lot.
I am only now hearing about the Kenatine so I didn't realize that was a treatment.
How frutstrating Huh? I almost fear when night comes and the need to try to sleep. The worse time for me.

[wakegirl]

you said your injury occured in 2006 and you dont qualify for s/s disability? did you apply and were rejected or have you yet to appeal. obviously your injury influences your home life, what about your ability to maintain employment. do you have at least a year of full time employment history? if you meet the qualifications, have the physician evidence to support your claim, someone from home who would be willing to say yeah her injury has messed with our lives, then i would say apply. if you have been rejected previously i would find a lawyer in your are who works on a winning percentage scale so you don't have to hand over money you dont have. most of the good s/s disability lawyers have a conseltation period where they look over your case to see if it has potential, and it gives you the opportunity to see if you feel comfortable that they will represent you as you need,
good luck
it took me almost 3 years of no income to get s/s disability coverage

[Desi]

Originally Posted by gigglebabe

First welcome,.....second, I'd never ever ever have a sympathectomy with RSD, ever...thats like the worst thing to do....read up on this alot...

third....if your early stages, get stellate ganglion blocks asap..read up on them..they can help with remissions in very early stages......


Good luck .. read and research everything, never jump into anything when it comes to RSD.

Debbie

Hi! Debbie gave you some great advice. I am having the stellate ganglion blocks, and yes, she told you the truth.. NEVER EVER have a sympathectomy with RSD.. EVER! Great post Deb Get those blocks Now.. I had one put me into remission for 2 weeks and 3 days.. the pain was gone and it felt great. Yes, the block didn't help me this time around again.. but ya knever know when I go and get my next SGB I may go into remission again for a week? month? year?? GET THEM STAT! ok.. off my soap box for now.. LOLand you hang in there, OK?? again, Debbie!~Love, Desi~Love, Desi

[vanityfaire]

HI Debbie, you asked me if I would do the ketamine. I too have just found this site and have had lots of questions. I think I have been in a lot of denial and now must have a reality check. The pain is progressing and I am not sure what is next. I keep very busy working full time, going to school full time and running my own jewelry business online. I also teach behavior disturbed children how to make glass beads on an open torch..I am a lampworker. If I thought that my pain would improve I would do it. I would take the time out of life and just go for it and hope for the best. Living with the pain and the limitations can be very frustrating and you with your small children probably wish you could be playing on the floor and running through the grass. If your life could improve even if it was for a short time. I would do it. But we each have to weigh out our options. I wish I was closer I would help you with the process so you wouldn't have to worry about things. Praying for you sweetie.
Your online buddy..