thanks loretta

I hope I can find support here- but I still feel like I have nothing to complain about really. my pain level is low most days.

I have worried about the scs spreading the crps. But my pain dr feels we could get it into remission if we aggressively attack the pain early. I am hopeful. I can only trust my team at this point. I have educated myself as much as I can.

Hi Mell, You have found a great group of caring and understanding people here. I think at times they have probably saved my life. What a way to meet people though, with the common factor being RSD. I just had my SCS trial in Dec. and I am scheduled for permanent implant of Jan 25. I had great success with the trial, and hope you do to. I think that it probably cut my pain by about 50% and I did not have to wear my wrist brace at all. I was also able to cut down on my pain meds for a week, and that was great! It sounds to me like you have a really good doctor who is understanding of what you are enduring. You may feel like you have nothing to complain about, but you need to ave a good support system behind you. You are right about the pain causing depression, I have struggled with the depression and RSD for about 8 years but only was diagnosed with the RSD about 3 years ago. At that time I had already had 8 surgeries and numerous injections into the wrist joint. Since then I have been on a high cocktail of medication and had several nerve block injections. The SCS trial has been the only thing that has really made a dent in my pain. I really wish you success with your trial. Lisa

hi
 

hi mellemmel, hey always nice to find a site where you can be happy and pass it on and be down and pass it on and people are with ya no matter what, i have been on here for a few days only and i can tell which ever we all are everyone is happy for ya and there for you no matter what and thats what we all need, i to feel bad as if im to happy sometimes and maybe people think oh yea she cant be that happy of a person lol, but i try to be a postive influnce, my husband has rsd 3 -4 yrs now he got trapped under his semi truck his hand and was trapped for 20 min blocking off his blood and crushing the nerve, and me i got selected with myasthenia gravis 37 yrs now,, so welcome to a great site im happy i found it as well... linda

If it's being caused by a trapped nerve then there should be a good possibility that a release would result in remission. It's the same with neuroma or other physical problems. But there's a tendency for the swelling of RSD or something associated with RSD to give a sort of "false positive" for nerve entrapment. Operating under these conditions is extremely risky.

If it feels like an entrapment then that's one thing but it sure doesn't sound like one. There are few things RSD hates like on operation and that goes double for the affected limb.

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Hi mellemmel,

Entraped nerves are a tricky area. Mine are in the elbow and did have a Ulnar nerve entrapment which might have caused some neuromas. All I can tell you is be very careful who you allow to do any type of nerve surgery. I'm not going to go into my whole long story but after many surgeries, many RSD procedures including Ketamine I finally go off most of the meds. my arm was back to 90% good functioning but still had this strange relentless pain in the elbow. So a neuroma was mentioned by one of my doctors my surgeon did not agree did not want to do a surgery to try and find something but did it anyway, as my pm doctor stated " I had to beg him to do it". I should of listened to my surgeon when he said NO. And honestly it made the pain worse and 4 years later I'm still searching for an answer of what this pain is. Everyone agrees it's some type of nerve problem but what type and can not been seen on any films.

I have been communicating with a doctor who teaches at John Hopkins and has his own Periphial Nerve Center in MD for about 2 years. But I not ready to jumb into the arms of another surgeon.

Gabbycakes

Thanks Gabbycakes,
It is bad enough when those in contol of our physical well being take risks, think they know it all, want to try something yet don't have to suffer the consequences, and those of us who have yielded to their supposed 'knowledge' and experience(?), sacrifice our days and nights, our minutes and hours, and submit not as much to the Drs as to the constant drive within us to rid ourselves of this that has taken up residence in our bodies and the hope we have of being restored to what we once were. Then to find the results have set us back into worse circumstances or sometimes even worse to have no change at all.

There seems to be redemption of our seemingly wasted sacrifice on some level when we can share our experience with someone else who might benefit from lessons learned on our own journey.

Thank you all on this forum who are willing to share your defeats, failures, attempts at grasping for the golden cure, so that those who come behind you might gain wisdom and insight from your trials.

My own experience was that within days I had more info than I could process after months of searching on my own and coming up with little or nothing of any account. And the knowledge and wisdom here comes with compassion and friendship as an additional balm applied to the wound this RSD has made to our spirit.

Thanks again Gabby, and all for offering a hand up to those who are low.
With hope,
pat e