Reflex Sympathetic Dystrophy (RSD)

[wonderdog]

Did you not say in a previous thread that you had had the nerve burned? I know someone struggling with making that decision and thought of you. I know someone had it done and was hoping it is you. If so, have you had any positive results? Any negative results? Looking for some answers for her. She is pretty involved and is at the young age of 18...tough decisions for her to make. My knowledge is limited to the discussion my doctor and I had had about it. Thanks. Wonderdog

[brendalee]

I would be most interested in this also. As I have heard it is very contoversial and it may do more harm than good. That is soley based on research. I know of no one who has done this procedure..brenda

[G0J0G0]

Hey Wonderdog and Brenda
Glad to hear from you, I asked Lily (Lorie) how you have been doing, I haven't seen you around in a while. 'Hope things are well things could be better on this side but such is life with RSD.
Wow you have a good memory, no way I could have remembered who had this prodecure and yes I had it on 2/28 and no good to date. The doc said it would take 4-6 weeks to realize the effect and nothing to date. The major side effect is more pain if in-effective and guess what? The people at rsdhope warned me to weigh my options for the possibility of greater pain is a reality and I haven't been the same since. There are a lot of people that have this performed successfully and I felt it worth the risk. The pain has been more intense and more difficult to bring into control. I would ask the doc performing the procedure if they can arrange for you all to talk with another patient having had this done for another opinion. It was my understanding more got relief than not but I am one of the nots, LOL. If you all have talked with anyone at rsdhope they can be of a great assistance, both Karen and Lynne had a relative that lived with RSD (Karen the daughter and Lynne the wife of the same patient) and one of the other moderators (Keith) lives with the monster. My doc did say the next step for me is the SCS and I am hesitant to be cut on in fear of having this spread. Wonderdog have your friend ask for another opinion and explore ALL options and Brenda please do the same. I am not sure that the procedure definitely caused the increase in pain but since this one of the s/effects I speculate this to be the case. I have been aggresive in seeking treatment and have been ready to try most anything but I am beginning to become a bit shy. I have had the trial for the pain pump and realized I would keep looking, the meds didn't work well in my system, sooo I think I will sit and coast for awhile. I will pray that you make the right decision and that Godly favor will accompany your thoughts and desire...
Feel free to write back I will assist you all any way I can and as always Be Blessed, g0j0g0

[wonderdog]

Thanks for the response, Alan! I am greatly appreciative. I had suggested she get a second opinion and she insisted that there was no one. I told her that there is a always someone to whom you can go, but it might entail a drive. She is scared, as is understandable. I felt fairly confident that you had had the procedure and last I had heard, you were still "waiting" for the positives to happen for you. I will direct her to your response so she may read it herself. Thanks again for helping out! "w"

[G0J0G0]

Fantastic. I will look for any response if any, and keep in touch. I have wondered how you have been, asked Lorie about you and posted a generic how are you a couple of weeks back w/out a reply. Have a great day and Be Blessed, g0j0g0

[wonderdog]

Sorry, I never saw the post. I didn't mean to be rude and ignore you. I have not been on the computer as much as my hand is really bothering me a great deal. I do what I HAVE to do and not much else. I had met this young lady of whom I originally spoke, and when she told me the quandry she was in about whether to do or not, I thought of you. I THOUGHT you had had it done and figured asking was worth a shot. I had forgotten about telling her to use rsdhope as a resource so I did just pass that along to her. Again, thanks! How is your wife doing these days? I am sorry that you did not achieve the desired results you were seeking. I came to the conclusion long ago that so much of what is known about this monster and the treatments is really unknown, afterall. Blocks and everything else seem to do little good. Many seem to worsen by treatments offered. Yes, I hurt, but I know what I am dealing with now. It is the unknown that scares me more. I just can't knowingly invite the pain to potentially worsen. You're a braver soul than I! I keep praying that someone, someday will REALLY come up with the answer for us all. It may be a pipedream, but it's all I have right now. Again, thanks for the help and if I need you...I'll holler! "w"

[G0J0G0]

No problem, I will look to hear from you at a later date... Be Blessed, g0j0g0