Hi, Thank you for responding. How long have you had rsd? What helped you go into remission? Are your spasms without pain also? Hope not to many ?s for you. You are giving more hope when I need it!

fondly'
debbie

Hi Debbie--
I have RSD/CRPS in my abdomen (my CRPS is a result of trauma to my nerves during abdominal/pelvic surgery) and just had my 3rd set of Botox injections done yesterday.

For me, Botox has been a Godsend. My neurologist first suggested it October, when the diagnosis of CRPS came to his mind-- after I'd had had 2 unsucessful Lidiocaine/cortisone injections into my abdomen for "post op inscion pain" done by my Ob/gyn. Being that I was pretty miserable-- having "hot", burning, nerve pain and other CRPS symptoms, and not getting much relief from anything else (I am Neurontin for another neuro condition, which does help some with the CRPS pain, but has a lot of side effects at high doses), I was willing to try it. So, and this is what I would recommend to anyone thinking of Botox, before I had it done my neurologist had me "draw" on my tummy during where it hurt the most and "how" (as in little dots for stabbing pain, streak marks for radiating pain, etc); then take a few pictures of it and bring it with me to when I was having it done. Sounds kinda strange to draw on yourself, BUT, by marking and pin pointing the pain locations gave us the best places to do the injections, how much to use, etc. Anyway, I honestly wasnt expecting much from Botox, but, much to my suprise-- and delight, within a week my main was considerably better and I was able to walk around and do normal, life things easier and without as much pain. It didn't take things away completely-- but it was helpful.

My first set of injections lasted about 7-8 weeks; my 2nd set didnt work as well-- we weren't able to pin point and get the same spots we did the first set, but the effect it did have lasted about 8 weeks, and like I mentioned at first, I just had my 3rd set done yesterday. I *believe* we pin pointed the location much better and got closer to the sources this set (vs my 2nd set) and think I'll see similiar results as my first set. Botox are usually done every 2- 4 months-- depending on the person and location.

As for the exact procedure, basically its just a series of injections right underneath the skin. How many injections and how long the procedure takes just depends on the area--- because we do my abdomen, mine involve at least 20 injections and takes about an hour. HOWEVER, while, admittedly it is uncomfortable, its tolerable, and unlike a lot of medications, the side effects are few to none. I am usually in pain, uncomfortable, cranky and run a sligh fever for a few days. Each person is different, and it doesn;t work for everyone, but, if it does work for you, you'll begin to see results and experience some symptom relief withing a few days (my neuro says some of his patients notice a difference immediately..... ).....

I'd be happy to share my experience with it, and how my neuro explained to me how Botox works-- its mechanism of action, why, etc. It would also be neat to swap experiences and thoughts with some one who has CRPS due to a trauma/nerve injury...... PM me if you'd like to talk more.

Hope this helps a little

L2L

Ps-- if you do decide to try it, make sure you get a neurologist or pain specialist who has experience with it

Thank You every bit of info is usefull and very much appreciated. I do have a dr. that is very qualified. Fortunately all but 2 have been top notch. The PM doc I have had is awesome. From what I have read there are some people who have not been so lucky.

Thanks Soooo Much! Like your user name......I too!

RSD friend..........Debbie