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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Epidural Cath-A-Port / Epidural Infusion (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/202624-epidural-cath-port-epidural-infusion.html)

zookester 03-28-2014 07:52 PM

Quote:

Originally Posted by tos8 (Post 1059703)
That's fantastic Tessa! Do you know if this works for people with upper body RSD? I also have crps type 2. But mine is in my upper body and arms and my dr told me I would not be a candidate for even the SCS because it wouldn't help.

Thank you tos8!! Yes, it does work with upper body CRPS II. I don't actually know how well it would work for RSD/CRPS because all of the studies I've seen all discuss patients that have had clear nerve damage. For upper body CRPS II much of the research stems from those who have suffered the effects of CRPS after chemo/radiation.

So far I am very happy with how this is working. Of course we need to continue to tweak the medications but, I can really see how my life could be greatly improved by using this versus some of the other things I have tried.

Good luck to ya,
Tessa

Nanc 03-28-2014 09:27 PM

So happy to hear you are doing better today Tessa, and that so far this is successful. SO happy for you!!!

Here's to hoping you continue to have success with this treatment and that you don't pee yourself anymore :D

I have had a migraine all day, but wanted to check in on you...now I know, so to bed I go.

Take care,
Nanc
:hug:

tos8 03-28-2014 09:36 PM

I am so glad your getting some relief! Hmm this makes me think about going and seeing a PM dr. I have CRPS type II from 2 very botched surgeries and the issues we have always found is that I not only have the CRPS, But I also have major damage from the surgeries, so they haven't ever been able to come up with any solutions because if its not 1 issue its another. Where this treatment your trying seems that maybe it could help both my problems.

Vrae 03-29-2014 12:05 AM

overcomer
 
Little triumphs… air doesn’t hurt? touch doesn’t hurt? and walking without a limp? …THAT’S FRIGGIN HUGE!! BIG. BIG. BIG. I AM SOOOOOO EXCITED FOR YOU! You are an overcomer. Period. You haven’t given up. I bet they are fascinated with you… and CRPS too.. bonus. You are a good teacher for them.

Awe T.. you’re too sweet, or on drugs! Lmao… :D

:( don’t let the peeing thing get you down. Like you said it’s going to take a minute to get all the meds worked out. Atta girl, don’t lose your sense of humor. :) You can totally do this! You ARE doing this! :hug:

anon6715 03-29-2014 02:20 PM

Oh my gosh, Tessa! I'm sorry I've only just seen this today. Good luck with the treatment. You are being so very brave! And good for you for taking control of your treatment. I know you always do but still...you rock!

zookester 03-29-2014 05:27 PM

Day 3 - Doing the Happy Dance!!
 
Hello All,

I am so frickn' excited!! I have been absolutely pain free in my right leg for 26 hours and only very minimal pain in the areas of spread. It seems so hard to believe that just over 24 hours ago- I was in total agony, begging for anything that would knock me out and rid me of the pain. And now... I'm nearly running the hall ways!! I am just ecstatic right now. Shout from the roof top excited.

Honestly, this is so doable!!

Thanks All - I really appreciate it!:hug:

ginnie 03-29-2014 05:35 PM

Hi zooester
 
Good to hear of these results. Keep posting as to what happens. You offer more hope to people who have this condition. I know many are watching and listening to you right now, praying that this works for you, so that they too many have a chance to try this. Thank you for being so brave. ginnie:hug:

RSD ME 03-29-2014 05:35 PM

I am so happy for you Tessa! I hope you keep feeling better every day. My thoughts and prayers are always with you. You go girl! Yahoo!!

Vrae 03-29-2014 07:07 PM

:yahoo:

Oh wow Tessa.. This is FANTASTIC news!! :hug: I hope this continues and that this changes your life for the better, forever! I believe this could hold promise for many of us. I bet your husband is also excited as can be. Thanks so much for the update! I hope you are getting some rest!

:You-Rock:

zookester 03-29-2014 07:46 PM

Quote:

Originally Posted by Vrae (Post 1060170)
:yahoo:

Oh wow Tessa.. This is FANTASTIC news!! :hug: I hope this continues and that this changes your life for the better, forever! I believe this could hold promise for many of us. I bet your husband is also excited as can be. Thanks so much for the update! I hope you are getting some rest!

:You-Rock:

Aw thanks Vrae!!!!

I've been wanting to write so much more but, I'm afraid with the pain being gone and a little medication on board that I am sleeping often. Yes, that alone is so refreshing! I slept 7 full hours and not once was I awoken from pain.. it is almost unreal. haha.. I feel like I need to pinch myself just to make sure I'm not dreaming!

I do believe 100% that this form of therapy could help a lot of us. In short the only thing that I would say is difficult is getting through the initial epidural bolus(s) that are needed to get on top of the pain and to determine how much is needed.

It looks like I will be here until Monday or Tuesday but so far this is amazing!


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