Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 11-02-2015, 03:24 AM #11
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Originally Posted by Juliek72 View Post
I was doing some research but not much of it says about the recovery time after transplant. I did see some things that says 6-8 weeks is that true?


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Recovery for the trial is only a few days generally. This is because the only thing that gets implanted along your spine is the wired lead to the stimulator. Yet, the permanent implant means that they would surgically insert all of the hardware in your body: the stimulator, the lead, etc.. There is a lot more to that surgery, so that is going to take a lot longer to heal from. What that total time would be, I truly do not know (though I heard recovery time MIGHT be right around 3 months). The permanent implantation is a pretty significant surgery.

You may have already checked this out:

https://www.youtube.com/watch?v=1CqWUPPAxsM

AND--- This is the company that made the stimulator that my surgeon used:

http://www.bostonscientific.com/en-U...r-systems.html
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Old 11-02-2015, 03:27 PM #12
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I did the trial and ended up having it fail big time. Yet, let me say this, I highly recommend you give it a try. Even though my experience was extremely physically painful, I'm glad that I at least tried. Because had it worked, I truly believe my pain would have greatly decreased and I would be much more active than I am now. And this could really help you in your work situation, if successful. One other thing. Yes, give it a great deal of thought. BUT... You are correct, you do have a short time frame in order to set this up and do, for the reasons you mentioned concerning your insurance, and given the fact that you must squeeze a psych eval in the time frame between now and when the surgery must happen, which is before the end of the year. So, you'll have to get after it quick, IF YOU do indeed decide to do it. If it were me, I'd go for it! AGAIN.. I'm no medical professional. I am just speaking from my own experience.

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Dearest Juliek72

As others have suggested, please do your research.
I wish I had. I was diagnosed with CRPS Type II upper right extremity end of '12. The last hope for pain relief was the SCS. I so trusted my Doctor that I asked no questions and he offered no CRPS INFO. I just watched the video the company puts out. The trial was 4days in summer of '13. The pulsations offered enough 'relief' that my Dr and I decided to go forward with the permanent. BUT just the painful trial procedure caused burning and pain to spread to left forearm, top of left hand, tops of both feet, and both shins.
To this day, I become so angry at myself for not stopping there. I was know i was desperate for relief, to go back to work, ect ect.

I am going to skip to last week, 10/15, as the time in between is complicated and not pleasant. (The SCS offered NO pain relief like the trial AT ALL. It caused MORE.)

I FINALLY had the SCS and all the hardware extracted. I am hoping the pain i am feeling (burning, aching, stabbing, at times intolerable) at the two incisions sites are just from the surgery and not CRPS upped intensity or spread.
Also, the surgeon said the removal surgery would 'be easy.'
Easy for him!! This has not been easy for me at all.

I was not going to write anything but then i thought, I wish i had read someone else's story. Someone with CRPS, not a fluff piece by the company.
I will be happy to answer any specific questions, Julie, if you have any.
For me the SCS was not a big decision. It should have been.
I wish you well.
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Old 11-02-2015, 03:52 PM #13
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Originally Posted by mizoni View Post
Dearest Juliek72

As others have suggested, please do your research.
I wish I had. I was diagnosed with CRPS Type II upper right extremity end of '12. The last hope for pain relief was the SCS. I so trusted my Doctor that I asked no questions and he offered no CRPS INFO. I just watched the video the company puts out. The trial was 4days in summer of '13. The pulsations offered enough 'relief' that my Dr and I decided to go forward with the permanent. BUT just the painful trial procedure caused burning and pain to spread to left forearm, top of left hand, tops of both feet, and both shins.
To this day, I become so angry at myself for not stopping there. I was know i was desperate for relief, to go back to work, ect ect.

I am going to skip to last week, 10/15, as the time in between is complicated and not pleasant. (The SCS offered NO pain relief like the trial AT ALL. It caused MORE.)

I FINALLY had the SCS and all the hardware extracted. I am hoping the pain i am feeling (burning, aching, stabbing, at times intolerable) at the two incisions sites are just from the surgery and not CRPS upped intensity or spread.
Also, the surgeon said the removal surgery would 'be easy.'
Easy for him!! This has not been easy for me at all.

I was not going to write anything but then i thought, I wish i had read someone else's story. Someone with CRPS, not a fluff piece by the company.
I will be happy to answer any specific questions, Julie, if you have any.
For me the SCS was not a big decision. It should have been.
I wish you well.
I posted a more complete version elsewhere on the site. I'll just add this to my post here, since I was quoted. The minute they flipped on the switch to my SCS post OP, I screamed, cried, yelled, sobbed, and wept for 17 straight unforgettable hours. I didn' know that someone could hurt that badly and actually live! t prayed to God that He would end my life that day. The woman that I was with cried as she watched me suffer, knowing all she could do was pray. Yet, had I not tried, I would kick myself to this day for not giving it a shot. Everyone is different. Some get good results, others of us-not so good. Julie, the decision is yours. According to my doctor, this surgery is successful in 85% of the cases it is tried upon. Yet, as was my case and others too, (obviously) there is always that other 15%. Good luck with whatever YOU decide.
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Old 11-09-2015, 05:37 PM #14
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Thumbs up Thanks, Spike and mizoni

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Originally Posted by -Spike- View Post
I posted a more complete version elsewhere on the site. I'll just add this to my post here, since I was quoted. The minute they flipped on the switch to my SCS post OP, I screamed, cried, yelled, sobbed, and wept for 17 straight unforgettable hours. I didn' know that someone could hurt that badly and actually live! t prayed to God that He would end my life that day. The woman that I was with cried as she watched me suffer, knowing all she could do was pray. Yet, had I not tried, I would kick myself to this day for not giving it a shot. Everyone is different. Some get good results, others of us-not so good. Julie, the decision is yours. According to my doctor, this surgery is successful in 85% of the cases it is tried upon. Yet, as was my case and others too, (obviously) there is always that other 15%. Good luck with whatever YOU decide.
Hi Spike and mizoni, I applaud your sharing details.

Spike, I wonder if that 85% success rate is with CRPS?

I have only heard/read of people with CRPS being very, very sorry they ever did SCS. I wonder if there is any success with CRPS and SCS?

I know every incision/operation I have causes a severe flare or a spread to the area where the incision was made. That's just my experience.

I hope we can find some success stories and can post them, along with the non-success stories.


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Old 11-10-2015, 02:46 PM #15
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Originally Posted by DejaVu View Post
Hi Spike and mizoni, I applaud your sharing details.

Spike, I wonder if that 85% success rate is with CRPS?

I have only heard/read of people with CRPS being very, very sorry they ever did SCS. I wonder if there is any success with CRPS and SCS?

I know every incision/operation I have causes a severe flare or a spread to the area where the incision was made. That's just my experience.

I hope we can find some success stories and can post them, along with the non-success stories.


DejaVu
Interesting!!! The next time I see the doctor that quoted those figures to me, I'm going to ask him if his numbers are overall for all chronic pain conditions, or just for CRPS. Your point is a very good one. Thank you so much for mentioning it! I'll have to ask.

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