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 08-30-2011, 11:39 PM #1
6kiddos 6kiddos is offline
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Question Need opinions from those who know. =)

I have narrowed my PM's down to 2. The confusing part is that they both have some similar ideas and yet in the main area they are opposite.

Both have the idea that there is still an underlying issue with my plantar fasciitis (how this monster started). They both believe that this is why the sympathetic blocks have only worked for a short while (hours..not days).

Dr. #1 - believes we should treat the CRPS and try to get that pain level down and then deal with what is going on in my feet. Since I have been on therapeutic levels of the medications long enough and still have a lot of pain (though the burning and sensitivity have decreased markedly). He believes that the trial for the SCS should be the next step.

Dr. #2 - believes we should treat my feet first and THEN the CRPS. His idea is to do essentially cortisone shots in my feet from the bottom (very painful and would be done under sedation). He wants to do both feet at the same time. It would be a series of 3 shots over 6 weeks. Then if pain still remains, he would then do another sympathetic block. (essentially hoping the feet are better and the remaining pain is CRPS). THEN if I am still not doing well, I would have a trial for the SCS.

What do you all think? I have read MANY places to not do anything to the CRPS limb unless needed badly. I just don't know which way seems best.

Thanks for the help and opinions. =)

J
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Old 08-31-2011, 01:13 AM #2
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Question Which seems to make more sense?

Does it make sense to try all non/less invasive procedures before moving on/resorting to the more invasive procedures?
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Old 08-31-2011, 01:50 AM #3
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I totally agree with above. I would try blocks, and then do physical therapy ALOT of it for awhile, pool therapy, PT, etc, and do it medicated for awhile for the first while until it gets more under control. Its called "functional physical therapy" doing it doped up makes it easier to do because your mind isnt completely on your pain. I would WAIT WAIT WAIT WAIT for the SCS. Reason I say. You have children who need you. The recovery for surgery is a so difficult and way longer than they tell you... everyone who starts moving in the time that they tell you gets slipped leads etc... i took twice the amount of time and didnt have it. 6 months to a year is a long time to basically be useless, *from experience* and being that the RSD is in the feet, alot of times they can NOT get the stimulation all the way down to the feet because its so far. When its in the arms its a lesser distance than all the way to the feet. AND ALOT of cases RSD SPREADS with that surgery... (((

Lumbar blocks are a huge help, and if those dont work for you anymore, have you tried oral ketamine? If you can take the oral ketamine and then do PT with that? Or even diladid for the breakthough pain when doing the PT?

IF you would like to talk about my experience with SCS give I would be more than happy to talk to you on the phone so its easier for both of us. PM me your number or visa versa and we can talk on the phone. BUT i would just cautionally go into the SCS before you try EVERYTHING else... I have a permanant in, and if I could go back I wouldnt have gotten it... But thats me.

I have hope for you and pray for comfort and low pain for you. May the Lord give you strength and wisdom during this time.

Send me a pm and I am more than happy to give you my experience about my whole surgery process before during and after I had mine in 2 years ago

Hannah
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Old 08-31-2011, 08:12 AM #4
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Thank you Hannah. =) I will send you a message when I have time. (later today?)

Yes, while it does make sense to do less invasive first, I am not sure about the injections into my feet (cortisone). Can't this cause issues too, like flares and spread? I have had 6 sympathetic blocks already. Thankfully, they have helped with the burning and much of the sensitivity but they helped the pain for 5-10 hrs. I do know the feet are hard to get with the SCS. This is why I have put it off hoping for something else to help. I have also been working on getting my home back in order (since I was basically non-functional the first 6 months of this year due to the pain). It's amazing how bad it gets! LOL. I can now walk into my walk-in closet, haha. The surface is passable downstairs, but underneath and upstairs? You take you life in your own hands when you open a cupboard or go upstairs. LOL.

None of the dr's have talked about PT with me. I have even brought it up and they say it is a good idea, etc but don't give me anything from there. I do know I am supposed to have the prescription from my dr. in order for my ins. to cover it. So frustrating. It might be because I think I am a relatively mild case in that from all outward appearances I look fine. (unless I am discoloring LOL but then I usually wear socks so they can't see anyway). I do not have swelling and because I have a high pain tolerance, I only take tramadol and lortab for pain. I don't have anything long-acting and they have never talked about anything along those lines. sigh. I told dh last night that maybe I use the pain meds wrong. LOL. I use them so I can function and get done what I have to get done. Laundry, house cleaning (some), etc. I do take much longer to do things than I used to but that is life. lol.

Thanks for the input.
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Old 08-31-2011, 08:59 AM #5
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The success rate for the SCS is pretty low.

If the idea is to treat your feet, perhaps you would want to consult the very best podiatrist in your area to find out what the latest treatment for plantar fasciitis is. My neighbor had a lot of success with injections of her own blood, which had been withdrawn and enriched with some kind of protein (and I could have that wrong, maybe it was a steroid or something). Cortisone is old medicine... If you are going to have injections, it may as well be with some decent stuff.

Good luck to you. Are you able to consider ketamine infusions?

xoxox Sandy

Quote:
Originally Posted by 6kiddos View Post
I have narrowed my PM's down to 2. The confusing part is that they both have some similar ideas and yet in the main area they are opposite.

Both have the idea that there is still an underlying issue with my plantar fasciitis (how this monster started). They both believe that this is why the sympathetic blocks have only worked for a short while (hours..not days).

Dr. #1 - believes we should treat the CRPS and try to get that pain level down and then deal with what is going on in my feet. Since I have been on therapeutic levels of the medications long enough and still have a lot of pain (though the burning and sensitivity have decreased markedly). He believes that the trial for the SCS should be the next step.

Dr. #2 - believes we should treat my feet first and THEN the CRPS. His idea is to do essentially cortisone shots in my feet from the bottom (very painful and would be done under sedation). He wants to do both feet at the same time. It would be a series of 3 shots over 6 weeks. Then if pain still remains, he would then do another sympathetic block. (essentially hoping the feet are better and the remaining pain is CRPS). THEN if I am still not doing well, I would have a trial for the SCS.

What do you all think? I have read MANY places to not do anything to the CRPS limb unless needed badly. I just don't know which way seems best.

Thanks for the help and opinions. =)

J
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Old 08-31-2011, 11:12 AM #6
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I can tell you I had a cortisone shot in my ankle, prior to the diagnosis of RSD and within 24 hours, my pain had tripled, every step I took, It felt like those foam peanuts where in there and I was crushing them.
Thats when the 1st dr. said I think you have RSD. The stimulator trial was easy to get hooked up (30 min. or so, done under local) and if you have a decent dr. he/she will tell you that unless you have more then 50% improvement they would not recommend the surgery for permenance. good luck
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Old 08-31-2011, 12:48 PM #7
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I know how frustrating it can be with the pain docs sometimes. If you haven't been through physical therapy and all they have really done is blocks then I think that there are other options that the docs should be considering. I would push for the PT and tell them that you need the script for insurance. It will also tell the therapist what sort of therapy that you need.

The first time I did therapy they had me start in the pool, which is easier because you are not full weight bearing for the exercises. Gradually we moved out of the pool and I was able to get a lot of functionality back. The only problem with the pool was that the cool temperature (sometimes just from getting out of the pool) hurt quite a bit sometimes. But it did improve my functionality.

After my last flare up and the problems that I have encounter since then over the past few months, I have been working with a home care physical therapist. We started with all seated exercises since I wasn't able to stand at all when we started the therapy. Then we moved up to standing at the counter with holding, and have just started doing stuff with no hands and I am walking with a walker (not far and very slowly but compared to where I was at 2 months ago it is an amazing amount of freedom).

I also discovered the benefits of a TENS machine during physical therapy. It has been more effective than any medication in helping with my pain. My current therapist was able to get me a personal one that I can wear all day. This has been amazing and I don't think that I would be walking without it.

Just seems like there are other options out there to treat the RSD that maybe haven't been tried yet. Physical therapy is a long process and it can be really frustrating at first because it doesn't seem like a lot of progress...but it can really help over time if you do all the things they tell you.

As far as the cortisone shots...I don't know what to tell you. I had really bad reactions and spread after the lumbar sympathetic block I had in January so I would be hesitant personally to do anything that meant shots of any kind. But I know that mine is a rare case (I think) and it really comes down to what you feel is the best decision in your case. Just make sure you are able to weigh the benefits and risks before hand.

If either of your PMs has a problem discussing all of these things with you, your concerns and ideas about treatment, then they are not the doctor for you. It can be hard to find a doc that is a good fit, but before doing any procedure that you are nervous about you should feel confident that you and your doctor have made the best choice for YOU. Some docs are quick to jump into procedures and I know that my experience with the doc that did the procedure in January that went badly was that he pushed the blocks on me, didn't really discuss things with me, and then when it didn't work out I was just pushed off on someone else. In hind sight I wish that I had felt more comfortable with the doctor before just agreeing on a procedure, if I had made that a priority instead of being blinded by the pain, I think things would have turned out differently. Instead I felt like I got poor care and have just been trying to deal with the fall out...and on my own instead of having the support of a physician to help me. I've found a good primary care doc since then who has helped me with the physical therapy, but the few PM docs I have seen just have not given me good vibes. There are no guarantees...things can always go wrong...but I think it's important to go with a doctor who will be there for you if things don't go the way you want.
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