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CRPSsongbird 01-03-2013 11:16 AM

wow! 6 of them...ugh I would hate that. My dr. (mind you this is just his opinion) doesn't feel that it's productive to do so many he said he will only do 2 on rare occasions 3 blocks, before moving on to other treatment plans. I don't know how he ranks in the nation/world but he is "one of the best" CRPS/RSD treatment docs in my town.
I absolutely LOVE the Physical therapist he's sent me to. He studies and goes to conferences/lectures on CRPS and I LOVE his positive attitude. He gives me such hope that I CAN overcome this with hard-work and determination to get better! He has worked with a LOT of CRPSA patients in my town and believes we caught mine early enough to make a real difference, as long as the RSD doesn't go haywire.

I was wondering if your doctor talked about P/T (gentle mind you) while using some form of numbing agent/ anesthesia to make sure you're not in severe pain while doing P/T. He has a plan to trick my brain into realizing there isn't anything hurt so my body needs to stop trying to "protect" itself. basically do as many exercises/motions that you can slowly building up, trying to get your brain to respond to NORMAL movements that do not have pain, so your nerves and brain quit responding to the pain signals. I don';t know how that works for later stage patients, but he said it has a high success rate for patients in the "acute" stage.

Dubious 01-04-2013 12:13 AM

Quote:

Originally Posted by EMILY ANDERSON (Post 944170)
wow! 6 of them...ugh I would hate that. My dr. (mind you this is just his opinion) doesn't feel that it's productive to do so many he said he will only do 2 on rare occasions 3 blocks, before moving on to other treatment plans. I don't know how he ranks in the nation/world but he is "one of the best" CRPS/RSD treatment docs in my town.
I absolutely LOVE the Physical therapist he's sent me to. He studies and goes to conferences/lectures on CRPS and I LOVE his positive attitude. He gives me such hope that I CAN overcome this with hard-work and determination to get better! He has worked with a LOT of CRPSA patients in my town and believes we caught mine early enough to make a real difference, as long as the RSD doesn't go haywire.

I was wondering if your doctor talked about P/T (gentle mind you) while using some form of numbing agent/ anesthesia to make sure you're not in severe pain while doing P/T. He has a plan to trick my brain into realizing there isn't anything hurt so my body needs to stop trying to "protect" itself. basically do as many exercises/motions that you can slowly building up, trying to get your brain to respond to NORMAL movements that do not have pain, so your nerves and brain quit responding to the pain signals. I don';t know how that works for later stage patients, but he said it has a high success rate for patients in the "acute" stage.

Hi Emily,

I should clarify....I received initially 3 over several weeks and then a few weeks later 3 more at the beginning. Then from my best recollection I received 2-3 every 3 to 5 months. That's where I am at now; 5 years into it. And I am not sure what "other treatment" plans look like for you but for me they started talking spinal cord stimulator which sounds oh-so-much more invasive than a little ole stellate block from time to time! Yup, I got the raised eyebrow treatment from some who thought 8 or 9 SGB's total were excessive. But they don't walk in my shoes so screw 'em!

What you and everyone else will (or should) tell you is that their own experience is unique, generally, and all will have some personal pattern of relative relief that they have fallen into. So while I might think your PM doc is a jack-*** for his minimalistic approach, others may call HIS ideas excessive!

I can only share what has worked for me and if I had stopped at 2 or 3, I would have gone postal-crazy long ago!

As far as how my PT went, I had a cervical fusion, 3 months later a shoulder reconstruction for whom the ortho severely damaged my brachial plexus; starting the CRPS. It was very early during the shoulder PT that I knew something was heinously afoul as just the action of the therapist touching my forearm sent me into fits of hysteria and tears. Sixteen ES vicodine a day didn't touch the pain and I got almost no sleep for months. I sent myself to the neurologist at 3 weeks out of concern of the atrophy and motor loss not to mention the pain and after very abnormal EMG results, he recommended PM so at 5 weeks I got started on SGB's. I too feel fortunate at an early diagnosis (I cheated on expediting the diagnosis as I am/was also a health care provider) so I didn't wait the usual many months to start effective therapy.

CRPSsongbird 01-04-2013 11:55 AM

Dubious
Oh geez you have been through the ringer!! I hope you find SOMETHING the help at least make the day bearable!! You are CORRECT everyone is different in their symptoms/treatment! I thought it was funny as the other day my PCP finally admitted he had no idea how to treat this and is referring me out finally!!! lolol I could've told him he didn't know but Doctors don't tend to like that! Shessh....I hope you get "better" soon or at least have your symptoms retreat a little!

LIT LOVE 01-04-2013 01:43 PM

Almost everyone that has had the disorder for any length of time has been through the ringer... I'm not trying to lessen Dubious' experience at all, just noting that this is the reality of RSD. Unpleasant procedures and meds, that have to be experimented with to determine which gives (or does not give) the highest quality of life. And at different time periods, based on mental health, burnout, increased or decreased coping mechanisms, living and job situations, will dictate which course to follow at that particular time. There just is no one size fits all. The SCS scares me, but some have had great success with it.

Neurochic 01-04-2013 10:07 PM

I think Lit Love is on the money with the comments that all of the experimentation and unpleasant stuff is life with CRPS. That is simply the reality of living with this condition in anything other than a mild form for any length of time. It's also true that at different periods in the course of the condition, different management strategies will be needed.

From my research, the current view amongst the leading CRPS researchers and clinicians in relation to sympathetic blocks is exactly as Emily's specialist described it to her. The view seems to be very much turning away from doing endless repeated blocks to doing only 1-3 and largely using it as a diagnostic tool. It's not used as a diagnostic tool to determine how the pain is mediated though, it is used as a diagnostic tool to determine whether CRPS is present or not. The general body of opinion seems to be that if a patient receives any pain or other symptom relief (other than for the period of a few hours whilst the local anaesthetic in the block is working) then this is a 'bonus' rather than an expected outcome.

I wouldn't be surprised to see treatment guidance in the future placing far less emphasis on carrying out multiple sympathetic blocks. I suspect that they will increasingly be seen to have minimal value as a CRPS 'treatment'. Of course there will always be individuals for whom multiple blocks will be a helpful part of longer term treatment but for the typical majority, I think it will be different.

In much the same way, it has become much clearer that as more work has been done using SCS with larger numbers of patients, there are typical CRPS patients who are likely to get benefit and patients who won't. The patients for whom they are generally most effective are those where their symptoms are confined to one limb. Patients with pain in multiple limbs are much less suitable for SCS implantation because they typically have much poorer outcomes. As increased information becomes available, it at least allows everyone to make more informed choices.

Dubious 01-05-2013 01:08 AM

Quote:

Originally Posted by Neurochic (Post 944627)
I think Lit Love is on the money with the comments that all of the experimentation and unpleasant stuff is life with CRPS. That is simply the reality of living with this condition in anything other than a mild form for any length of time. It's also true that at different periods in the course of the condition, different management strategies will be needed.

From my research, the current view amongst the leading CRPS researchers and clinicians in relation to sympathetic blocks is exactly as Emily's specialist described it to her. The view seems to be very much turning away from doing endless repeated blocks to doing only 1-3 and largely using it as a diagnostic tool. It's not used as a diagnostic tool to determine how the pain is mediated though, it is used as a diagnostic tool to determine whether CRPS is present or not. The general body of opinion seems to be that if a patient receives any pain or other symptom relief (other than for the period of a few hours whilst the local anaesthetic in the block is working) then this is a 'bonus' rather than an expected outcome.

I wouldn't be surprised to see treatment guidance in the future placing far less emphasis on carrying out multiple sympathetic blocks. I suspect that they will increasingly be seen to have minimal value as a CRPS 'treatment'. Of course there will always be individuals for whom multiple blocks will be a helpful part of longer term treatment but for the typical majority, I think it will be different.

In much the same way, it has become much clearer that as more work has been done using SCS with larger numbers of patients, there are typical CRPS patients who are likely to get benefit and patients who won't. The patients for whom they are generally most effective are those where their symptoms are confined to one limb. Patients with pain in multiple limbs are much less suitable for SCS implantation because they typically have much poorer outcomes. As increased information becomes available, it at least allows everyone to make more informed choices.



I guess my reply to the last several posts would be in agreement that there is not one way or even several ways to address CRPS. Each of us has our own road we have traveled, by trial and error or blind luck and no controlled study, RCT or anyone else's opinion will change what we have already empirically found to individually work for us!

While I don't at all agree with neurochic that SGB's will run their course and be shelved (there are still many of us with SMP that respond therapeutically in addition to diagnostically), but I will submit that there are certainly those who simply are SGB failures and repeat procedures should not occur. None of us are the same!

And Litlove, there is nothing you can say that changes my amazingly positive experiences (as much as I hate the SGB process, it worked for me). Emily, thanks for the kind wishes...I have been dealing with this since early 2008 and am truly thankfull after reading about others worse off than me. I comparatively consider myself fortunate even though I have lost much (as have we all).

I guess my summation is that I am not at all impressed with medical science or professional talking heads (I understand, having been educated as such and participated in both the research side and medlegal process) since CRPS research is administered by no one who has ever experienced what we have been through yet the "experts" will tell us what we all need or can have! Reminds me of managed care/work comp/national health care...sorry, I can't go there....

LIT LOVE 01-05-2013 01:23 PM

Dubious, I think you misunderstood my post. I even thanked you for the post the other day. I was really responding to the OP thinking your case was extraordinary in what you've had to deal with. And well, of course it has been, but it's typical for an RSD patient.

Dubious 01-05-2013 02:20 PM

Quote:

Originally Posted by LIT LOVE (Post 944775)
Dubious, I think you misunderstood my post. I even thanked you for the post the other day. I was really responding to the OP thinking your case was extraordinary in what you've had to deal with. And well, of course it has been, but it's typical for an RSD patient.

Unless I read it wrong....I think we are agreeing! Aren't we???

Neurochic 01-05-2013 02:26 PM

Dubious

You have very much misunderstood what I was saying. I didn't say that SGBs would run their course and be 'shelved'. I was very careful in the language I used exactly so that I didn't say that. I was, in fact, making the point that there will always be people for whom sympathetic blocks are an effective therapeutic option. I was also careful to recognise that people are all different as are their symptom patterns. I want to make sure that what I actually said is correctly represented.

You clearly have a very strong view about the medical profession and the current vogue for evidence based medicine so it is not something I will comment on. I would only comment that taking internet based medical advice from other people with a diagnosis that purports to be the same as ones' own is certainly not risk free, information offered in good faith can be completely incorrect nor is it necessarily going to give any better an outcome. Many of us share professional knowledge of the healthcare industries and/or medico-legal fields but although we don't share your views, ours are still just as valid.

Dubious 01-05-2013 03:23 PM

Quote:

Originally Posted by Neurochic (Post 944805)
Dubious

You have very much misunderstood what I was saying. I didn't say that SGBs would run their course and be 'shelved'. I was very careful in the language I used exactly so that I didn't say that. I was, in fact, making the point that there will always be people for whom sympathetic blocks are an effective therapeutic option. I was also careful to recognise that people are all different as are their symptom patterns. I want to make sure that what I actually said is correctly represented.

You clearly have a very strong view about the medical profession and the current vogue for evidence based medicine so it is not something I will comment on. I would only comment that taking internet based medical advice from other people with a diagnosis that purports to be the same as ones' own is certainly not risk free, information offered in good faith can be completely incorrect nor is it necessarily going to give any better an outcome. Many of us share professional knowledge of the healthcare industries and/or medico-legal fields but although we don't share your views, ours are still just as valid.

NC,

Not sure I disagree with anything you just said! You re-stated my point...you just said it better!


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