Hi thank you. Yes I ws talking about nerve block shots. I had 2 in my ankle but none in my back but the pain doc felt they wouldn't work so why I needed the scs. When I was at cleveland the dr convigton said though I too don't have edema or some other symptoms of rsd mine is very similar to it. Also how important it is to be on my legs so they don't atrophy. Depending I'm either going to see another rsd pain doc or wait for the reumo to see about myofacial etc. I'm so sorry for al your going through too. If I can help support you in any way. I know very little in the diseases. Im a weird case too cause my age and history. Good luck.

Daniella; Thanks for the offer of support but you should worry about getting a corect dx. Doctors get a commission for placing SCS systems & pumps in patients & then they make money on the upkeep of them. I would wait as long as possible before having anything implanted in your spine. If anything goes wrong w/ the unit, they have to go back in. I know patients who had 5 surgeries before giving up on them. I also know patients that got relief from them but few that got total relief w/o any complications. I had 5 surgeries for the pump before having it removed. It just wears your body down & it looks like the spine as well. I have arthritis of the spine as well now. As I said, I didn't have the symptoms of RSD at first either, except for the pain. Good luck & take care.
Gramps

Thanks. I know that is why I'm skeptical. I have an apt with a pain doc who specializes in rsd. He wrote some articles and said that he feels those implants should be one of the last things done. Will see though when I go. I willl let you know what happens after my apt on Tues.I truly am sorry for all your pain. Its so sad that some docs use our pain to make money too.

Hi, I have Centralized pain Syndrome (complex regional pain syndrome) which is similiar to RSD. After many years of frustration and severe pain, i got so desperate i begged the Dr to amputate my leg ( all this was pre MS), amputation did reduce my pain levels but did not get tid of it- i had been warned this could be the case. Eventually i had a long term epidural catherter inserted and used to give myself injections of morphine and marcaine 3 times per day- for the 1st time in years i had minimal pain. unfortunately after about 18months the epidural cath failed and left scar tissue in the epidural space so that it could not be replaced. It was replaced with a syncromed medication infuion pump by medtronic ( check out there site for some great information). The pump sits in my abdomen and delivers morphine ( low dose) directly into the fluid around the spinal cord ( deeper than epidural) called the intrathecal space. FOr me it has been magical relief, after years of not being able to work because i was in s much pain and also on such huge doses of opiates, suddenly i was able to get back to part time work. These sorts of treatments are considered last resort, they are expensive and have a lot of side effects potentiallu. I have been lucky, they only side effect i have had is some edema to my leg, that has been managed with compression stocking and probably would not bee so bad if i were not wheelchair bound as muscle activity from waling would ususally help.
I know you wan t answers as to what the issue is but if i were you i would deal with the pain first, chronic pain is soul destroying to say the least, it drove me to the point of suicide before the amputation but i have had my pump in place for nearly 6 yrars ( it willl need replacement soon when the baterries run out but that is a simple procedure)
I hope you get some answers soon
regards
Karen

Kebsa I'm so sorry for all you have been through. I think the catheter they wanted for me at one time was similar but just for 6 weeks. Then the next doc thought the scs. Now I will go see a rsd pain specialist next week. I hope to get some less invasive relief. If you didn't have your leg amputated what would of happened? Was there any hope in reabilitation with the implant?Take care.

Kebsa; Prior to implanting my infusion pump, a neurosurgeon warned me it wouldn't relieve my pain. I asked him to amputate both of my legs then. He told me this would be unethical & wouldn't relieve my pain due to phantom pain. Unlike you, I had several problems & no relief from the pump. However, I am happy that you have gotten relief w/ no complications & pray that you have continued success. CRPS, (RSD), is different than CPS. My CPS has overwhelmed my RSD pain that has disabled me since 2001. This in no way minimizes the suffering of CRPS,(RSD), which as we both know is quite severe. Unfortunately, w/ CPS, opiates have little effect no matter how they are delivered. Take care & good luck.
Gramps

serious discussion about our primary issue - the pain.
Second seems to be What to Do?
And lastly, Why?

First off, we obviously all have the gamut of 'pains'....in all of the manifestations, permutations and griefs that it causes. I'd thought that was a 'given' here, but, that has and is changing with new people and it's good!... It is important because there are no medically definite descriptions of PAIN, it can get more subjective, and yet simpler at the same time. By that I mean, that, each of us, as contributors to this board ADD words to our medical vocabularies that better describe all we feel or not feel.
It becomes even harder to describe the aspects of our pain[s] to others who cannot experience our issues. Be they family, friends, or medical professionals.
Second - What to Do? For newcomers, possibly one of the easiest things to do could be to include in your profile a 'hint' as to where you live. Why? Some of us may live nearby [or relatively so], and might provide you with hints as to good medical resources in your area[via PM's if you ask]. At times that cannot be so - as some of us live really beyond the reach of specialized care, but any and all 'regional' input could be better available to you if we know where you are? Next is finding the right docs and treatments for you....not an easy feat for most of us. In some geographic areas [I am on the fringe of one] this is easier.
I have been able to get specialist 'recommendations' for a multitude of issues since I acquired my neuropathy. I was lucky in that my other specialists- were so forthcoming and honest with me. I have been exceptionally lucky in that respect, but, I know of many others who have not been so fortunate. When I 'interviewed' other specialists, I have changed two, I simply said 'we were not communicating very well' or 'there didn't seem to be any continuity in oversight'..as my reason for changing. No insults, no threats, no name calling -tho there could be many. No repercussions. Not what I wanted to say at all!
It is very hard work to find a really good doctor these days! Look at their offices...they are businesses first! If viewed as a business, if it seems well run, and consistent in their 'customer service' approach. Probably the SERVICE by the doctors-key to the whole business may be good? Example? I'd called one specialists office and was referred to the 'new patient' person....talked to their voice mail...made 3 follow up calls and got a response 13 working days after my initial call. I'd already gone to a more efficient and effective specialist in that field after day 3 or my call to this place. The office I'd called is 'supposed' to be THE best in the area...With certain medical issues, 13 working days is not optimal for many times sensitive conditions...this was one.
Lastly the Why? Most doctors don't try to ask this question per se....they just try to find out What IS to varying degrees and treat that aspect.
The more each of us learns about this neuropathy-thing, the better we can be informed to deal with our docs, challenge and question them intelligently, and get what each of us as individuals needs. It is not always the case, but we sure can give it a hard try at it!
Gramps, like you, at one time I looked into [web-wise] totally severing nerves or amputation. The more I saw, the more I became gun shy. We each make our decisions given our circumstances and info at that particular point in time
To all of you, enough! - j

Dahlek; I'm from the Chicago area & have been treated(?) by some of the best doctors in their field. However, during a clinical trial in 2004-05, one of them made a huge mistake which almost cost me my life. This mistake & the coverup of it has prevented me from receiving proper care, as well is most likely the cause of my recently dx'd CPS. Even the NIH admits there is no treatment for this condition. However, I have secured an appt at the Mayo Clinic to rule out any treatable causes for this condition.
My recent dealings w/ Mayo & Johns Hopkins, and not CPS, is what brought me to this thread. However, as talk continued, the subject went beyond helping Antonia securing an appt w/ Mayo. Soon talk was about RSD, the SCS & infusion pump. I only brought up CPS again when Kebsa wrongly referred to it as CRPS. This also led to me relating my experience about asking for a double amputation since her doctor had performed an amputation on her. I would have much rather stuck to helping Antonia get help than opening up about a condition I know no one understands since many neuros don't understand it yet. There's alot more to CPS than PN pain as it not only uses the peripheral nerves to inflict pain & other sensations. This is another reason I tried to avoid bringing it up on this forum.
Pain is pain & suffering is suffering so I feel for everyone who is in pain & pray they find relief. If you go back farther than the last post or two, you will see how I tried to avoid all this. I was just attempting to help someone get into a hospital, which is why she started this thread. I pray you have a pain free weekend.
Gramps

Gramps

You seem to have gone through a similar experience in terms of a medical screw up. I had a missed diagnosis from an accident, a serious one....you become a medical hot potato when that happens, and no one wants to see you, or they see you and barely examine you.

It has been over 20 years and the practioner I have now, does admit to me that there was likely missed spinal cord damage in addition to the missed SC joint fracture dislocation (usually fatal). Now there is no real recourse for me, as 20 years have gone by and luckily my spinal cord damage has caused me no loss of function except for pain and endurance being upright. I can't tell you what a hey day the insurance companies had with this, other than to say they got off so incredibly easy and my life has been quite difficult. But I could have died 20 years ago in that accident, (not that I don't have my days when I wonder if that would have been more merciful...but, again, I had young kids and it mattered that I be around for them.)

I just would like some relief. I would be, as you advised, extremely cautious in having anything done with my spinal cord or canal right now. Unfortunately, a few years prior to seeing my current and very good neuro, I was given 3 spinal nerve root blocks for T spine herniated discs, which have since calcified, and now due to PN (autonomic) and location of the herniations, are inoperable. If spinal cord damage was known back when I had those injections, I bet they would not have done them. My present neuro says he would not have done them....it is all a big mess. On the other hand the folks that gave me the nerve root blocks ended up referring me and my neuropathy was found.

My PN or small fiber neuropathy is still 'idiopathic', in that no cause for that problem has been discovered, and it does not appear related, or they at this point have no evidence that it relates to my accident. My SFN is body wide, sensory and autonomic. I have a hunch at this point what may be causing it and see the neuro tomorrow to see if he will pursue my hunch.

If my hunch is correct, well, we will see what he can do to relieve my symptoms. It may be that there is no way to relieve my symptoms, which is an awful prospect.

I truly think that we must be very, very, careful that the 'cure' or 'treatment' we pursue is not worse than, or worsens the actual condition itself. Drugs and devices and procedures even if properly done can cause problems for some people. I am trying hard not to dig my own hole any deeper than it is and balancing that with living the best life I can...it 'aint' easy.