Just came across this online....Thought there might be some interested in watching it.

http://www.rsdfoundation.org/en/CNN_RSD.htm

Thanks for posting the link to this video. I had read the story back some time ago, but didn't see the video. I am wanting to send this link to a friend of mine just to show what extreme measures we are willing to go through just to get some relief from this monster. I don't care how much you try to explain this "monster" to anyone, unless you are the one suffering with it you just cannot grasp the amount of pain that one endures with RSD.

HubbywithRSD, I think it is great that you are on this board and trying to help get any info you can for your hubby. He is one lucky guy to have you on his side. This disease destroys so many relationships because it truly affects the person you are and you become somebody that your friends and family don't know. I have tried to remain as easy going as I always have been but when you deal with this pain 24-7 sometimes you just snap.

Again, thanks for your support and contributions you make to this family.

BIG HUGS,
Janet

Thank you so much for your kind words....It's not easy having a loved one who is suffering with this condition. I have good days and bad days too. This morning I was frustrated about his pillows being all over the living-room. (He has at least 3 for each arm) - they make such a mess when he's not in the recliner.....BUT I know he needs them so I restack them on his chair until he's back in it again...little things like that occasionally urk me - I'm only human and do try my best, I just need to remember what their for and who they are for.

I get angry too - Angry because in the time since the RSD in his leg (1995) and now in his arm (2006) 11 YEARS have gone by with no major advancement towards major pain relief and/or recovery. Angry, because his employers didnt care enough when asked for ergo for the drivers arms told my husband and the crew to "buy their own" (on a minimul salary), Angry because his employers have not accepted responsibility for his condition which thus caused the surgery and thus caused the RSD - Angry because the W/C insurance company has denied responsibility there for cutting him off medically and financially - Angry because the "system" does nothing to protect injured workers, their families, and there is no financial security net for someone who developes a serious medical condition. (AKA - Social Security = Slooooocial Security) - People starve and die waiting for an income and treatment......And the list could go on.....I try to harness that anger tho and research, share information, spread the word about RSD, contact elected officials, etc. I have not made progress by leaps and bounds but for each little "bug" I put in ones head I feel I've accomplished something.

Your right - this disease does destroy not only relationships meaning husband/wife and/or partner but also relationships between children and parent....Our oldest remembers dealing with the RSD and dads leg and how it has limited him (no tackle football, no bike rides, skiing, etc)...now he's dealing with dads arm as well and he's angry. He's had so much lost and had his life with his father taken away from him. We were talking about this just the other night....It's extremely hard on him, he's had to take on the role of caregiver, doing "dads jobs", helping more then normal with his siblings, etc. It's a lot of pressure for a teenager...or rather any child.

Our two youngest are struggling with this as well. I used to be home with them all the time while dad was the financial provider. Well no more....I am now working (which is a hard adjustment for them all) and dad is at home. This has thrown them for a loop. Right now my hours have been cut (poor weather for a tourist area and the economy in general) so I have been home a few weekdays and the kids are liking that. I feel somedays as the mom (who always said she'd be home and there for her kids no matter how poor we were) like I've abandoned them - I feel guilty because I'm not here for them. Dad is, I know, but it's still hard - I've been home with them all their lives. Now I cant watch them get on the bus, tell them " Have a good day & I love you" before they head off to school, or brush my daughters hair in the mornings....

One thing I'd like to add, before I close as I've worked my way to tears writing this - is that please - for those of you that suffer from RSD remember to give thanks to your care-giver and to your families. Let them know you appreciate all they do for you and that you need them and appreciate their support. One kind word every day can make the difference in all of our lives. Be their shoulder to cry on if need be - Sometimes they need that reassurance too.

I think many of the feelings and issues you mention- fit so well for anyone in a caretaker role.

It is very hard for the 'healthy" one or family members to really comprehend what the afflicted ones go thru but on the flip side care taking and supporting and working do take a heavy toll too.

In essence both have "lost" the "normal" life and both will go thru the grief steps and at a differing pace.

even for those with 'functional" disabilities- that can still do some normal activities it sometimes is hard for others to understand.
We can do some things/activities and other times aren't able to due pain or that the activity will cause a flare that may last for a week.

Good post !

caregivers are more than welcome to vent here too-

Oh I haft to agree with you hubbywith rsd I have been through the work comp system. I could not even go back to my job I was to high risk so here I am a burden to everyone my town and family. I receive SSDI and Medicare to help me now when I was fighting them for my rights I could not do it alone, being a single mother I needed income so I had to take their offer which did not help me then or now.
I thank the help I get everyday from my neighbor and from my church and the town I live in, I know I’m just a charity case I feel so helpless and just want to give up all hope why should I be a burden to them anymore…Lil

In other places (newspaper and magazine articles; anyplace Robert Schwartzmann can get his name out - and his commercial in), he has claimed 100% success for this German ketamine coma.

The problem is that those of us who were at the BrainTalk Forum at the time remember Kit Delucca: who returned from Germany with no relief whatsoever. So much for 100%. Could there have been, as President Bush might put it, other less successful successes?

Due to almost criminally inadequate medical screening (the failure to obtain a complete medical history - essential when you are trying a dangerous medical experiment on a living human subject), Kit not only returned with the same RSD, but also severe esophogheal damage; the result of laying flat and unconcious for so long. That won't get better either.

The FDA won't allow doc S to try his coma experiment on people in this country, so in order to make money selling ketamine, those newspaper and magazine commercials contain the message that his 5-day outpatient ketamine infusions work pretty well.

According to other Forum members, doc S charges $25,000.00 (cash, check or money order - insurance won't pay for it) for these 5-day outpatient events.

I don't know how much ketamine costs, but veterenarians use it to treat dogs, cats, horses (and maybe even gerbils), so it can't be too expensive. doc S may or may not insert the needle for the infusions (at that price, he should); but after the needle is in you, the most he can do is sit and watch.

That leaves only the outpatient treatment room. If we give the doc the benefit of the doubt and say the combined cost of ketamine and his expertise is $2,500.00 per treatment, that outpatient room better have five-star room service: $2500.00 per day will get you a nice room in Vegas, and you get to stay in it for 24 hours.

There have been wonderful pronouncements about the length of remission following outpatient infusions. In reply to something not nice that I said about them, Mike posted a link to one article that couldn't stop talking about success.

Well, folks, I'm almost 64, and in my old age I have become a really crochety curmudgeon. A bit of a cynic too. I reviewed the article with a touch of skepticism. OK, more than a touch. I can be a real pain in the *** when I want to be, and my comments showed that.

We all pretty much know that that if you're going to get better, you should start trying early. (I have a small problem with this, because I haven't seen any studies showing people with chronic RSD do recover, and nothing about which interventions offer greater hope for that happy event).

I have come to suspect that "getting better" pretty much means the length of remission from sympathetic blocks; and the sooner you get them, the longer the potential relief - if they work at all. Blocks, of course, eventually stop working.

But if there is such a thing as permanent remission from RSD, which suggests a therapy that can lead to such remission, the only documentation I have seen have been individual case studies; only considered somewhat more reliable than anecdotal reports.

Anyway, I read the study Mike wrote about, and I noticed that patients who had RSD less than six months had the really long periods of remission. Amazingly long.

Those patients who had been diagnosed more than three years previous showed more ambiguous results: mainly because someone forgot to do follow-ups on them.

Now, from my research into this disease, I agree with Sudek, Goris, van der Laan and others that the first stage of this disease involves inflammation, and that it can last from three months to several months.

Since researchers have demonstrated that ketamine, lidocaine and bupivacaine (all of which have been infused into RSD patients and provided temporary remission), have antioxidant properties; and oxidants (especially oxygen free radicals), play a central role in inflammation.

It isn't unreasonable to suggest they may be effective against early RSD in this manner. Drugs such as morphine, have no antioxidant effect, nor have they been shown to be effective in temporarily suppressing RSD symptoms.

This isn't proof, of course, but it is an alternative explanation those researchers should have excluded, and science isn't supposed to allow you to "cherry pick". It is a viable alternative, and they chose to ignore it rather than address it.

I don't know how ketamine and these other drugs alter RSD symptoms, but neither do the people who proclaim how wonderful they are. I don't believe their reports of incredibly long-term remissions either. Many of those folks are friends of doc S: if you lie down with dogs, you arise with fleas.

Yup, I believe in guilt by association. Choose your friends wisely or something may come up and bite your ***.

I probably should have kept track of Forum members (here and at BrainTalk) who reported getting ketamine infusions. I recall more complete failures than partical successes, and no remission lasting even a year, but can't swear to it.

Ketamine is a dangerous drug. No one really knows how dangerous, because it has only been FDA approved as an anesthetic, and physicians who use it for off-label research may not be as willing to report adverse reactions resulting from that use.

I do know this: There have been serious breaches in the reporting of "successful" ketamine use in RSD. I also know that Robert Schwartzmann is not quite an honest man. In fact, he may have authored the first outright deceptive article I ever read about this disease.

In that article, he claimed "permanent" relief of RSD symptoms following several sympathectomies. He did it by defining "permanent" as two years; he wrote that 50 years after RSD clinicians began to report that the effects of these procedures rarely lasted much longer than two years.

He didn't exactly lie, but he fell far short of being honest. We expect rigid honesty from scientists, but doc S isn't a scientist: He's a ketamine huckster. I could cite more examples of the divergence between doc S and the truth, but this post is about ketamine.

I don't blame CNN for airing a commercial for doc S; I know they are supposed to have physicians on staff or on call to verify scientific claims, but RSD is one of those hopefully rare disorders in which nearly 100% of the RSD experts are dead wrong. It would be surprising - and a real waste - to learn that CNN had someone who knew what this disease really is. A waste because we need him/her more than CNN does.

I was disappointed with some of their graphics; the ones about the brain. This disease has experts who are deliberately trying to deceive and confuse with claims that this problem is found in the spinal cord. I'm sure it was unintentional, but graphics of the brain in the context of RSD will only further confuse people.

About that particular patient: researchers in several fields are reporting major differences between adults and children; including recoveris from disorders (in many instances, kids get better while adults don't). Stem cell researchers have reported that other cells in children are more malleable than in adults; kinda like stem cell wannabe's. An unscientific way of saying it, but so what?

I hope she stays better for the rest of her life. I think we all feel worse when we learn a child has been cursed with this disease.

Shortly after I began researching this disease, the surgical sympathectomy was finally abandoned. So far as I know, only Kirkpatrick (Medical Chair of RSDSA) write about their continuing usefulness. But all was not bright: it was being replaced by the chemical sympathectomy.

I didn't really understand much about this disease back then, but a chemical sympathectomy sounded pretty stupid to me. I never raised my voice in protest. Not that raising my voice would have stopped anyone; I've been telling people for five years that the antioxidant grape seed extract prevents symptom migration, and feeling utterly impotent every time someone else says it's happening to them.

I knew that Vioxx and others like it would not help RSD patients, but I didn't write any posts saying so. Who knew they would end up killing people?

I don't know whether ketamine will end up killing anyone, or causing permanent brain damage, but I don't like the thought of a girl waking up and not recognizing her parents.

I do know ketamine isn't as effective as it's proponents claim. I do know that ketamine comas aren't 100% successful. I do know that outpatient ketamine infusions don't do what doc S says they do. And I do know that $25,000.00 for an outpatient room and some ketamine is way too pricey.

As I mentioned in another post, doc S is getting older and should think about building up his nest egg. I just don't think he should be dishonest about the way he goes about it...Vic

I have to say very good information from VICC...I for one am worried about my surgical sympathectomy that I had done to me for my RSD I'am now reading about it more it is amazing to know in a few countries it is against the law to have this procedure done, makes you wonder. I have to now deal with RSD and TOS along with the symptoms surgical sympathectomy brings on wich another new list of things for me. Yes I agreed to have it done as I was told I was left with no options thanks to WORKERS COMP and being untreated for so long I had no quality of life this way the docs all said I had a chance and if it did not work than what? would I lose as they said...
I hope and pray for a cure I know it may happen or never it all depends on us and the medical field doing something about this. I believe BIG Ins. is fighting this tooth and nail knowing the cost of this to people and want to bury this or have doctors fight each other over this. Funny how it seems how we are made to look like we a crazy by some doctors, and even PT's all working for the Ins. company first thing they do is label us as slackers or say we are not trying hard enough in PT and of course we do harder and end up making it worse for us! doing the wrong PT that is orderd.
Finally we find a good doctor and that leads to more good doctors who understand what is going on and we start getting help, but we must fight for it and try to get it,I've had several doctors look as though they wanted to scream and or cry about my condition when they saw me all said the same thing SORRY, I said for what you did nothing wrong it wasnt you! but they said sorry still for what I would have to live with the rest of my life, with RSD and TOS with the surgical sympathectomy again saying what do I have to lose..I hope they get their act togather soon and start researching this it would be cheaper for them (INS.) in the long term if there was a cure or some kind of treatment used for us all.
I know it was long but it just ERKS me to no end that we are treated like dirt.
Nice post thanks, VICC and Hubby with RSD and every one else..
flippnout

I just have to say, for the record, that there are a lot of together people on this forum who are entirely supportive of the work of Robert Schwartzman, M.D.

I know "Kit Deluca" personally. I do not believe that she holds the views that Vicc would ascribe to her. Indeed, the CNN piece correctly states that the ketamine treatment coma has helped roughly 50% of the people who have had it. And yes, I was one of those many people who were told by Dr. Schwartzman that he could and would “cure me” when it didn’t pan out that way, but I don’t hold it against him. The fact was that I wasn’t an ideal candidate for the treatment, simple as that. But it doesn’t negate the underlying and evolving science.

I know that some feel otherwise, and that's their right, but this forum should NOT be understood to be a place that supports a unitary view that Dr. Schwartzman is a snake oil salesman.

There is a lot of science out there about the role of ketamine, not only as an NDMA receptor antagonist, but, in the piece posted by Roz earlier today, a drug that actually suppresses the production of pro-inflammatory immunological proteins that would otherwise develop immediately after surgery. See, http://neurotalk.psychcentral.com/sh...ad.php?t=13236 (Pretty amazing when you look at it that way, isn't it?)

Indeed, if you pay attention to the CNN piece, they are talking not just about ketamine, but other immunologically based treatments that were coming down the pike. I have seen absolutely nothing in the intervening half-year that contradicts that view.

Finally, I know that there is a view out there that hold that “I’ll stick with stuff I can understand.” I’ve got to say, coming at this from the perspective of someone who satisfied his science requirements in college by taking Intro Bio, Ecology and Astronomy (Space Rocks for Jocks), that it behooves each and every one of us to do the heavy lifting ourselves, because our doctors may not feel obliged to do it for us. Go out and buy Molecular Biology made simple and fun, D.P. Clark and L.D. Russell (Cache River Press, 2000) or Clinical Physiology made ridiculously simple, Stephen Goldberg, M.D., (MedMaster, Inc. 2004), and then start digging!

See you in the stacks.

Mike

Oh gosh, I remember Kit's description of her experience (actually someone else posted for her at the beginning of that ordeal) - what a nightmare, put me off ketamine coma (I stress coma) treatment for ever

I read Vic's post as ascribing his views to himself, actually. Do we have to have a "unitary view" here, can't we have amiable disagreements? I suspect quite a few of us might be bright enough to make up our own minds about things, and we might even be bright enough to understand science articles too!
all the best

Artist –

I never ever meant to suggest people didn't believe that they weren't thinking for themselves, so much that I just believe folks are making a mistake in ascribing to someone I had the privilege of meeting in a professional relationship (Robert J. Schwartzman) all of the sins, real or imaginary of the medical community.

And for that matter, who among us hasn't labored in an occupation for a good number of years where our professional views haven't changed over time? Yet what's going on here is that stuff is being pulled out against a man, as though every position he took over God knows how many years is being held against him as though it was yesterday, and then others are coming along and piling on him like he's the Anti-Christ.

Frankly, and at the risk of alienating some, I am at times left with the imagery of a bunch of town folk, storming the castle with torches and pitchforks. Let's see, if Schwartzman is Dr. Frankenstein, does that make me his monster?

Mike