Nice Article in March/April Neurology Now
 

My brother emailed to tell me about an article on RSD/CRPS in the latest issue of Neurology now, magazine.

Written by Dr Debra Gordon, M.S., it's interesting and well written.
Several things struck me.
67% of us consider suicide.
Avoid Nerve Blocks! They can cause even more damage! Wow!

A copy of this should be kept with you, and might become your "pal".
Especially when visiting a doctor who isn't familiar enough with RSD.

There is also a "black box" mention (not the negative kind) of "At least 20 clinical trials" including Dr. Schwartzman's in Philly. He is the gentleman who diagnosed me after 7 years of agonizing, frustrating pain and emotions. Which, of course, continue.

Only thing I found about the story somewhat annoying was the "necessary happy ending". It just doesn't end that way often enough.

I'm going to make a copy of it, scan it into my computer.


Pete
asb

I read it too
 

Thanks for mentioning this article Pete. I read it also along with 2 others in medical journals this month. It seems as though the medical community is becoming educated to CRPS/RSD. I recently purchased a book from Medifocus about RSD and it had some links to abstracts. Most of them were quite recent. In fact, I went to the hospital library (I work in a hospital) to see if we had those journals. We had one so I copied it and ordered the other two articles.

Since my diagnosis is only 3 months old I was going to have a nerve block late this month. But I canceled it because of what I read. I'm kind of scared to do anything.

My scanner is not working but I'll try to see if I can pass along these articles if anyone is interested.
Sally

Hi from Pepper
 

Hi, I'm very interested because I'm supposed to get my first nerve block this Wednesday..I thought they would help with the pain. What did the article say about this...Thanks, Pepper

Not so sure I agree with the opinion on the nerve blocks - my RSD was exploding out of control until I started getting them. I think my symptoms are slowly getting better after each one. I'm scheduled for my 6th in less than 2 weeks.

Is there an alternative treatment that is recommended that is supposedly better?

Thanks, Sandy

Hi Pete
 

Pete,

I would love to read the article.:) Once you scan it, will you email me a copy?

Thanks,:)
Dew

i would really like to know where i could get a copy of that is there anyway you can let me know thank you

I don't mean to sway your decision
 

Hi Pepper,
Please don't change your app't because of what I said. My rsd is only 3 months old and the pain is controlled at this point with Lyrica. I probably WOULD do a nerve block if my pain was out of control. However, this article (I don't have it in front of me) just said something about the long term effects of nerve blocks aren't known and the results are transient - is this right Pete? Therefore I'm not going to do any until I HAVE to. I talked with my pain management doc today and she agreed that I shouldn't do one until the pain level gets so bad the pain meds aren't helping or it starts to rapidly spread. Some people get excellent results, so if you're to that point go fo it! One of the things about rsd is that we all have different symptoms, treatments, and outcomes. And so far nothing works for everyone all the time.

Your physicians will guide you and should always include you in all treatment decisions. Please let me know if the block helps!
Sally

Article
 

Hi Pete,

Can you give us the link to the artical?

TY
Debbie

Getting nerve blocks are crucial treatment in the beginning. They don't cause damage when you get a series of them to begin with. You often don't get more than 4-6 at the start if they help. The danger begins when you keep getting them over a very long period of time. I'm not saying anyone should stop blocks if they help. It means the pain is still SMP. But you have to weigh the risk versus benefit if you start getting more than 20.

The "damage" they mention is to the ganglion the blocks are injected in when you get A LOT of them, as in 20 or more. I read that in the first year I got rsd when I was researching. The repeated inserting of the needle in the ganglion is what does it. Something most people also don't know is that in just 6 months after getting rsd, there is permanent damage to nerve endings in the body.

Thought I'd put this down because I do not want anyone canceling blocks or afraid to get them. There is NO danger of damage for most everyone who gets blocks because they rarely get so many.

Hugs,

Karen

For Anyone who would like,
I have scanned the article, and until it is available on the
neurologynow.com
website
I'll be happy to send it in pdf format (I don't think the magazine would mind),
if you email me,

just PM me,
and give me an email address you want it sent to.


I'll get it right out to you!

Pete
ASB

~~~~~~~~~~~~~~~~~~~~~~~~~~

Hey All!
I can't seem to give the link yet,
because, it's not yet up.
However, I have it scanned, and if you email me, I will send it right along.
Asap!
I know how these things are.

Hopefully, all of us here realize and understand, that in a way, we're sort of "test dumbies", not dumb, but when a doctor treats us, we'd better be dam well sure to report back EXACTLY what the effect was/is on our bodies! (Or, how else may they study the disease?)

The ONLY thing I can say about the nerve blocks is to quote the article.

"One approach that Dr. Oaklander says patients should avoid is the nerve blocks that [*****] underwent. Not only is the relief temporary, wearing off when the anesthetic wears off, but repeated nerve blocks can result in even more nerve damage."

I think it's imperative, to take this short paragraph in the context of the entire article.

I've had nerve blocks, but they were ONLY to evaluate if sympathectomies might be indicated!
They were not!

It is only MY understanding, (not quoting this article) that nerve blocks are temporary, and diagnostic measures. Not curative.

Please, read the article,
I am NOT a doctor. I am a Sufferer, for 26 years.
I've have everything but the lidocaine "Coma", and have been advised, that I'm too far gone for that.

I wish you all well, and advise that
You ALL count your Blessings!


Love to all,
Pete
ASB

PS
AGAIN
just email me for a pdf of the article.
I've taken the time to scan it.
I'll sent it to you.
I will NEVER send you any Spam, or use your email addy for any other use.

Pete
ASB

Pete...a teeny FYI, this is a public forum. Anyone can read and get your email addy. It can also be picked up by search engines...you could get tons of spam by posting you addy. You might want memebers to PM you.

Thanks Curious for that.

I do have membership in many communities.
This particular email addy is very private.
I thank you for your warning.

So, if anybody wants a copy,
tell me,
then I'll take it down.


Thanks again curious.

And, I don't make ANYBODY's email available.
You can PM me!
I guess that's the way I should have went....

pete
asb

Hi

I got the article from Pete last night (thanks again Pete!)

(My interpretation only) ..

I think that the audience that the author was directing her recommendations towards was more the adolescent and teenaged years rather than adults. I have read about the intensive occupational therapy program before that she discusses, where kids with full body RSD have successfully been rehabilitated after a few months of treatment. Her article didn't address this approach with adults, just older children.

I know that the blocks that I have had have helped me, I just wish that I could have had started them sooner than I did - my RSD spread because mine were started too late. Now I am starting to have serious trouble with my feet.

Sandy

Sorry it's spread on you Sandy! :hug:

Nerve blocks should never be used as a diagnostic tool. They only work if the pain is still SMP, Sympathetically Maintained. If the pain is SIP, Sympatheticallly Independent, they won't give any relief at all. This is why as a diagnostic tool it is of no use. There are some docs out there, unfortunately, who still use it this way. They see a patient get no relief and say "Oh, well you don't have rsd then!". NOT true! All it means is that patient's pain is SIP. I've read many papers that say blocks shouldn't be used diagnostically.

This was the case with me. WC decided to make me get a block over a year later. I got no relief at all. As a matter of fact, I was in a horrific flare for over 2 months because of it. I have rsd and I can only be very thankful that my doc at the time knew better just because the block didn't do anything for me.

Right now blocks are the first thing to be done simply because it interrupts the pain signals of the nervous system. It doesn't work for everyone but at least there is a little chance it may lead to remission for some if done in the first few months. I know someone who did go into remission because she got blocks.

I think you mean the ketamine coma pete. There are lidocaine infusions but it's not the same thing. I didn't want anyone to get confused. :-)

Hugs,

Karen

Thanks Karen!

What little I know about the nerve blocks, was that Dr Schwartzman used them on me, and when I say "diagnostically", I mean, that he gave me a nerve block, which took, it was given in my neck, and half of my face, and one arm went numb, but it did nothing for the pain.
So, he knew a sympathectomy would be useless. (That's what I meant by diagnostically, to show if a sympathectomy is warranted or not). He KNEW I had RSD.
Please, Know that I'm NOT a doctor! I've just been spending half my life with them. Hah!

Later, as the RSD spread from my left arm, then mirrored to my right, then it spread to my feet and legs, which I suppose is now full body.
Then, he had me get the nerve blocks in my low back. I don't think they were the same type of "blocks" though. I don't recall the same "Numbing effect" that the nerve blocks had on my face and arm. I just don't recall a numb leg. I think that second block, was more "treatment" oriented, rather than a "temporary, chemical induced sympathectomy".


Anyway, I wanted to say that I've sent out many copies of the article.

If you requested, but did Not receive it, kindly PM me again with your email address?

Or, if you'd still like to get a copy, PM me and do the same.
I'd be happy to send it out.

Pete
ASB

Karen -

Not sure that I completely agree. While I too had one arrogant doc in LA tell me strait out that I didn't have RSD when I failed to respond to "one of my [his expert] blocks" a year into the thing, I had a profound response to my first set of blocks, a few months after getting CRPS in the summer of 2001.

It is, I believe, common understanding that in the acute stage, when the pain is sympathetically maintained, that the blocks do the most good, and should be used. I know that in my case, the fact that I responded well to blocks 3 months after becoming ill was significant information for my future treatment. So should blocks be used diagnostically at 3 months? For me that information was incredibly useful. I think the point should be that if they are to be done for a diagnostic purpose, they have validity only within a narrow window of time, one that's sadly lapsed before many people are referred to someone who can make the diagnosis in the first place.

Mike

LOL Yeah, we just loooove spending our life with docs don't we? It's what we all aspired to I'm sure. *hear the sarcasm dripping from the words?* LOLOL

So your pain was SIP when you got the block too. I hadn't pm'd you yet for it but I'm going to. I seem to have a compulsion to collect medical articles and other stuff. LOLOL They are always interesting to read. At least I think so. :-)

Hugs,

Karen

Well,
C'mon
Ms Karen!

Just PM me!
I'd love to send it out.

And, this goes for anyone else.
There is NO NEED TO BE SHY!
(I Really have no need for your email addy, other than to send you this).
I'm not a spammer!
(Just ask any of my 2,500,000 plus email buddies!) joke!

Pete
ASB

That's what I mean though. A doc who says you don't have rsd just because you didn't get pain relief from the block. You did at first and then didn't because the pain had gone from SMP to SIP. This is what docs, especially those like the one you had in LA, need to learn. It doesn't mean we don't have rsd, it just means the pain is now independent.

I agree it is, sadly, a very limited window for some. Being we are all different and our bodies function different, some have the pain stay smp longer than others. I've forgotten if I read how fast yours spread or not? I know mine must have gone sip rather quickly. I know others spread faster than I did, but for me 11 months full body. Even if it takes years to spread it can still seem like the blink of an eye. It's our individuality that prevents finding an effective treatment because we don't react the same.

Hugs,

Karen

I read something interesting, about axon damage in the article! In CRPS patients there appears to be axon damage.

Years ago, when I had an EMG, they noticed that I had axon damage somewhere and they could no longer trace it. (Will need to dig up the test for the right wording.) There was a giant question mark alongside the results, as if they couldn't make out what it meant.

Now I know!!!

Recommending this article to everyone!

Here it is, we had lots of good comments when I first submitted this. (I was a TOTAl newbie then!)
It's good in that it gets some more recognition out there, but as I noted in the very first statement (post), the "Happy Ending Syndrome" for a magazine article...

Pete