Bumped back!!!!

Desi · 06-13-2007, 10:14 PM

Hi Mary.. Hi Jennie.. Mary, I sure do hope things work out for the best too. I finally fell asleep at 7:30 the kiddies (My daughter had a sleep over) and they were up all night! got up at 9 this morning(The kiddies that, is) I thought they would sleep in longer! nope! anyway, thanks!! Jennie,Good idea about going on the RSD board and finding RSD. I will "check that out" wonder if Ohio has some better ones than Clev. All everyone keeps telling me, is Clev. is the best place to go. If I have to wait I will.. If my RSD spreads, I'll just show up at the ER center like that other doc. told me to do and insist I need HeLLLLLLLLLLLLLLLLP! LOL

Thanks for the info again Jennie!! Gentle hugs Mary

Gentle hugs, Jennie

Love, Desi

junk4myemail · 06-13-2007, 10:48 PM

Call EVERY day and ask for a cancellation. I was able to get in to my doc by doing that. Make sure you speak to someone each time. As silly as it sounds, people do cancel.

Hugs, and good luck.

Desi · 06-13-2007, 11:06 PM

Quote:

Originally Posted by junk4myemail

Call EVERY day and ask for a cancellation. I was able to get in to my doc by doing that. Make sure you speak to someone each time. As silly as it sounds, people do cancel.

Hugs, and good luck.

"Good idea, good, idea.. Christine!! When I first spoke to them for the very first time, I did say,"If you have a cancellation, please call me"! Clev. clinic is a good hospital and there are many on the waiting list. I will, however will call each day and bug the hell-o outta them to ask each day of a cancellation!

Thanks Christine, your a gem! Love, Desi

lostmary · 06-14-2007, 07:32 AM

Desi

Here's something I've tried when desperate. Talking to nurse/recep. etc, when they tell you that there are no openings, just say something like...Hummmm no openings hu? what is your favorite chocolat? It gets them every time. that way when you call the next day joke about trying to find some that they like. It will keep you in their mind when there is an opening, and they would tend to call you first if they can. Just a thought
Mary

Desi · 06-14-2007, 01:54 PM

Quote:

Originally Posted by lostmary

Desi

Here's something I've tried when desperate. Talking to nurse/recep. etc, when they tell you that there are no openings, just say something like...Hummmm no openings hu? what is your favorite chocolat? It gets them every time. that way when you call the next day joke about trying to find some that they like. It will keep you in their mind when there is an opening, and they would tend to call you first if they can. Just a thought
Mary

LOL Mary,

Your a "Hoot" ha! ha! Ha! what is your fav. chocolate. Pure genius, you are... Pure geniue! I would never have thought of this one.. ok calling now.. Love, Desi

Vicc · 06-18-2007, 09:51 PM

Hi Desi.

When you first posted this I knew I was going to reply; but I tire so easily I was thankful I had lots of time to write this.

I have been here at NT since November, 2006, and before that I had been at BrainTalk for about ten years; I've read lots of posts over the past decade, and yours isn't the first to show how much you hope that Stanton-Hicks' Clevelend Clinic (or for others, doc Schwartzmann) would be able to do what no one else can: Help you.

I have yet to read a post from anyone who reported waiting all that time to see these RSD gurus, and said they actually helped them. Yeah, a couple of people here talk about doc S and ketamine, but you don't have to see one of these guys to get ketamine. You can get it sooner, and cheaper, by seeing someone else who sells ketamine therapy.

And I didn't keep count, but I know that most people who have tried ketamine and then posted here, have said that it didn't help them. It isn't a cure, its just the most powerful and longest lasting anesthetic available; and that isn't good enough to help most of the people who've tried it.

The main reason I'm posting, however, is the experience of someone at BT, who we didn't get to know very well because she killed herself after hoping the Cleveland Clinic would actually be able to help her.

They treated her badly; the jerk doc she saw told her she was "too young" for opiates. What the Hell does that mean? If you have severe pain and opiates will help, you are not "too young". But that's what this asshole told her just before she took her life.

I don't think you will go there, learn they can't help you either (they don't really help anyone), and you will then go home and kill yourself. I do think, however, that you're expecting more than they can deliver, and so I'm writing to warn you against getting your hopes too high.

Someone else posted that while they were waiting their symptoms spread to other parts of their bodies; the implication being that if they had been seen sooner, that might not have happened. Well, the truth is that no one -- not S-H, not doc S, not anyone -- has a clue about why sypmtoms spread and none of them know how to stop it.

If you go to the Cleveland Clinic and tell them your symptoms are spreading, they won't be able to do anything to stop it.

They know how to do sympathetic blocks, and in my ten plus years at these forums I have seen countless posts telling newbies that sympathetic blocks can stop symptom migration; but they can't.

Nearly everyone here has had blocks, and just about all have seen their symptoms spread. I recall seeing one person who reported that blocks actually stopped their symtoms from spreading. Just one.

Telling newbies to get blocks to prevent symptom migration is an urban myth. We used to call this advice "old wive's tales". They don't stop it, but everyone wants to believe they do, and; "If I had only gotten blocks soon enough, I wouldn't be this bad".

Someday I may write a post on what is scientifically known about how symptoms blocks work, but not in the near future; there are other facts about RSD I need to write about. Meanwhile, I will tell you (and everyone else) that researchers have demonstrated that blocks prevent normal SNS functions. They stop the SNS from telling the adrenal glands to release adrenaline. How do I know that?

Researchers have taken patients right after a block and injected norepinephrine (adrenaline) below the site of the block, and in every single instance, all of the pain relief from the blocks vanished. Obviously, adrenaline has a lot to do with RSD, but there is no evidence that blocks prevent abnormal release of adrenaline; apparently, normal amounts of adrenaline are more than enough to cause our pain.

So, ketamine won't fix you; it might relieve the pain for a while, but it doesn't work for most people and it doesn't keep working for those it does help. Blocks can relieve pain, and that makes them useful, but they won't stop symptom migration.

S-H and doc S have amazing reputations. Truly amazing reputations, considering the fact that neither one of them has ever really helped an RSd patient recover from this disease.

All I'm saying is please don't expect S-H or his people to help you in any meaningful way. They can't. If they knew how to really help RSD people, I'd be waiting in line to see them, and other doctors would be copying what they do.

If you've read some of my others posts, you know that I don't carry a message of hopelessness: Right now, I may really be the only person in the world who knows what RSD really is, but the "experts" can't hide the truth forever.

Anyway, I'm not the only one; I've read journal abstracts from two physicians who suggest that RSD might really be an ischemia-reperfusion injury (IRI). There will be more articles like this from more doctors, and someday all this "nerve damage" nonsense will finally be filed where it belongs.

Speaking of "nerve damage" nonsense, I'm just about finished editing a post on that subject. It will explain why nerves can't do what the "experts" say they do in RSD. It will also explain why so many apparently sane doctors buy into this "nerve damage" nonsense.

There is hope, my friend. You just won't find any at the Cleveland Clinic. (If they offer you blocks, however, go for it. Anything that relieves the pain that well, even for just a little while, is worth trying)...Vic

06-18-2007, 11:43 PM

Hi Desi,

Just to follow up on Vic's post, here is a previous thread we had about this, you might want to take a look:
http://neurotalk.psychcentral.com/sh...ad.php?t=14988

It might help to put in a search for "Cleveland Clinic" on the forum (use advanced search, you can specify the RSD forum, and "posts") to see other people's experiences of the clinic,

all the best

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