Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-26-2007, 06:25 PM #21
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"Hey, Jen! Wow..$312.00 for a stellate ganglion block?? highway robbery, is what that is!! darn! Jen, I hope and pray that you do get approved for SSI too! Did your Dr. wean you off your xanax? that is a really tough benzo to get off of! I was on the 1 mg. and I asked my Dr. to put me on the 0.5 mg. So, I am on that 3 times a day. I also take Vicoprofen(for pain) and EffexorXr75mg. once a night. all the hype of that lunesta and here it's making ya groggy. boy, they sure do lie on their commercials, hu?? Jen, excatly what kind of pain did you experience from your SGB? Maybe your P.D. didn't get it in the right spot!! did you get the droopy eye? stuffy nose?? Yes, I had a MRI of my head, and neck I also had a bone scan of my wrist, hand and shoulder. I am being sent to another specialist for another MRI of my shoulder. I believe this pain in my shoulder is caused by the herniated disk. Could be RSd/ combo of both. Oh, man, I use my heating pad too all the time!! And A good hot bath of epsom salts. ahhhhhhhhhhhhhhhhh.. Well, I am going to go and veg out for a while. take care and have a great weekend, Jen Love, Desi
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Old 05-26-2007, 06:28 PM #22
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Oh and I forgot, Jen I take Neurotin also twice a day (300) mg. once in the afternoon and again at bedtime. This helps take the edge of those excited pain nerves!! LOL.. Desi
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Old 05-26-2007, 06:34 PM #23
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Originally Posted by jennyk38 View Post
hey desi,

I forgot to ask you if the emg made your rsd flare up? thanks again, jen
Oh, ya.. I sure do believe it did!! I was so bad after this. But I had to have this done fiirst or no surgeon would do the Carpal tunnal surgery!! I will NEVER EVER have this stupid test again.. Ever.. I hated it!!!! Desi
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Old 05-26-2007, 07:35 PM #24
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hey joan,

don't know if i've talked to you before? this neurontin makes me goofy
also didn't get any sleep last night, i'm sure you know what i mean. anyway, first of all when i had the stellat ganglion block i wasn't in any pain at the time(i had already started tx with clonidine patch, etc and was having a "good day") i told the pm but he said he still reccomment that i have it done as scheduled. he didn't use fluoroscopy and when he did it i would rate the pain a 9. it just felt like he was digging around in my neck with an ice pick. i really can't explain it any better than that, he also hit the nerve to my hand twice and it hurt like hell! after he was done he looked at me and said my eye was droopy so he "got it" but i'll tell ya what, when i got home an hour later my eye was not droopy nor was it red, i did not get any warm feeling to arm, hand, did not get hoarse or stuffy. i really don't know whether he got it in right place and i was just diagnosed a month ago(even though i've had symptoms for at least a year) i know how important it is to get the block right. Now instead of doing another stellate ganglion block he wants to do a cervical sympathetic block, also without fluoroscopy and i just don't know if i trust him to do it. he keeps pushing scs but i think it's too soon. sorry to go on so long, hope you don't mind. well, thanks for the reply, any and all advice, support is appreciated. jen
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Old 05-26-2007, 07:49 PM #25
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"Hey, Jen! Wow..$312.00 for a stellate ganglion block?? highway robbery, is what that is!! darn! Jen, I hope and pray that you do get approved for SSI too! Did your Dr. wean you off your xanax? that is a really tough benzo to get off of! I was on the 1 mg. and I asked my Dr. to put me on the 0.5 mg. So, I am on that 3 times a day. I also take Vicoprofen(for pain) and EffexorXr75mg. once a night. all the hype of that lunesta and here it's making ya groggy. boy, they sure do lie on their commercials, hu?? Jen, excatly what kind of pain did you experience from your SGB? Maybe your P.D. didn't get it in the right spot!! did you get the droopy eye? stuffy nose?? Yes, I had a MRI of my head, and neck I also had a bone scan of my wrist, hand and shoulder. I am being sent to another specialist for another MRI of my shoulder. I believe this pain in my shoulder is caused by the herniated disk. Could be RSd/ combo of both. Oh, man, I use my heating pad too all the time!! And A good hot bath of epsom salts. ahhhhhhhhhhhhhhhhh.. Well, I am going to go and veg out for a while. take care and have a great weekend, Jen Love, Desi
Desi, i agree about highway robbery and pharmaceutical commercials being a bunch of bull! just please keep in mind that even if your mri doesn't show a tear it can still be torn, i am living proof! although it sounds like you have a lot of other things going on that could cause it. it is hard for me to explain the pain that i had with stellate block. it honestly felt like he was digging in my neck, i would rate the pain a 9! he also hit the nerve to my hand twice and seemed surprised about it. he said my eye was droopy but desi when i got home an hour later it wasn't droopy or red, i wasn't stuffy, i wasn't hoarse and i didn't get any warm feeling in my arm or hand. also, i was having a "good day" and not in pain when he did the block, i told him this but he reccommended to go ahead as scheduled? now he wants to do a cervical sympathetic nerve block also without fluoroscopy and i just don't have a good feeling about it. he also bumped up my neurontin to four times a day and i don't think i'm tolerating it well. i am going to talk to him about xanax on tuesday because i'm a mess without it. i just need it at bedtime, i don't see what the big deal is! if only they could walk a mile in our shoes he also wants me to have emg to rule out nerve entrapment and if my work comp benefits are reinstated i'm sure i'll have to have one i had a nasty flare up after ganglion block and i figure the emg will do the same. well, i hope we both get some sleep tonigh, good luck and talk to ya soon, jen
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Old 05-26-2007, 11:20 PM #26
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Desi, i agree about highway robbery and pharmaceutical commercials being a bunch of bull! just please keep in mind that even if your mri doesn't show a tear it can still be torn, i am living proof! although it sounds like you have a lot of other things going on that could cause it. it is hard for me to explain the pain that i had with stellate block. it honestly felt like he was digging in my neck, i would rate the pain a 9! he also hit the nerve to my hand twice and seemed surprised about it. he said my eye was droopy but desi when i got home an hour later it wasn't droopy or red, i wasn't stuffy, i wasn't hoarse and i didn't get any warm feeling in my arm or hand. also, i was having a "good day" and not in pain when he did the block, i told him this but he reccommended to go ahead as scheduled? now he wants to do a cervical sympathetic nerve block also without fluoroscopy and i just don't have a good feeling about it. he also bumped up my neurontin to four times a day and i don't think i'm tolerating it well. i am going to talk to him about xanax on tuesday because i'm a mess without it. i just need it at bedtime, i don't see what the big deal is! if only they could walk a mile in our shoes he also wants me to have emg to rule out nerve entrapment and if my work comp benefits are reinstated i'm sure i'll have to have one i had a nasty flare up after ganglion block and i figure the emg will do the same. well, i hope we both get some sleep tonigh, good luck and talk to ya soon, jen
Jen, I say go with your gut feeling. now, this is just my opinion. There should have been NO digging in you neck!! He sould have had your head tipped back on a thin pillow, felt with a gloved hand, finger just where he was aiming that needle, Jen!! EMG is not a good idea with us RSD patiends as it aggravates the pain more. There should be another sort of test that he can do maybe?? still, Jen this is my opinion. If this was me, I would fire his ***** and get another P.D. there!! take care my friend, and please let me know how all go's?? "Epsom salts take me away" LOL Gentle hugs goin' out to ya Jen. Love, Desi
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Old 05-26-2007, 11:37 PM #27
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Originally Posted by jennyk38 View Post
hey desi,

I forgot to ask you if the emg made your rsd flare up? thanks again, jen
Jen, sorry I didn't answer this, I just now seen this post.. duh! I had the EMG to determine if I had Carpal Tunnal syndrome.. and I wish to God I never would have never had the EMG or the surgery! That neurolisist that did those tests, didn't think! I fired him and am going up to Cleveland Clinic. My p.D. and ortho surgeon is trying to bump me up there faster. I have to wait until Aug. 16th! So, their tying their best to get me in sooner. I hate this wait!!
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Old 05-27-2007, 07:51 AM #28
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I wouldnt put a whole lot of stock in the EMG really. When they did the EMG on me they wanted to see if there was nerve damage. They found plenty, and called it classic peripheral neuropathy. Then he did the needle test and said for sure I have L5 S1 compression. Classic case!

They sent me to the neurosurgeon for back surgery. The surgeon had an MRI done, and then told me that there was nothing wrong with my back. So no surgery. At this point the 2 doctors, neurosurgeon and neurologist were having it out about the different results.

Finally it was settled that it is RSD. The lack of blood to the leg for 7 days caused the nerve damage that looked like back problems on the EMG. MRI saw no problems what so ever.

So they can say after the EMG oh yes there is a pinched nerve, or whatever. But the MRI will prove it. RSD can and does act like nerve problems, even classic ones like PN.

Actually I was relieved to know it was something, cause I was really tired of the "it's all in your head" remarks.
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Old 05-27-2007, 03:55 PM #29
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Allen, Any doctor who tells you;"It's all in your head "needs to feel what each and every one of us are going through.. ten times over! Love, Desi
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Old 05-27-2007, 05:05 PM #30
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Red face Maybe I can help a bit?

Hey Everyone....
Sorry...but I just felt like I *had* to jump in here. I hope that no one minds.

First...EMG's - They suck. No 2 ways about it. They are done as a diagnostic tool to help rule out OTHER things, and therefore help in the dx'ing of RSD (because if they can't find another reason for the pain...such as nerve impingement or entrapment, then it helps to point to RSD as the problem). I have had ONE and ONLY ONE of these horrid tests done, and don't plan on having any others done in the future. I have had the Nerve Conduction Test done at least a couple of times, though. It is different, as it doesn't involve having to have needles stuck into you. They use sticky electrode pads to try to accomplish the same type of thing. It is just that an EMG is supposed to be more sensitive or whatever. Never Conductions aren't that fun either, but not nearly as bad as the EMG's. At least in my opinion.

Now...about the SGB's and what should and shouldn't happen when there is a GOOD block. You SHOULD get a droopy and bloodshot eye. That is called "Horner's Syndrome" by the way. You SHOULD get a kinda stuffy head cold type feeling (the stuffy nose thing you all are talking about). You SHOULD have a hoarse voice, as they are working super close to the vocal cords, and those things don't like to be messed with (or around) at all. Hopefully you should also have a nice warm (meaning, a more normal temp. My parts are always cold, so I look for a nice warm thing going on after any blocks), more normally pink colored limb (not so much of the weird colors or the mottling going on), and some type or reduction in pain....and possibly even swelling (if you are having any problems with that). The Horner's and what not shouldn't last too long (I think that the longest I had them last was about a day?), although it is a possible rare side effect to have happen permanently. This is all stuff that your docs should have told you. The more normal coloring and temp in the limb should last a bit, as should any reduction in pain (notice that I said "reduction" and not "relief" there....because even some reduction in pain levels is a GOOD thing....even for a short period of time), although they might only last a few hours. The fact that you had them happen at all is a GOOD thing (if you did. If not...try again! Especially if you are in the very early stages here with RSD)!


Personally, there is NO WAY that I would have ANY kind of block done without my doctor using Fluroscopy. No way. I am just not comfortable with anyone "feeling their way around" to try to "find the right spot". Nope. Not having anything to do with that monkey business. The fluroscope allows the doc to better SEE where he is going with the needle that he has so very close to your spine and spinal column. I don't care HOW great a doctor is....I think that EVERYONE can use all the help that they can get, and that they should use the tools available to them, and not just show off big egos by saying "Oh. No. I don't need to use that, I can FEEL my way around." Yeah..right. Whatever. It isn't HIS Neck or Back that is having stuff stuck into it now, is it?

But, that is just my opinion on all of that.

There ARE different kinds of Sympathetic blocks. I have had SGB's done, but my doc found that doing Thoracic Sympathetic Blocks worked better to help my upper body RSD problems. I still do have the Lumbar Sympathetic Blocks. I don't know about Cervical Sympathetic Blocks.....as I thought that was basically what an SGB was/is? Maybe he is talking about doing something from the back of the neck, instead of the front? I would definitely ask LOTS and LOTS of questions about this procedure he is talking about doing. Things like EXACTLY how it is done, and exactly what the name of it is...and EXACTLY what levels of the Cervical Spine he is talking about doing the block at...those kinds of things, Before I let him do anything. I would also start looking up BUNCHES of stuff about it. That is what I did when my doc wanted to change from the SGB to the TSB. But, he was right; it has been best for me (and yes...as you could probably already figure out, he does this all under the fluroscope. He does ALL of his procedures using the fluroscope).

I hope that maybe this has helped to answer some of the questions that were going on in this thread? It looked to me like there was a fair amount of confusion going on here. I just thought that I might be able to help shed a little bit of light?

I hope that everyone is feeling a bit better today...and that you all are having a good weekend!

Take Care
Jose

PS...Closed MRI's are done in the "tube" thing that is so very loud, and that some folks have problems with because of it being such a tight and confining space. Open MRI's are just that; Open. There is no "Tube" thing, and this is what they send folks to that would otherwise have problems with the tighter CLosed MRI machine. I hope that I helped to make that make some more sense too? I have only ever used the closed mri, myself, so I don't know anything about either one giving better pictures than the other. Maybe someone with experience in that matter will post to help with that part? I hope....
again,
Jose
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