NeuroTalk Support Groups - SGB & Bilateral LSB

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - SGB & Bilateral LSB (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/203330-sgb-bilateral-lsb.html)

Quote:

Originally Posted by AZ-Di (Post 1066682)

VRae, did they do the SGB & LSB proceedures at the same visit?
I saw my P.M. Dr. today for consult and if it comes to that for me
she said absolutely not in the same visit for me b/c too much toxic
meds?

Hi Di,

My PM doc did not originally want to do this either, but after I went to see my neuro doc and while there he called my PM doc and because my spread is so aggressive they went for it. CRPS is taking me over from head to toe. We had to do something quick and we were kind of at the end of the rope with regular pharmacopeia. Perhaps it is this toxicity you speak of that is wreaking havoc on my guts.. perhaps it is CRPS... maybe its just all of it combined which is what I am inclined to believe.

Thank you for sharing this with me Di! I hope you're doing as well as can be as and getting to splash in the pool with the grandbabies when you can! :hug:

Quote:

Originally Posted by Brambledog (Post 1066700)

Well done Vrae :) Mindfulness meditation, they are on YouTube (find a voice you like that calms you) for free. The body scan is the one I use most...

I will definitely check this out for my pre-game activities. During the procedures I usually just put on my favorite songs that make my soul happy. I remember the first oh 60 seconds and about the last 60 seconds of what's playing in my playlist when the get me up. I find myself guessing from length of played music that I'm in there about 15 minutes. The versa anesthesia they're giving me must be working too, thank goodness! :wink: It must be why I keep going back! lol :D Makes me look brave. Which is interesting because without music I remembered SO MUCH MORE!

Quote:

Originally Posted by Vrae (Post 1066674)

Let’s see; today is treatment/week #3. :D I no longer refer to them as “Beachy Tuesday” (sorry Nanc .. lol) My husband and I are now calling it “Heroin Tuesday” (aka HT). I mean that is what they are giving me a shot of along with the lidocaine down my back/legs and down my neck/arm so I feel it is more accurate. :rolleyes: It feels like what I am trying to get over. I just couldn't do these darn treatments without sedation. I wish I could though. Such a catch 22!

This week's blocks were so much better than last week. What do I mean by that? Well, for starters it worked MUCH better. My eye drooped. Last week, no droopy eye and it didn't work very well. I am learning that my "Zen" state of mind is making all the difference in how much pain I feel during the injection, how much relief I feel from the injection and just overall how it goes. I think people have been saying this for years. I've been half heartedly listening until now. Wow.. yes.. I'm listening! oh and to my music too! :boy(music): This is me during an injection and makes it all sooooo much better. Like I can't even explain in text how much better. The other thing too, if I go in tired, this works with the sedation and Zen. Drift off to that happy place. I have ask to be put on a standing order for Zofran w/ my injection. I just don't do these drugs well. I did a pill Zofran on the way home even... ugh!

So I am struggling with diarrhea with these treatments... Just oh so sexy hu? :o I think it's probably the Fentanyl, but hell who knows. That and today's treatment I am struggling with feeling so nauseous. I have taken regular scheduled doses of Zofran to combat and that is working. This is becoming a regular issue. :(

Oh and tonight I broke off part of my tooth! :eek: yay! something else to fix and spend money on. I yi yi!! :mad:

The good news (yes, there is some) is my legs are responding, at least from a sedentary state they are down to about a 2-4 so that is FANTASTIC! I'm ready to get those moving but my upper half won't cooperate. The arm, upper back & now torso sides & some of left arm are being somewhat stubborn. Today was good. Last week was not. idk.. well see. I'm trying to remain positive and hopeful and trying to keep psyching myself up each week just to keep going and stick with the plan.

I have a hard time keeping up on here while I'm doing this. Hope you guys/gals are doing okay!! :hug:

Take care, Vrae

Hey Vrae! No apologies necessary on no longer having "Beachy Tuesday". I am happy that this weeks procedures went better than last weeks. I know that has happened to me in the past. We would go thru all that and no droopy eye...ARGHHHH! Then the next week a droopy eye...YAY!!!!! I agree with you, I think being relaxed vs tensed makes a huge difference and sedation will definitely help you get there.

Sorry your innards are all torn up, hope that improves soon! I agree that it is probably thhe combination of it all too.

Been thinking about you, so thanks for the update :) Take care of yourself!!
Nanc
:hug:

Quote:

Originally Posted by Nanc (Post 1066733)

Hey girl!

How are you?! Your thoughts mean so much to me since you and like AZ-Di have had so many of these; I really look for ANYONE's feedback that's had lots of these to let me know if I'm on the right track. I'm NOT looking for anything negative or scary, just fyi for any new readers out there. I can dream that up all by myself lol and I have a vivid imagination :eek: So far.. am I the only one we know of that's had three injections sites? Surely not... I am also wondering if anyone has ever done all four limbs at the same time? I know my PM would probably say oh hell no, because he originally told me he only would do two sites, then after he talked with my neuro doc he pushed it to three. Curious. :confused:

Please don't get me wrong, I love all the support I get from our NT group!

Nanc, I wonder if I should rotate my SGB even though all my symptoms are on the right. So far all my SGB's have been on the right. Like this week I had a great response, and droopy eye and the whole bag of tricks.. last week sucked and no droop.. should I gamble and have them hit other side or talk w/ him about a gamble? just wondering if you ever tried that. I do have symptoms in my left arm. Not nearly as bad (yet).

AND what the hell kind of block do they give for it going down the sides of your torso? I had a really bad flare on Saturday in my right arm. Worst yet. Left arm joins in the fun. Then oh great.. it starts running down the sides of my torso, omg! I think it might be called Ketamine. <sigh>

Anyway, I feel pretty good today if the tummy and tooth or dentist (GOD I HATE, DESPISE, LOATHE.. the Dentist) don't get me down. Wonder if I can take my headphones in there. I am super sensitive to sound(s) since CRPS.

Anyway... how have you been??? I hope you're okay! :hug: Vrae

Quote:

Originally Posted by Vrae (Post 1066777)

First of all, I have to say I love your "edit" reason...I too suck at typing :rolleyes:

With all the SGB's I had, no two were the same. Meaning the results were never exactly the same, the soreness, etc were never the same...I really think that is normal, frustrating, but normal. I never had other blocks done at the same time they did SGB's but I have had multiple blocks in my back/neck (cervical) at the same time. If you are having CRPS symptoms on your left side, I would ask the dr about rotating the SGB's. I have never heard of anyone doing both right and left at the same time...I think that is too risky, so rotating might be best. One PM dr I was seeing did a series of 6 on the right side and I was beginning with symptoms on the left side. The dr said he would do the left side when we finished the series on the right. When the time came, he didn't want to do them...said it wasn't RSD on the left. Well guess what?? It was!! So by the time I got with a new dr and got him to do them, they didn't help...ugh! This is why I would say to go for it, but if they are not CRPS symptoms that you are having on the left, then just keep going on the right. You are a brave girl doing this and sticking with it. It definitely takes several to see if they will help and more to make it long lasting. I do think that you are on the right track!

I am not sure what kind of block they can do or if there is one for anywhere in the side of your torso, but I would be curious since I have issues there too. I know the SGB's can go as far down as your chest, but that is it.

I would take your headphones with you to the dentist, if they have a problem with it then they will tell you! Good luck there...I hate going to the dentist too :(

I am not doing so well here lately. My RSD and IC are both flaring up big time! I went this morning for a special EMG to test me for myasthenia gravis. The results were abnormal (he said the nerves and muscles do not communicate with each other properly) so I need to go for an additional test next Thursday. It is looking like it is MG, but we shall see. This mornings test really flared me up :( On top of that, we are having awful storms.

Take care and hope your tummy issues get resolved soon too!!
Nanc
:hug:

Quote:

Originally Posted by Nanc (Post 1066792)

I am not doing so well here lately. My RSD and IC are both flaring up big time! I went this morning for a special EMG to test me for myasthenia gravis. The results were abnormal (he said the nerves and muscles do not communicate with each other properly) so I need to go for an additional test next Thursday. It is looking like it is MG, but we shall see. This mornings test really flared me up :( On top of that, we are having awful storms.

Take care and hope your tummy issues get resolved soon too!!
Nanc
:hug:

Well hells bells Nanc! I am so sorry about the test, storm & flare.. good grief charlie brown. And possible MG... oh no Nanc! That's just insult. I wish I could give you a big ole hug hon! I'm picking up my daughter from school but will reach out again soon. Pls pls pls keep me posted on the MG.. pls?

Quote:

Originally Posted by Vrae (Post 1066811)

Thanks Vrae, you are such a sweetheart :hug: Look forward to hearing back from you later. I will keep you posted about the MG tests,, etc...

Vrae I'm sure is been real hard for you all together like Nanc I wish you both the best.
When I had my block,lumbar,one dr recommended at least three week apart from each other to avoid flare ups,hope you review that win your dr,injecting is always a trauma,I'm sorry everything is taking longer but for sure you will be ok,both of you,don't worry about anything else but you girls,blessing and my prayers are always in your way ,relax if you can,try again I will mention tibetan singing bowls,really relaxing,hope you the best,from Jesika :hug:

How Many is Too Many?

So I just did #4 of 6. My neck & upper back are sore. This one hurt. But I’m responding so that’s good, I only wish it were for longer period of time in my right arm. Interesting how my legs are responding longer than the distant spread of my right arm, but the right side of my body is where this all began.

Anyway.. So I was here http://rsdfoundation.org/en/en_clini...eticBlockVideo
And was reading in Section 5. the following: Some patients will experience a "booster effect" with each sympathetic block, i.e. each successive sympathetic block in the series provides greater and greater pain relief and improvement in exercise tolerance. The maximum sustained benefit from a series of sympathetic blocks is usually apparent after a series of 3-6 blocks. Even if the original site is unresponsive to sympathetic blockade, future exacerbation of RSD / CRPS symptoms at the same site or at a distant site may be responsive to 1-3 sympathetic blocks. THE GOAL IS ALWAYS TO TREAT BUT DON'T OVER TREAT.

Okay, got it. Then I’m researching and read this http://www.rsds.org/pdfsall/melis_crps_head_neck.pdf Page 6 upper right hand side (granted this is older from 2002) about giving a repetition of SGB until pain is significantly reduced. I have read of many here having had quite a few blocks.

I was talking with my PM this week and he mentioned that I could come in as frequently as needed basically. This surprised. So is there such a thing as too many??

My arm says we’re not there yet, and I question if we’ll be there at #6, or #10 or if ever. <sigh> My arm is being stubborn damn it. :rolleyes:

Hi Vrae! Happy that you are seeing some improvement, that is awesome. I did not read the complete sections to the links you posted because my right eye is messing up, drooping and double vision (only wish it would do it later today during my SFEMG) and I wanted to post a reply.

This is just my opinion and formed from my experience. I do not think that you can have too many, unless they are ineffective or the dr is sloppy at administering them...meaning he/she doesn't hit the right spot. There is a risk with them, but what procedure doesn't have that?? I think any potential benefits outweigh the possible risks. I think that as long as you are feeling improvement, even slightly, from each block, then you should continue on with them. If you are having no improvement and/or adverse effects, then stop them. I wish I could remember how many they gave me back in '91-'92 for RSD in my face, all I remember is that they were very aggressive with them, especially because I was responding so well. This is why I wanted them as soon as I found out it was actually RSD in my hand, but it was too late for them to help me out and spread was already happening. And part of that could have been how that particular dr administered them. I did not get the warmth and droopy eye each time. He only wanted to do 6 and no more. I switched drs a few times...while I was on the path to get the SCS's, I wanted him to try SGB's and other blocks while I was waiting for insurance approval. I wanted to make sure I tried them again. Some of them helped and I think that was because his technique was completely different, but that is when the adverse reactions started to the meds they used.

I am sorry, I hope that makes sense. My eye is getting worse so I need to stop for now. Bottom line is, IMO, if you are improving and dr is willing to keep going beyond 6, then go for it. But, you have to be comfortable with it.

All the best,
Nanc
:hug: