Met w/ my neuro doc today. He completely agreed that the RFA was not a good idea, but thought we really needed to continue with the blocks and add a cervical block to help w/ what is going on in my arm/hand/torso. If the lumbar blocks didn’t amp me up before each visit… well.. going into my neck is sure to do the trick! Oh my gawd!

I told him about how much the injections aggravated my lower back. He wants to add a Medrol steroid pack with the blocks. Okay. Dear Lord please let me still be married when all this is done lol. Yikes.

He called my PM doc while I was in his office and pretty much lined him out on there’ll be no RFA, and can you do the cervical and lumbar block simultaneously, and we’ll be adding a med, and so on.. Was cool. I felt like I had an advocate. He said, you want your doctors talking. He right.. I do. They’re my team! He was nice to my PM doc, but was very much protective of his patient. I liked that.. a LOT!

We added a med today, Mexiletine. Well, I’m waiting to add it. The pharmacy said it would interact badly w/ the Zanaflex I’m on. I don’t think Zanaflex does much for me anyway, so cool I won’t take it. Oh no, since two different docs (PM = Zanaflex & Mexiletine = Neuro doc) are involved he wants someone to “own it”. I have another muscle relaxer I use that I feel is far better. <sigh> oh well, hopefully they will get that worked out soon and I can give this new med a go. It will require I have my blood work monitored. For what I’m not sure. I did not ask. Level perhaps.

He increased my Zonisamide. I’m cool with that. I think this drug is helping reduce my neuropathic pain (shocks). Anything that gets me closer to being able to backing off gabapentin. I swear that drug is just messing up my stomach. He understands my goal is to back off the gaba. We just are not there yet. I agree.

So I know I am going to do at least six. PM doc told me this previously. I meet w/ the PM again on 04/16, and I am guessing he will want to start right away. I am trying to figure out a schedule to get rides home for six weeks in a row. I would like to have this edit completely to bed. We’re getting closer thank God. So if I can get the logistics all worked out.. wow I NEED meditation training STAT!

If I can just learn (quickly) how to get and hold my mind in the right space to get through them. I have no idea why this just freaks me out so bad (the actual procedure part). Not like I’m worried about CRPS w/ these treatments, just the actual you’re about to stick me and it’s gonna hurt! I think it takes me back to memories of post op pain in my back. I have no idea, but I hate it. It’s ridiculous actually, borderline embarrassing. Did I mention I have birthed three children, one without anesthesia (not by choice). You’d think I’d have this. It just raddles my cage. Maybe I’ll get better at it the more I do. MAYBE.


To bring new readers up to speed:

So far we’ve done 1 Sympathetic Block and I responded well in that my limbs warmed up and every symptom from the waist up gone! Limb warmth lasted about 30-ish hrs and upper body about a week. Lower body gave me grief from the first one with spasms in my legs and hips.

The second procedure was the Facet Injections / Medial Branch Block. This was for diagnostic only for my lower back. See my lower back got angry with the Sympathetic Block. It wasn’t acting like it would hold up to weeks of injections and is also contributing to the CRPS pain / dilemma. I responded positively. Therefore the PM wanted to do RFA. I declined.

Hi Vrae!

So glad that you guys have a good, solid plan laid out. Also glad that he will be doing the blocks weekly. IMO they are more effective when administered closer together...at least that is what worked well for me. I am so hoping that the stellate ganglion blocks help your upper body. It sounds like your dr really knows what he is doing, so I am sure he will administer them correctly. Question - are you getting cervical blocks or stellate ganglion blocks?

I have been more nervous about getting needles and IV's then having surgery, so I totally get your anxiety about the blocks. I always told myself that this uncomfortable feeling and temporary pain will be over within a few minutes and the result will be well worth it. Practice your breathing and use it during the injections, it helped me relax a bit more. And it might get you to that right space.

Please keep me (us) posted on your progress. I am wishing you the best!
Nanc

Question: Ya know that's a good question Nanc. I thought about that when I was typing this up. He was talking with the PM on the phone and both terms came up. I want to say we're doing the stellate ganglion blocks. I will get clarification when I meet w/ the PM on the 16th. Either way .. yikes Nanc~! Please come hold my hand! lol What is the real difference anyway.. just location right? Hell Nanc I can't even bring myself to talk w/ Dr. Google about it. Freaks me out to see the pictures!!

oh I totally agree.. surgery.. knock me out, do whatever, I'm good. This being semi-awake stuff.. jeez!

I also agree with you on the breathing thing. I was trying to do that with the second one. I did better too. I didn't cry.. but I did cuss lol. Not like a sailor, but just say'n. Yes, I need to practice.. where is my happy place? oh yeah, some warm island calling my name somewhere.. Yes, must keep eye on prize of things won't hurt so damn bad after the first ___ how many? two, three? Like you said maybe since they'll be closer together and it was lasting a week. Last time I had crazy spasms in my hips and legs. <sigh> Maybe after a few that will subside? However, that is far less pain than what is going on in the rest of my body.

Thank you so much for all of your support through these. I appreciate it more than you'll ever know! I feel like such a newb.

Definitely find out which ones he is doing. I would think stellate ganglion blocks since it is your upper body. SGB's are done in the front of your neck, beside your throat. That will affect your arms and hands (and face if necessary). Cervical blocks will be on the side of your neck, towards the back. I had the cervical one for a pinched nerve in my neck.

I wish we lived closer, I would be there with you in a heartbeat rooting you on .

I am one that tends to be very quiet and I hold my breath when getting those blocks, shots or whatever. But, when I got a steroid injection in my foot (in the arch), I did cuss like a sailor. Then I apologized to the dr, he said "don't worry about it, I have heard much worse" . To me, that shot was worse then the SGB's.

The very first SGB I got, 23 years ago, was awful. Back then it was a new thing, there was no sedation and x-rays were not used for them, they just felt around for the right spot. I had to hang my head off the end of the hospital bed and pick a spot on the ceiling to focus on. I didn't really know what was going on and I tensed up so bad that I couldn't turn my head afterwards. The dr walked me out to the waiting room to my mom to tell her what he did, etc. I couldn't turn my head to look at her and my face was really red/flushed and my eye drooped (flushing and droopy eye is a good sign, means they hit the right spot). She asked the dr "what did you do to my daughter??" I relaxed more each time because I knew what was going on. This is one reason why relaxing and breathing is so important Now they are so much better because they use x-ray/fluoroscopy to guide them. Those rough ones back then put me in remission for many years. That is why I was eager to try them again when I had RSD spread to other areas.

I am happy that your dr knows how aggravated your back was after the other injections so he can take precautions next time. The SGB's should not affect your back at all, unless you tense up a lot!! A nice warm island...ahhh...let's go there (there we are).

You will do great! You are such a brave and strong woman!! I will be there with you in spirit!

Nanc

Hey Vrae

How lovely to have a doc who is fighting for you and listening, and who wants you cared for as best they can... Sadly rare for too many folk! I'm glad he spoke to your doc - IMNVHO with something as complex as this, our docs should be on the phone to each other before any new treatment is auctioned. Least they can do lol.

I echo much of what Nanc said, apart from the technicalities of actually having been through it....because I haven't. Thank goodness. But you're both brave gals having the things done at all, and equally I think no less of anyone who finds them terrifying. I've read about the procedure and I think it's fairly freaky stuff, especially the first time.

I suspect that no matter what you do, that first SGB is going to be scary, but they'll get easier each time simply because you'll know what to expect....you'll have been there and got the t-shirt personally monogrammed in gold, and embroidered with detachable chocolate.

I know it's freaky and weird, but I would say to read about it and visualise it for yourslef, and once you're used to that, maybe even try to watch a YouTube vid of it. It'll probably make you cry the first time, and generally have a little melt. It has that effect on me! But if you can get to a point where you know roughly what happens and can imagine the steps, you will be more prepared for it when it's happening to you, and you can practice thinking it through, eyes closed, and breathing as normally as you can. I think it's the most effective kind of preparation, simply because watching it scares you and makes your heart rate go up, etc. The adrenaline starts to pump, and you feel that urge to run screaming from the room!!

If you were going to be out of it, zonked happily and snoring quietly during the whole thing, I'd never recommend watching. But if you're going to be awake and frightened, then exposing yourself to that fear gradually at home is a little easier on your system than just going in cold.

Now the above is just me, and you must as always do what you think is best for you. So if you think this is the most stupid idea ever then feel free to throw your hands in the air, utter a few choice swear words and comments about my idiocy and ignore it. Lol.

Take care and I wish you all the luck possible with it Vrae. If its useful, I'll send you another ATTA GIRL!!!!

Bram x

So I should expect red flushed and drooped eye? How log does that last? Will I be able to drive later that day? I have to get my daughter from school.

okay.. I am so going to try and not be tense. Your warm island made me smile thanks Nanc!

Bram,

I swear, you crack me UP! ahh.. LMAO "t-shirt personally monogrammed in gold, and embroidered with detachable chocolate." Now that would be lovely. I wonder if they have a suggestion box at my doc office? hum..

So I at least have the advantage of having done two blocks. They were two different kinds, but I know what to expect in my lower back for the lumbar injections. The neck thing, that will be completely new. For some reason that seams to freak me out a little less I guess than my back.. I guess. ANY messing w/ my lower back is just no good. But yeah, now we'll be in my NECK... <sigh> idk.. none of this is great. I just need to focus on how I will have less pain and more function. That excites the hell out of me! That and sandy white beaches and turquoise blue waters (It's my dream right?)

I just can't watch anything on it. I yi yi, I can look at some of the neck stuff but the back stuff, oh no no no. I appreciate your suggestions though. For me, I've already been somewhat exposed and know enough. I need to work on breathing and relaxing through pain. For them to do just the bilateral lumbar takes about a half hour. I think I made it about 20 min last time before I broke concentration and then couldn't get it back again.

Last time I got up and took a hot bath before I went to try and relax all my muscles and my mind. That helped a lot. I try and keep myself distracted. Maybe I need to take an ipod with good music.

I wonder what they will do first because they will have to flip me to do both areas.

BTW, atta girls are always useful


Oh wow, thank you guys so much for the support on this. I'm going to try and toughen up. I know others have done many of these and must be rolling their eye at me. I'll get better... surely I will.

I'm thinking of you today!! Will catch up with you a little later.

“Take a limitation and turn it into an opportunity. Take an opportunity and turn it into an adventure by dreaming BIG!” -Joe Franz

Vrae,
Sorry I've not chimed in before now. I've had some bad days so reading
only & little posting.
So, what day are your nerve blocks? I've only had SGB's and going on 23 of them now.
Don't feel silly, I was SO FREAKED OUT before I had them. My first one was
badly botched by a Dr. I never saw again. However, I was desperate &
luckly found my new P.M. Dr. & she is awesome! So, I think I was even more
freaked out about the 1st one with her.
I can share the details of my experiences if you like. I really can't type long.
You could P.M. me or I can give you # to call.
Since this is your 1st one, ask if they use ultrasound guidance either
alone or with x-ray. X-ray (flouroscopy) alone IMO is not good until they are
familiar with your particular anatomy. Di

Okay, so it's all scheduled. I start 04/15/14 and go every Tuesday with my last one on 05/20/14 for a total of six. I will get the Lumbar Plexus and SGB each time.

My mantra today..

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You must do the thing you think you cannot do.” Eleanor Roosevelt