So sorry Vrae..this sounds perfectly awful. I agree with Nanc, the fact that you had an initial good response does usually mean you will benefit from a second one. But, you are having symptoms 2 weeks out that I did not have. What does the Doc say? Hang in there friend! - Lottie

Hey Vrae! Did you see your doctor Monday?? How did it go?? Hope you are doing better. Been thinking about you.

Nanc

Hi Nanc!

Thank you so much for asking! I did. He felt like I responded well and would like to do a series of them, but we both agreed that my lower back is an issue in two ways. 1. If my injection site was so aggravated from one injection then how would it tolerate once a week for six weeks or so. 2. The lower back issues are contributing to the CRPS pain / problem. Sooooo Yesterday we did a Facet Injection / Medial Branch Block. Damn I'm getting brave! .. or crazy! .. or desperate.


Either way, I was so proud of myself! I was a big girl and old shed a couple of tears this time. I did cuss a couple of times though ..lol. Not like a sailor. I think they got a kick out of me in the procedure room.

Soooo we did this to see if it made my back feel better, which it did. Therefore the next thing, to do would be radiofrequency ablation. This getting my back under control, to then attack with a series of the sympathetic blocks.

As the injections from yesterday were wearing off I went into a massive flare in my upper body. Had to take the big gun pain killers and now the lovely raging massive headache.. ouch!!

So yes, I am still pushing forward. Thanks so much for asking! I hope this finds you having a decent night

I hope you feel better soon Vrae. I never had lumbar blocks, but I had eight nerveblocks when I first got rsd and had one a week for two months. They put me under for all of them. They were in my neck and I just couldn't be awake for that. It freaked me out too much. I give you alot of credit for handling all you are while being awake. You are very brave and I admire you. Mine didn't help much but I hope yours do. I'll be praying for you.

It sounds to me like your doctor is a good one, seems like he really has a good handle on what is going on with you and a good plan. You are brave and I am proud of you too!! I am also glad you went ahead with that block/injection yesterday...they really can tell the drs what is going on. Glad he is working on getting your back under control before attacking more sympathetic blocks (which I think will really help you).

I was going to get a RFA done a year or so ago and my dr decided after the first two injections (diagnostic) that he didn't want to do it. He was afraid of causing RSD in my back, so he just injected steroids. I am glad he pulled back on doing it...if he was not comfortable with it, I was not comfortable with it. I am not saying this to scare you. I did not have a back issue like you. I was having pain and pressure in my back after the SCS's were implanted. I really think it was from the battery that was close to the pain site. That pain has gotten much better since the removal of the SCS's. Now I think the pain I get in my lower back is more IC related.

I am so happy that you finally found a good dr. I know it is gonna be tough getting thru the RFA and blocks, but it looks like there is a light at the end of the tunnel. Hopefully with all of this, things will FINALLY calm down a bit for you!!

I am hanging in there...that seems to always be my response these days. Having some bad flares these days along with some other issues. Will see my PCP Friday and a new pain dr (hopefully) on May 2. I am just so sick of it all!

Nanc

Vrae and Nanc, I just wanted to say that I give you both so much credit for do your blocks while awake. You are both so brave and give me the motivation to keep going no matter how bad the pain gets. Thanks for being so strong. It gives me the strength to carry on.

Thanks Renee! I have had them both ways, sedated and not sedated. I prefer to not be sedated. Getting IV's is what I get the most nervous about. There is only part of my right arm that they can stick them and I am a hard stick! I told myself the pain and discomfort from the block is only temporary and I felt better later in the day when not sedated.

Hey Vrae,

Just thinking out loud here but, I wonder if perhaps your flare was not a flare at all.. bare with me here. After my accident I had multiple body parts injured and had to stage surgical repair based on urgency and pain. I was always in awe that as one body part got better the others, that seemed to be less painful at the time got worse. In talking to my doctors about this they all said it isn't uncommon for someone to experience that especially when bilateral body parts are affected. So, I was wondering if perhaps your upper has been in that much pain but because the back hurt also you didn't notice it as much. When the back got better wham your focus went to your upper body/arms..?? Ya know that ole saying when one knee hurts.. whack the other and you will feel better Not that any of that helps while you are in misery - just thought it might help ease some worry that the blocks somehow caused a flare elsewhere.

I will email you my thoughts on RF ablation. Did you ask your doctor about MRI Neurology? I highly recommend that before even considering RF. Quickly (I'll go into more detail in my email) If the area they are considering doing RF is the original nerve(s) that generated the CRPS II then I would NOT even consider RF. If however when you had your back surgery that started the CRPS II that these weren't the same vertabra then I would ask why a foraminotomy wouldn't be a better option. At least what I have learned from my Neuros is that it is never ever good to destroy nerve fibers (chemically or surgically) even without the presence of CRPS, with CRPS this is especially true.

The injection site irritation - you can ask your doctor to do a gentle manual massage to the area or even use a lightly warmed heated towel just prior to the injection. It would be very normal for anyone (especially you given your onset) to have muscle tension and stress prior to this type of injection. When our soft tissues are in duress they will react poorly to any trauma no matter how skilled the surgeon is being. If your husband is going with you next week even his gentle touch to that area will release tension - ensure his hands are warm Meditate, put in your ear buds and some relaxing tunes.. take a deep breath as he places his hand near the injection site and slowly exhale all the tension.. repeat for a few minute or until you feel relaxed. Then let your doctor perform the procedure. Worth a try.. you could also use your lidoderm patch applied to that area up until they inject.

<3
Tessa

PS., you already know how brave and AWmazing I think you are but thought I would shout it out anyways

I've written a post on the SCS forum but I just want to let you all know you rock. You are the most amazing and incredibly inspiring bunch of people ever.

Thanks Lottie!

Nanc, Thank you for all of the support Nanc! I do feel good about my doc and Lord knows that is SO important. So is the support of all of you. Equally so. You all have been through some of this and I have not. I never thought I would let anyone EVER touch that area of my body again. That speaks volumes of where I am at with all of this. I really do get it when you say you’re so sick of it all. <sigh> I’m so sorry hon.

Hey Renee, Yeah, I wish they could put me under. I am being forced to learn how to get my mind in a different space and hold it there. That’s the trick.. holding it there.. UGH!

Again, Nanc... I have no idea how in the world you or anyone else ever did this without some kind of sedation.. omg! BUT I agree that it would be nice to not have to get over the sedation part later that day. BUT BUT lol omg... i dunno...lol. i yi yi.

PamelaJune, I know.. right?! Thank God for all of these incredibly fabulous creatures. They are truly inspiring!

Hey Tessa... what a lifeline you have been for me!!

You have so held my hand through this!! thank you, thank you so much! Like you have nothing else going on in your world but me. And on occasion that has meant what had to seem like a drunk email from me .. “ys, I’v made it thrug today” lol (misspellings intentional) or something like that. Thank you for all the encouragement and helping me think!

I agree that I’m not sure that the procedure(s) had anything to do with the flare(s).

I look forward to your thoughts on RF. FI @ L2 L3 L4 & L5. Original surgery L5/S1. I did ask him about MRN and I asked more of a leading question and wish I had not framed it this way. I ask “what are your thoughts about MRN do you think it is necessary or overkill?” and he said, “yeah it’s kind of overkill.” Now this was a very quick convo and I want more dialog about it. He said more but we had this convo just before this last procedure and it’s not good to talk to me then because I can’t remember a thing.

Group, please remember that my CRPS leg has had issues for 10 years and mirrored to the left. That your calf is actually in two pieces. The right half of mine is completely numb and has been since surgery back in 2004. It gets confused all the time and I have crazy sensations and spasms in it. Along with my right half of ankle and foot and toes. I have a numb streak that runs down my sciatica in my thigh. I have numbness in my back and spine. The worst of my CRPS when I woke from back surgery was my right leg ankle, toes. I was paralyzed from the waist down for a week.

I talked with the PM doc about how my legs were spasming like crazy and how my legs and hips hurt for a few days (all of which id better now) and he said that we turned some nerves off (pain signals) and turned some back on. He gave me a new muscle relaxer to add to the list of meds. But I needed it and I think it’s helping.

Knowing that I responded positive to both the Facet Injection / Medial Branch Block and the Lumbar Plexus Block I’m not sure what to do next. All this messing with my nerves makes me nervous but the alternative is to have this disease consume me. I’m not sure about RF, but I have had 3 neurologist tell me that they’l be no more back surgeries for me, which is understandable .. right? CRPS would flip out for sure and with only ONE back surgery so far and look where that has landed me.

I have an appt coming up Apr 2nd w/ the neuro doc. I think it’s time we chat about the new PM doc (I like him a lot) and how I’ve done some testing, what we’ve found, and what does he think about RF and any other options before proceeding w/ sympathetic blocks.

So I’ve got to fax in my pain log for the Bilateral MBB and I guess they’ll call me to meet w/ him again, then go meet w/ the neuro doc, make a decision and execute!

Meanwhile... edit!!! it’s tough to sit in a chair.. ugh! ...ouch! My upper back is still sore. This is CRPS and just the way it is and why I have to do something. Lower back a tad sore too.

I know that you all are also fighting.. every single day we fight. We are tougher than others will ever know and sometimes tougher than even we ourselves know. It is daily, and it is in so many different ways. It’s like some other aspects of life; unless you have experienced it, you just can’t fully comprehend it.

Thank you so much for being there for me!