DRG Treatment
 

I'm all ready to go in for my DRG trial this morning. I'm starting a new thread where I can post updates of the process for anyone looking for more information about the nitty gritty details of what to expect...which are not super easy to find from my own research. Hopefully the info helps some people...I know I always appreciate reading about other people's experienced with different treatments, especially because we all react differently to the various treatments out there.

I've had to fast since midnight and I am allowed to have water until 9am...my check in is at 11am. Wish me luck! And as always...thank you everyone for your kind thoughts, prayers, and support. Will hopefully be able to check in tonight with an update. :)

🍀🍀🍀🍀 I hope it works out.

Praying that all goes well and that the DRG trial will help you find some pain relief. Hugs.

Just got home about 30 mins ago...it was a LONG day since things were running way behind. Will post more info tomorrow but guys...my back is sore but my leg feels great. Pain level in leg went from 8/10 to 3/10. I cannot remember the last time my leg felt this way. There's still pain and discomfort...but it's like night and day. Will post more tomorrow but just wanted to give a quick update.

Ok...so here's a little more info on how my DRG trial appointment went.

I had a check in time of 11am. I had to fast after midnight and could drink water only until 9am. I went back to the room pretty quickly where I changed into a gown and they started if fluids while I waited...which was a good thing because I didn't actually get taken into surgery until after 2pm.

They put antibiotics into my IV and sedation meds as they wheeled me back to the operating room. I had to roll onto the table in there (the room was SO cold) so that I was on my belly. They got me positioned and I don't really remember anything until they woke me up to ask me questions about if I could feel the sensations from the leads and where i could feel them.

Next thing i remember is being wheeled back to my recovery room and shaking violently from the cold. They put this heated plastic thing over me along with warm blankets. It took a long time for me to stop shaking and my left shoulder l, left arm, and right arm were all screaming at me. The heat calmed down the arms but not the shoulder (that arm was positioned over my hard and I can't lift it like that with our tremendous pain so I am still feeling that ripping and tearing pain this morning).

Once I was feeling a little better and not shaking so much, the rep from st judes came and programmed the device with me. It took maybe 5 minutes and was very easy as it's all on a little touch screen device. She would ask me when I could start feeling sensations and where ibfelt them and then when they stopped. Once that was done...I was absolutely shocked at how little pain I felt in my leg. Seriously...it was...is...amazing. Pain went fromn8/10 to 3/10 and had stayed there even when I've been standing or walking. I ended up walking out to the car instead of taking the wheelchair (though several people offered to call someone to bring me a wheelchair so my walk must not have been too pretty...lol).

My mom was allowed back into my recovery room after the programming was done and the reps went over basics with her too, gave her the programming device and my restrictions and stuff. My mom brought food...so I ate. By this point it was after 4 and the last time I ate was dinner the night before. As I was eating, the nurse checked in on me twice and the second time I asked to use the bathroom. She took out my IV and unhooked me from the monitors. After the bathroom she said I could get dressed and they'd let me go home. I was given 10 days of antibiotics to take...just as a precaution they say.

My back is very sore. The nurse said that it's from sitting so long and maybe she's right. It's just REALLY sore and the Tylenol has done nothing to help. I will have my husband pickup some Advil on his way home to see if that helps or if it will get better with a little time.

My restrictions are no bending, twisting, pulling, reaching, or bathing. That is the part of this I'm most worried about with an almost 3 year old at home but I have family and friends lined up to help me out. The second thing I'm worried about are the external wires...i am afraid I will catch them on something.

I go back on Thursday for a check up. The rep from st judes said she will call me every day to check in during the trial. A nurse from the surgincenter will check in with me either today or tomorrow.

And that's pretty much it. If anyone has any questions about something I didn't mention, let me know. Will continue to keep you guys updated. At this point I feel very confident that I will want to move forward with the permanent unit because the relief in my leg is AMAZING.

Day 2 of the treatment went really well. My back is still very sore and I've been taking Advil without much relief..but it's tolerable pain especially when used to RSD pain, you know? But the pain relief in my leg is still great. I did quite a bit of walking around the house yesterday (my back felt much better when standing or walking) and it did not increase the pain levels beyond a 3/10. At rest I was able to turn the stimulation down a little and still had relief. Waking up this morning I would say my pain level is about a 2/10 at rest. It's like the difference between a sunburn now and my leg actually being on fire before.

Today I plan to go to the store just to walk around for a while and really see how long I can walk before the pain starts to increase and if it is improved by raising the stim level again. I don't want to push too far...because I'm still weak and out of shape...but I do want to just see what I can handle. I would walk outside...but it's cold and my arms, shoulder, neck, and abdomen do not have the benefit of the DRG.

Going in for my follow up today. Yesterday on the phone they mentioned possibly taking out the trial unit today since I'm responding so well to save me a trip down to the city...but I really want to keep it in. After years of no serious relief...I'm not ready to give this up after only 2 days. We'll see what they say.

Follow up visit with the doctor went great. I didn't even have to say anything about leaving the trial unit in. The doctor encouraged me to leave it in until next Wednesday because I have been up and moving and he feels like I should continue to do that as much as possible in the next week because it will make it easier on me when I get the permanent one in. Yay!!

So I am scheduled to go in to get the trial leads removed next Wednesday and then the permanent unit implanted on December 11th! That feels like it's so far away but I know it will be here before I know it.

I also want to note that while my back is still a little sore, it mostly is only bothering me when I am sitting or laying down, specifically when I try to change positions. While standing or walking my back doesn't bother me hardly at all unless I reach for something (which I'm not supposed to do).

Will keep everyone updated on any other progress over the next week or so. Let me know if you have any questions!

That is so exciting! I"m glad you are getting good relief from the pain.

On my 4th full day with the DRG. It's COLD outside...like in the teens...and I think I have the flu...so not a good day for me. Definitely seeing an increase in my pain up to about a 6/10. It sucks...but I'm actually glad in a way that it's happening because now I know what that will feel like when it happens in the future (because we all know it will). 6/10 sucks...but my baseline before was 8/10 and if this was before the DRG I would be huddled up on the couch unable to move right now. Instead I'm hurting but still able to get up and walk around. I did turn the device up and it seems to have helped a little but I'm still definitely flaring. I put on Lidoderm patches and heating pads to try and keep myself warm and that's helped a little too as earlier today I just couldn't warm up at all (though that could be the flu too...just a crummy day overall).

Back pain has gradually been improving over the last few days. Right now it's only really hurting when I change positions when I'm sitting or laying down. So I'm feeling good about that since the first two days is was really just generally sore and achy.

Just popping in for a small flare up update. My leg is back down to a 3/10. My arms are still at about a 9...so down a little from yesterday but worse than normal. Still have the flu or whatever stomach bug this is...not fun...but this was a 48 hour bug for my daughter so hopefully I'm at the tail end of it...though my immune system sucks so I'm not holding my breath on that one.

catra,

Thinking about you and hoping that the flu is gone. Appreciated all the updates and info you have given about your experience with the trial. Hoping and praying that this procedure will be an answer for pain relief for you.

brightcloud

Thanks. I'm still having some stomach issues...thinking now they may be caused by the antibiotics. Without getting too graphic...i had several things going on and it seems like the flu portion is gone now but probably having some side effects from the antibiotics. Thankfully I only have one more day of those and then maybe I can eat normally again. Really looking forward to a nice warm bath tomorrow afternoon though. I have already decided I need to make two trips to get a shampoo at the salon a week after my permanent implant and am getting a seat I can put in the tub for easier sponge baths. I'm also considering a grabber. Husband has been joking about getting me one for years because I am short...so I am resistant to the idea...but I do think it would be helpful with the no reaching and bending stuff. If anyone has any other tips to make recovery easier...im all ears. Glad they do the trial and that I got to keep it for a week and a half instead of them taking it out after just 2 days because I feel like I will be better prepared for the recovery from the permanent implant. I know that will be different in some ways because it's more invasive...but just being able to anticipate some things and plan better a little makes me feel better and less nervous.

I was really dependent on my grabber while recovering from surgery. I tried a few brands and liked this Unger style the best: Unger Grabber Plus & Reviews | Wayfair

Thank you for the suggestion! I will definitely add this to my list.

Well...my trial ended a day early (sort of). For some reason the stimulator just turned off. I noticed because my pain levels slowly went up throughout the morning and when I went to connect it to the controller to try to turn it up...it wouldn't connect and then gave a message that the stimulator was off. Best guess is that last night with all my tossing and turning that I pulled something loose and it shut down. I called my rep and since the leads are coming out tomorrow anyway we decided to just leave it off. I AM relieved that the pain is gradually increasing...I was worried it was going to be like BAM there's that level 8 pain again and I wouldn't be able to handle it. It's been slowly increasing all day and is up to about a 7 now...almost at the previous baseline...but it's taken all day to get there and unlike a flare up where the increase is instant...this was easier to tolerate. I'm sad the trial and relief are ending...and that it will be 4 weeks until the permanent unit goes in...but I'm REALLY looking forward to not having the wires and stuff on my back and to taking a nice, warm bath. <3

My appointment yesterday to get the leads removed from the trial went pretty well. They were running WAY behind...doctor didn't come into the room until 2 hours after my scheduled appointment time (this wasn't my regular doctor but the doctor that was just there that day since it's not my doctor's normal day but the leads had to come out). I did jump off about 6 inches off the table when they pulled one of the leads due to a shock in the back of my left thigh...that was weird and I felt a sort of buzzing sensation for a few hours after but it seems gone now. Pulling the tape off...awful.

One unexpected thing...I have a burn where the one cord was and where the rectangular unit was taped to my back (not where the tape was...but where these things were touching my skin). They said they are friction burns...so not from heat off the unit but more from the rubbing against my skin for 10 days. So those spots are a extra tender today but not too bad. The doctor didn't seem at all surprised or concerned so I am guessing this is normal...but I was surprised.

The rep from St. Jude's went over a few more details about the permanent implant including that I will be getting a non-rechargeable unit...which I am happy about because I am so sensitive to the touch that I was worried about how I would do with a rechargeable unit because I know some people have issues with sensitivity due to the charging. The unit will be placed on the right side of my back.

Very excited...less than 4 weeks until my surgery and...hopefully...a treatment that provides me with consistent GOOD relief!

Catra, great that your trial went well. A non- rechargeable unit sounds preferable as recharging is a nuisance and I was always worried about forgetting to recharge and damaging the battery. I had a scs medtronic unit for 8 yrs. I had it taken out because eventually my brain had adapted and I wasn't getting the benefit any more. They did offer me a trial of a high frequency unit (different brain input) but I had major issues with battery placement. So they are putting the battery in your back? I'm assuming that's you're upper buttock. I had mine there, partly in case I had a 2nd child and also because I am small and I was advised it is easier for sitting in short people so it doesn't hit the ribs. With me it did eventually cause some pain/pressure care issues with battery migration/not enough fat covering it but batteries are a bit smaller now.There are pros and cons wherever you put the battery. I can't believe they took the leads out with you awake especially as you have CRPS! You should be at least given that medication where you can't remember anything later, is it conscious sedation or twilight sedation, relaxant- something!

Good luck with the next stage, Booklover

I had sedation when they put the leads in but not when they came out...it was just sit on the bed in the room and they pulled them out. That one shock and then the wiping with alcohol after were the worst bits. Having been through it I actually would be surprised if they gave sedation for that...and I'm someone who has the dentist put me under sedation...lol. Thanks for the support and sharing your experience with me. :)

Thanks Catra121
 

Catra, how are you doing during this period that your stimulator is out and when do you have the permanent one implanted? Thank you for posting your experience. I am in the midst of a drg trial. My pain was slowly creeping up today.

The pain is rough after having that small period of relief. Thankfully...when the trial was over it took about 16 hours for the pain to creep up to the pre-DRG levels. I was worried it would be like BAM the pain is back but it was gradual over the course of the day. But after a week of MUCH lower pain levels it's hard to swallow this level of pain again. I get the permanent one two weeks from yesterday...it feels like forever away still but I am trying to get things like Christmas shopping and wrapping done before then because I will have the restrictions of no stretching, reaching, lifting, etc and I want to have as much done as possible before then with that stuff. But every day is a struggle now. Not that it wasn't before the DRG...but the pain relief was so good during the trial that it's just hard to have the pain back. But I know it will go down again in two weeks so I am just focused on that and on getting things ready for then.

I did have one flare up during the trial where the pain went up but it only lasted a day and I was able to adjust the levels up to help a little.

Good luck to you...I hope it works out and you get some good relief! I've also heard that sometimes having them reprogram the unit can increase relief. Have you called your rep?

I did contact the rep. by text. I did move the settings up and down but the amount of current?? to relieve the pain increased the tingling and needle feeling.

I go in tomorrow to have it removed so maybe the rep can shed some light on the pain increase.

I have cold crps and the drg hasn't really changed the very cold feeling in my foot. Did your extremities feel warmer while in the trial?

My limbs used to be cold all the time but now that only happens during flare ups where the area flaring gets ice cold...though according to dr measurements there is always a slight difference where the rsd limbs are colder. Since my pain was so much lower I didn't notice the cold at all except on the one day I flared. I'm surprised the rep didn't come out to change your settings or have you come in. Mine called every day to check in and I went in 3 days after the trial started for a check in but since I was getting good relief they didn't need to make any adjustments. I have heard some stories where people just had ok relief but after getting it adjusted it was amazing. But like everything else I suppose with CRPS no treatment is going to work the dame for everyone. I hope you get some answers from the rep and dr.

Tomorrow is the big day! My check in time is 7:45am...and they said if everything runs on time that I should be out by noon. Fingers crossed it all goes smoothly!

catra,

You will be in my thoughts and prayers that this procedure will go well and will result in significant pain relief.

Wishing for you the very best!

brightcloud

So...I'm home now. Things ran a little behind but not too bad. I was home by 2 instead of noon. The surgery itself took about 2 hours.

Before they took me back they gave me an IV, a Norco, and 2 Tylenol. They gave me if sedation and woke me up in the middle to ask me if I could feel the tingling and where. I have a very distinct memory of the doctor saying at the end to put me back under and that he was going to cut and then a woman's voice saying oh no you're not, not yet. And I totally felt him start cutting...but then was out. When I came back out of it I was in the recovery room and had to lie flat for about 30 mins before they let me sit up and eat/drink something (I had to fast since midnight).

Then it took a LONG time for the reo from st judes to come and program my unit because she was in surgery with someone else getting a stimulator. This time the programming took a little longer than last time. I have just a vague memory from the operating room but I think they were having issues with coverage there too. Anyway...this time I got an iPod touch and an icloud account. The iPod is in an otterbox...my new beat friend.

Bottom line...pain is a 2 right now in my leg. A TWO. I walked out instead of using the wheelchair. My back is sore and they have a wrap brace around me. They wanted to put ice packs on but I said no...but they said I may still want to use it for pressure and I like it for that...plus it helps me to not stretch or bend too much which is a plus.

I go back on 11 day for a check up. Restrictions will be for 3-6 weeks according to the doctors. Slightly annoyed that what the Drs said and what is on various disc arge papers don't all match...but will error on the side of caution with everything and ask any questions at my follow up or when they call tomorrow if anything comes up.

I was given 10 days of antibiotics and 30 Norco for the back pain. The back pain right now is soreness...but everyone assured me it will be a lot worse when the lidocaine wears off. But I can WALK with my leg pain only at a 2 right now!

All I can say is...AAAAAHHHHHHH! All day yesterday the pain in my back was minimal...not bad at all and I didn't take any Norco except right before bed because I knew trying to sleep would be an issue. Which is was...hard to get comfy and the experiment of trying to sleep in the recliner a failed one. Sleeping on my stomach was the only thing that worked. Unfortunately I'm a flopper when I sleep. Usually I am constantly flopping from one side to the next. Well...in my sleep I flopped...and then...i was not sleeping any more. The profanity and screams...glad I didn't wake anyone up. Getting off the couch was...difficult. I guess this is the pain they kept talking about. Of course...once I rolled off the couch I started coughing and it was like...NOOOOO...dont cough! That hurts even more. So now I am awake and in AGONY and waiting for these pain meds to kick in.

In happier news...i noticed that the tingling with the stimulator is very positional. When walking or standing or with legs bent while sitting it was perfect but reaching for anything (even scratching my head) or straightening my legs while sitting I could feel tingling. So when I was done walking for the night I was able to turn the stim way down (to maybe half what I had it on during the day)...and I'm still getting excellent relief in my leg. When I start walking around and moving later today then I will bump it back up again.

One feature I like about the controller is that (I have 2 leads that cover different areas so my leg is covered from the knee down) I can "group" the two leads together and adjust as a group all at once. They can also be adjusted individually which was good during the day as I was moving at get the right settings for each area, but at night when I just wanted to bump it all down it was so simple to group it all together and bump it all down. Then it will be easy to bump it up in the morning.

Speaking of the controller...its an iPod touch with all the normal iPod touch stuff including apps, camera, safari, etc. I don't plan to junk it up with anything else...but I did do some playing around on it since I don't have an iPhone or an iPod touch. Definitely interesting...but I'm hoping my classic iPod never dies...lol...i would miss the simplicity of it and massive storage. ;) I have not yet determined a good way to carry two phones essentially. They don't fit in my current purse as it...so I will have to figure something out that's not awkward or prone to me forgetting one or the other.

Ok...think the meds are finally starting to kick in. Don't think I will get anymore sleep today but I will try to still rest a little and maybe pull out my stitching and listen to a Book (currently listening to The Godfather).

So day 2 was a rough one with the back pain. Not gonna lie...sitting was rough and attempting to get up from sitting was so painful I tried and failed numerous times to get up and suffered a great deal.

BUT...when I was up and walking it was much better so I did a lot of that today...just laps around the first floor. Total steps =2942...and my pain in my leg stayed at a 2/10.

So...as bad as this back pain is from the implant...that will heal and the relief in my leg is just incredible. A TWO...I just can't get over that. My legs and feet are sore from all the walking...but to not have the RSD pain in my leg above a 2 is just...I don't think I could have imagined that kind if relief before the trial and to have it be so good today is just...it almost brings me to tears.

Day 3 so far...pretty much the same as day 2. I slept in the recliner with feet up but the back was not leaned back. I was kind of at an angle in the large chair and managed almost 3 hours of sleep that way...but at least I didn't roll over or flop so I didn't wake up screaming.

I did feel super overheated and sweaty this morning...honestly thought I was going to pass out and ended up laying face down on the floor for about an hour until that passed. I think maybe just too many layers or something? I don't have a fever...so I don't think it's an infection and it passed with a little rest...but that was a bit scary.

My big struggle right now is sitting, getting up from sitting, laying down, etc. Up and walking the pain in my back is tolerable but my legs just can't hold me up all day yet after years of being mostly sedentary. So I am really struggling to find a spot that works for me to rest in.

My mom came and picked me up to take me to the store. I was happy to get out...but riding in the car sucked. I could not drive right now. So anyone considering this...be prepared to not drive for a while. Again...did really well with the walking...feet and legs just got tired after a while.

This is so amazing! I can't imagine a 2.... I know the back pain is bad now, but like you said, it will heal. I bet trying not to twist and turn is hard though...

Yes...haha...life with a 3 year old and trying. It to bend and twist are not a good mix...lol. honestly my biggest struggles relate to sitting, laying down, and then getting OUT of those positions. Car rides are also horrible right now. I thought that by now I would be able to drive short distances...but that's still a ways away I think. I do feel better up and walking...but also have to be careful to just be up and walking and not trying to do anything else while I move about (it's really hard to turn off mom mode even when in pain).

The grabber though has been a real life saver. I still feel a little silly when I use it but it has really prevented me from doing anything too strenuous like bending and whatnot.

Didn't post an update yeaterday. Everything is still pretty much the same...leg is great but back sucks. Yesterday I managed just short of 5000 steps for the day and I'm pretty proud of that. My legs are slowly getting used to the extra work and I know it will be months before they can handle anything approaching normal all day walking but I like seeing the total number there. Nice bonus on the controller that it shows that.

I also found a way to sleep that doesn't totally kill me except when I try to get up...so I got a little more sleep last night. I've been taking one Norco and 3 Advil every 6 hours or so and that seems to be the best combo for me at the moment. I do not have enough Norco yo make it to next Friday's appointment so I am hoping the pain starts to lessen a bit over the weekend where the Advil will be ebough on its own.

I am feeling very tired today...maybe it's been all th4 walking and not the greatest sleeping. I'm going to try to take it a bit easier this morning...but I can already tell my back doesn't like the idea...haha...so we shall see what happens in a few hours.

Well...Im a big dope. Totally forgot to take ANY pain meds this afternoon. I kind of dozed off and then had a visitor who brought some freezer meals. And then it was 6pm and I was like why am I in so muuuucccchhh pain? Because I'm a dummy. Today was obviously very much a rest sort of day but I still walked almost 3000 steps today even with the resting. Best parts of my days are when I'm walking...but my body needs rest too so I'm trying to balance that.

Day 6...and there finally seems to be some improvement in this back pain...woo hoo! Still very sore and I'm remembering my pain meds today...but I have been able to sit reasonably comfortably in a chair today with just a dull ache.

So far in all 6 days my leg pain has not risen above a 2/10. That is just...incredible.

Ok...so here I am one week after implant and things are going well. Yesterday (day 7) was a bit of a slug day but also one of the worst in terms of me over doing it because my daughter and husband were home all day and I did a lot of getting down on the floor with her, making them food, getting up and down from sitting to get my daughter things (which is one of the hardest things on my back...changing positions), etc. Today she's back in daycare and I have already walked about 6000 steps and it's not even 10am. Walking feels GREAT and I am so excited about what this means for my future. Wish it wasn't cold outside but you can't have everything. I will rest a bit bow and then in a few hours walk around some more. So far all I've taken meds wise Today is 3 Advil and the antibiotic. Trying to save the Norco for those times when I really feel like I need it for the back (which was a few times yesterday especially after an incident with my daughter where i could not stop laughing...which is good for the soul but bot so much for my back right now...lol).

Yesterday I ended up with over 8000 steps for the day a d today I did just over 6500 but was also on my feet wrapping gifts at the dining room table so I feel like I did about the same amount on my feet. Legs are a little tired so I think this is the max I can do for now. Really proud of the progress I've made so far.

I'm currently only taking Advil during the day and one Norco at night. Pain is getting better in my back. Last 2 days I've been itchy so I hope that's a good sign that things are healing. Tomorrow is my last day of antibiotics...yay. No bad side effects this time from them but it's a different dose so maybe that's why.

My doctors appointment is friday...so we'll see what that is like. I really don't know what to expect from it.

Day 10...noticeable reduction in my back pain now. I can sit and it really doesn't hurt except when I move. Last night I was able to actually sleep on my side instead of just on my stomach which is more comfortable for me. I get a little twinge every now and then but night and day from what I was feeling even 2 days ago.

My legs are feeling a little sore so I am going to take it easier today and just keep to walking in the house and not go anywhere today.

Let me just say...sponge baths suck and dry shampoo is a miracle (doesn't really compare to actually washing your hair but SO easy and much better than nothing). I have another 4.5 weeks of sponge baths to look forward to...boooooo... :( Totally worth it though. :)

6 weeks from surgery before you can shower? That seems insane.

I could shower after 3 weeks but I can't shower because of the RSD pain...only take baths. And I can't take a bath for 6 weeks. :(

Catra,

Appreciate your detailed reports of your recovery and progress. Great to hear that you are in less pain.

When you finally get to take that first bath, it will be a treat!

To your continued recovery,

brightcloud