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DRG Treatment

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Old 11-06-2017, 08:06 AM   #1
catra121
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Default 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.
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Old 11-06-2017, 10:21 AM   #2
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🍀🍀🍀🍀 I hope it works out.
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Old 11-06-2017, 01:56 PM   #3
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Praying that all goes well and that the DRG trial will help you find some pain relief. Hugs.
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Old 11-06-2017, 08:11 PM   #4
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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.
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Old 11-07-2017, 08:13 AM   #5
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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.
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Old 11-08-2017, 07:58 AM   #6
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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.
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Old 11-09-2017, 07:50 AM   #7
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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.
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Old 11-09-2017, 12:15 PM   #8
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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!
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Old 11-09-2017, 10:51 PM   #9
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That is so exciting! I"m glad you are getting good relief from the pain.
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Old 11-10-2017, 06:06 PM   #10
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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.
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