Good News With DRG Stim Trial
 

It has been a while since I have posted anything but with good things happening in the past week, I decided that it was a good time to make a positive post.

Last week, I made the decision to go ahead and see if a dorsal root ganglion, (DRG) stimulator would work for me or not. In case you are not familiar with what a DRG stimulator is, it is very similar to a spinal cord stimulator except instead of the leads being placed over the spine, the leads are placed over the nerve bundle going into spine that feed the leg known as the dorsal root ganglion. About a year ago, I went in for an SCS only to be disappointed by it causing more pain than before I had it done. So why would I choose to try the DRG stim after complications from the SCS? I chose to go ahead because it is actually FDA approved for lower limb CRPS, so I figured maybe it could help instead of hurt this time.

I had the temporary device put in place this past Tuesday at the Cleveland Clinic and made the six hour car ride back home the same day. The ride home was rather uncomfortable on my back from the implant but my foot felt great. I just wanted to get back to the comforts of home.

Between yesterday and today, I have been trying to find out what I am able to do that I was not able to do just a few days ago. It is amazing how doing simple little things that others do all the time, like wearing a sock, or putting my foot flat on the floor to feel the soft fuzzy carpet under my foot are so easily taken for granted. Neither of these things I have been able to do for over two years. I was told to push myself and do some of these things that I normally cannot do, so today I pushed a little further and started taking a few steps around the house. I still cannot walk. I did not expect to be able to, but at least I can make the motions and place a small amount of weight on my foot. I am in a little pain still, it did not go away completely, but it is still only two days after having the implant. I know I don’t have the 90% or better reduction in pain that they want me to have, but so far, I am very happy with the results.

Alaina,
Good to see your post. I know it has been very difficult for you. I am especially hopeful all continues to improve. Thanks for the explaining the difference between the SCS and the DRG. As you mention; it has only been a few days and you have experienced improvements. Please keep us informed.


Gerry

I hope someone could drive you home safely! It's pretty intense.

I hope the trial continues to go well for you. Unfortunately with late stage CRPS there are no miracles.

Best of luck to you!

Hi Alaina,

I'm so very excited for you that the trial is going well! I hope all the transport and check-up is tolerable. Procedures can just wear you out. I'm sending healing thoughts and the most positive vibes your way. I think it is very good news that you can do things you haven't in two years! I wouldn't expect you to walk on that foot right away either. Lots of work to be done to get to bearing more weight safely.

But this shows there is definitely hope. I'm keeping the faith for miracles, or at least successful treatment options.

Remember, pain relief can be cumulative. Gains may build and re-wiring takes time. Your system has been ramped up for a long time and it will take time to settle. I'm in a very different place after 2 years of ketamine. My nerves and brain needed time to re-work their understanding of sensation as pain. Which then allowed me to work harder at recovering function.

:hug:

Thanks for the great support Gerry, Marleen and Littlepaw! That is one of the things that I have always liked about this forum is the great support from so many members.

Marleen, since CRPS affects my right leg and foot, mostly my ankle and foot, I have been unable to drive since the CRPS started giving me real problems in January of 2015 following an ankle surgery. I am lucky to have such a wonderful Mom who drives me to all of my appointments now. I usually sit in the back seat with my leg elevated which was the only way that I managed to get some relief. The ride home was difficult but I wanted to get back to the comforts of home instead of staying in a hotel.

I did have have some problems late Thursday night that caused me to wake up in pain. It was too late to call my rep, but I gave him a call first thing Friday morning. I was no longer receiving stimulation from the device for some reason, and from what I described to my rep, we had a feeling that my leads migrated out of place. After spending most of the day on the phone, he managed to find a rep closer to home that would be able to run some diagnostics and reprogram if necessary. It meant that I would have to meet the rep in Flint which is 2-1/2 hours away, but that is better than going all the way to Cleveland or just ending the trial after just three good days.

I met the rep on Saturday and she ran a few diagnostics. It turned out that the leads did migrate just enough that I was no longer getting the coverage that was required to provide relief the way the stimulator was originally programmed. There were also a couple of errors that were preventing the stimulator from working correctly. To top it all off, I think that I just overdid things with all that I did over the previous couple of days and the added swelling was not helping me at all. The rep did manage to reprogram the device enough that I am getting good relief again. Now I just have to remember to try to go slow and not push myself so much. I want to get better, but moving too fast is not the way to go.

I know what you mean. My parents are both in their 70s and are my main caregivers, have been for years now, for a few decades at least. I will have CRPS come 21st September 22 years.

Yes, that is an issue with a trial, things can move. They can even move when it's permanently in place - I know people where leads have started to migrate, it's truly hit or miss. I don't mean to scare you, at all, but it is a reality.

No, moving too fast is definitely not the way to go. You don't want things to shift out of place. Keep an eye on the swelling, because if it gets infected, you need to have this removed IMMEDIATELY. Keep an eye on if you run a fever!

Best of luck!!!

I am so excited to hear you are getting some relief! I really want to get the DRG...but my insurance won't approve it. I'm looking at options for possibly changing insurance companies...as mine seems to be the only one (of the ones my dr accepts) that is just flat out denying the DRG (but will approve regular SCS). I hope that your relief continues...it does sound encouraging. Sorry about the migration issue but glad they were able to reprogram for you (without you going to Cleveland). Good luck to you!

Thank you Catra! I'm sure if you and your doctor keep on fighting for it, they will eventually give approval for you to go ahead with the trial. I know you have been having so many difficulties with your insurance for some time now. That has to be so frustrating!

My trial ended Tuesday afternoon and we returned back home yesterday. I wish I could keep the device in for a little longer while they worked on getting approval from my insurance for the permanent device, but it was nice to be able to take a shower once we got back to the hotel for the evening which I could not do during the trial. All in all, the doctors and I were extremely pleased with the results of the trial during the past week even though I did have a few problems that were quickly taken care of. The only real complaint that I had was how temperamental the device was on how I was positioned. If I was lying down, or standing or sitting with my back slightly arched, I would get a little paresthesia. If I was a little hunched over or slouching at all, I would get no relief. I guess that means that I will have to watch how I sit or lie down from now on if I want good relief without the paresthesia going on, but of the many treatments I have tried so far, this is the only one that has given good results. Since I was getting good pain relief and can see me starting to get my life back, I can easily put that off to the side and not really complain about it at all.

Since we were all so pleased with the results, they are trying to get insurance approval for the permanent device. If everything goes well, I should be getting that sometime mid to late September. My fingers are crossed that everything goes through without any problems.

I am so, so happy for you. Do they think with the permanent device that there will be less issues with the placement of the leads since they will be implanted? I hope that's the case for you...because if you have NO side effects AND get relief that would be so fantastic. But I agree...even if I had to be careful in order to get relief...I'd BE careful...lol. Oh...I know you've struggled for so long and I am just so happy to hear of you getting good relief. I have my fingers crossed for you.

With the leads being implanted there will be no chance of them accidentally being tugged by anything. They also assured me that because it is a permanent device, the leads are anchored and there is less chance of them moving around at all. Hopefully the permanent device works at least as well as the temporary one did with fewer complications. Not that I had all that many.

Alaina,
Thankfully the rep was able to reprogram. I can understand movement may cause the leads which are not implanted to move causing various sensations. Even tho the device is permanent; if any similarity to an SCS, the leads can still move or migrate; just not as easily (Also, scar tissue that holds the leads in place can also sometimes cause a bit of movement. So either way; best to play it safe and take extra care.

Again, thanks for the updates.

Special thoughts coming your way.....

Gerry

If the leads have less chance of moving around with permanent implantation and compared to a regular device, then that's progress.

I hope you can get the OK for a permanent device (or is that done already). Here in this country for any type of stimulation device, you first need to take the trial, and then pending on that and a few other things you get approval yay or nay.

That's pretty much the same here; I first had to get approved for the trial with the SCS by my PM and a psychologist. Then, as you mentioned; pending on that, etc., you may get approval.


Gerry

It is the same with the DRG stimulator. I have already been given the approval from my PM and the psychologist. I am just waiting for approval from my insurance now.

I haven't been too active on here in the last year and I wanted to post an update. I did have the permanent device implanted back in September, and although it hasn't been working near as well as the trial went, it has given me part of my life back. On any given day, my pain level is fairly steady at around a 3, which is far better than where I was a year ago. I just finished up with physical therapy a couple of weeks ago, being released because my therapist felt that I was no longer making any improvements that couldn't be made with at home exercises. I push myself every day and found just the other day that I am now able to get out and ride my bicycle for over 4 miles. Come fall, I am registered to take classes at a local university and hopefully continue to do well.

I'm hoping that this will be an inspiration to those that are feeling like there is no hope. Hold on, keep working with your medical team, and don't give up. Something will eventually help. It all just takes time and patience.

I am so happy to hear it is still going well. A 3 is amazing! I hope you have continued relief. I got mine in December and have been so happy with it.

That is amazing progress. Good luck with your classes! :)

Well, it's been a long, long time since the last time I even checked in here let alone post anything.

I have not been doing all that well lately. My stimulator battery died back in August of 2019 while attending school, and with driving a long distance, 100 miles each way, every day to class, life really threw me for a loop. With my busy class load that I had, I was not able to have the battery replaced until January of 2020. They did end up replacing one of the two leads since it somehow became damaged. Since then, I have been getting little to no relief. With covid appearing in the US back in March of last year, making the long trip to Cleveland is no longer an option. I have met up with a rep much closer to home to have my unit reprogrammed, but I still was getting little to no relief. I have since turned the unit off and gave up on it. Now, I'm back in search for a new PM doc that is closer to home than Cleveland. Where I live, the closest doctor that I could come up with is two hours away, but has poor reviews. Really getting frustrated with nothing providing relief for very long, and so little that I can do.

Reading stories of implants, ketamine and spinal fusion are shocking to me and crude with the patient suffering from invasive sometimes permanent treatment that is experimental. It's a freaking crime doctors are doing this to desperate and suffering people. I refused to do it. Most of the time it makes things worse. My shoulder surgeon was afraid to give me a cortisone injection worried it would bring CRPS to that area. It didn't. But what about a spinal fusion or implant surgery. Were they worried about that? No, didn’t even know it was a problem. Pitiful and scary. Crude at best. Wishing all a recovery with neridronate infusions. Bug your representatives for trials of Italian drug here. We can beat this nightmare. Love and hope to you all. S

Neridronate = a bisphosponate medication. It is available worldwide. There is absolutely zero need to travel to Italy for it, when it is locally available. Key is just to find a doctor that works with it. Most RSD aware rheumatologists will be able to help you!

Just FYI!