Stimulator advice!

Hello everyone I am new to this forum. I have been reading some posts today about others experiences with the stimulator and am looking for advice. I honestly don't remember what I was diagnosed with. The pain started in my right hip all the way through back to front or vice versa, had an injection into my SI joint afterwards started having burning throbbing pain in my thigh to try to repair that I had an injection into the L4-L5 which just added to the pain yet again sending pain down into my foot. I had the permanent implant placed 9/28/13 and while it helps with pain in my thigh down through my foot it does not help with the pain in my hip. Recently I have been having increased pain in my back, on the right side, and where the battery is placed which is in the lower right side of my back. I have always had issues with the battery but it doesn't seem to be getting better just more continuous. I have tried to discuss this with my current doctor but he doesn't really seem to listen to anything I am saying just continues to tell me that he wants me to be off pain medication, which was the whole reason for getting the implant in the first place. Before the implant I was on 6 dilaudid a day and am now on 3-4 hydrocodone(Vicodin), which he wants to take me completely off, and also taking 4-6 Tramadol. I'm sorry for such a long ramble but I wanted to give as much background as possible. I guess I am just looking for any advice on anything I can do to help not be miserable everyday.

Thank you very much. It is actually nice to have some place to talk to others who have the stimulator.

Hello Joshwife!…and Welcome to the chronic pain forum!

I'm sorry that you are suffering so much! You have found a great forum where we all understand chronic pain. It seems that the implant (SCS) does help some patients, but it also is not a cure-all for ones pain problems, and many patients have to follow up with some sort of pain med maintenance. Of course!... the goal of your Dr may be to eliminate your pain meds, but it really is not very realistic goal in my opinion. Rarely do we see patients with the SCS able to remove all medications.

I suspect that your Dr is part of the ever growing problem that is common place across this country, and is under pressure by the DEA and possibly his peers, to reduce the pain meds regardless of the patients needs.

It may be that you will have to start looking for a more compassionate Dr, however that is not easy at times because of demographics, insurance constraints, and many other reasons.

I would suggest that you take a family member or someone that is familiar with your pain issues to your Dr appointments. It may make a difference in how he treats you.

We see this over and over here on the forum, and it irks me greatly to see Dr's letting their patients suffer more than necessary, because of very narrow-minded views about pain meds. It seems that common sense has flown out the window with these Dr's and they have turned their backs on patients that truly need reasonable relief for their chronic pain.

Please consider the Healing Well Chronic Pain Forum as your home for support. We have a wonderful support group here, available 24/7, and many of them are very knowledgable in several areas of chronic pain issues.

Again Welcome!…and Enjoy the forum!

My best to you!

SE

Hello Josh'swife and welcome to the forum. I'm sorry you seem to be stuck with one of the ever growing population of Drs who think if we have one modality to treat our pain it's all we should need.

I don't have a stimulator so can't help with that but many here do or have had and will be a long to help.

Also we have a wonderful member who is also under the care of army Drs and although she has been in and out lately due to health issues she usually checks in and she probably can be a great source of info for you on getting treatment thru the services. She seems to have really good care and specialists.

Good look and welcome to the place of understanding.

Vickie

Thank you Screaming Eagle. It is very frustrating and depressing trying to talk to this doctor and he doesn't hear anything that I'm saying he is only focused on getting me off the pain meds. Doesn't care to help me through the pain at all. My previous doc told both me and my husband that I may never be off pain meds as the stim isn't 100% pain relief but that the dosage and amount would be reduced. So I just don't know how else to get the doc to listen and actually help.

Yes I see the rep from St Jude for the adjustments to the stim but no matter what setting I use it doesn't touch the pain in my hip which the doc told me it wouldn't help cause it was a hard place to get with the stim.

Unless I am referred out to a civilian doctor, which doesn't happen if there is availability, I can't go non-military otherwise insurance won't cover it.

…you know I got to thinking about what the rep said about it being hard to get to that area of the hip with the SCS, so it would seem that that might be a good argument…and ask him how he is going to treat that pain.

Pain is pain, and chronic pain should not go untreated, unless the patient is able to live with it. I myself could probably go untreated at a 4 or less. I work a full time job here as well…and it is difficult to say the least. I shouldn't be working, and my Dr says I need to consider SSD here one of these days. I'm fighting that mentally and physically, but seem to be loosing the battle as time goes on. I'm so close to retirement…just a few more years…but in reality, I don't think I'm going to make it.

Anyways!…keep plugging along as best you can, and hope that he will eventually come to terms, and treat you properly.

SE

joshswife

Have you tried to CHAMPUS out yet? I know it can be difficult, but if you make a case for it they may refer you out. I was able to get my wife CHAMPUS'd out for her thyroid. There were Navy doctors for that, but we kept at it and they did approve it. I am not sure if it is still called CHAMPUS anymore though.
Did you do a trial of the SCS before the permanent one was implanted?

Take care.
Bill

Hi, I am so sorry you are experiencing so much pain and frustration. I too have a St Jude's stim and mine gives very good coverage in my hips too. I don't understand why your rep (or their secondary backup like I have) isn't able to help you more. My reps will try over and over to utilize all of the available electrodes to get the desired effect. I even have stimulation in places that are considered "physically impossible" because of the location of the nerves, but the stimulation is there no matter what. I most certainly did not know the nerve pathways when they we reprogramming and I was telling the rep where and when I felt stimulation. All she (& my other drs say is "that's really odd". I have only had mine sine December and have had several resets or reprogrammings. In a couple of them, we scrapped all of the old settings and starts over from scratch. That was the BEST situation for me because it removed the rep's reliance on a pattern that had been used earlier. It takes a little longer, but the results can certainly be worth it.

If you can't get help from your direct rep, then you can try the actual company by telephone and explain the problem. The rep may not be thrilled, but that is not your issue to deal with.

Lastly, I'm betting your rep will know a good pain clinic or other doctor that is familiar with their product. My rep(s) both told me they would help me keep PM even if they had to make some calls for me. They can't do the actual referral, but they can certainly tell you who works well with their other clients in the area.

Good Luck !

joshswife

I am glad you are going to try and get into a civilian doctor. I really think this is best for you.

I want to thank you also. The military families are the real backbone of the military. Knowing what all my family went through during my deployments I think it's harder on the family than us. Without your support we couldn't do the job.

Take care,
Bill

I recently had my battery replaced due to it overheating. The St Jude rep wanted to just make it deeper (no longer with St Jude btw) which upset me. Called St Jude, suggested would get a lawyer if it still overheated, 1/2 later another rep called and said they would replace it. Put newer smaller model in and is working wonderful. Lmk if I can be of any help.

Bill-Thank you for your service as well!

We have been through a deployment already, about 3-4 months after we moved to our first duty station lol. It is definitely hard on everyone. I do believe that deployments can either make a family stronger and better or break them apart. For my husband and I it made us better, we had already been married for 9 years and the deployment brought us closer together we he came home.