I had a stimulator (BURST) implanted on 3/2/17. I am having excruciating pain in the right buttocks going down outernpart of my leg to my foot. This pain does not allow me to walk anywhere.....even ny own home. It has not dissapated in any way shape or form. I have had 3 reprogramming.
Tomorow I see both pain mgmt. and my rep/tech. The stim is working but not alleviating pain to allow walking.
Just wanted to know if anyone else had this or is currently having this issue.
Thanks.
I've had a lot of experience with sciatica and stenosis. But those conditions cause pain down the BACK of the leg, not the side of it. Plus, surgery for my L2/L3 stenosis left me with a lot of post-op nerve pain on the FRONT of my thigh. A lot of nerves run through the gluteus muscle in the buttocks so a lot of these conditions have that in common.
All of this depends on which nerve roots exiting the spine are involved. Sciatica usually emanates from L4/L5 whereas my stenosis was at L2/L3. I don't know which nerves affect the OUTER part of the leg. That's a question for a neurosurgeon.
I'd start with finding out which nerves are involved with your particular leg pain and whether this is something that needs attention or will resolve post procedure. For me, the stenosis was down the back of both legs while my post-op pain was in the front. All depends on the nerve roots that got "disturbed" during the procedure.
A great topical medication is Voltaren Gel (RX in the US). Helps a lot with deeper muscle pain. Aspercreme with 4% Lidocaine is more of a numbing agent and helps with nerve pain. If it's strictly nerve pain, then there are things like Lyrica, Neurontin and Gabapentin but all have side effects I will not go anywhere near.
OH boy, I had this too. Is your generator in your right buttocks? My generator was placed too low and while I was recovering I lost weight so that the fat pad under it disappeared and the thing fell right onto my sciatic nerve which caused the exact pain you are describing. My SCS was put in Feb 17. I just had to have the generator put further out on my butt 10 days ago. Beg your pain management doc to move the damn generator, tell him/her it is giving you sciatica. My pain management doc didn't want to move mine either, he tried steroids, and SI joint block, finally I took the blame, told him it was all my fault for losing weight and then he gladly moved it. Typical surgeon attitude, they HATE complications. LOL I am a retired anesthesiologist, I sort of know how to deal with the surgical mentality. Feel free to use me as an example. Moving my generator out more laterally, off the nerve, has done wonders, now the stimulator works, no more re-programming, no more leg or hip pain.
Chico I was on the drugs you mentioned. Gabapentin is the generic for Neurontin. Well I turned into Jekyll and Hyde. Not a fun place to br. Got off that one. The Lyrica did absolutely nothing. I will ask my pain mgmt. doc to look up the report and see which nerve root might be the problem. I am fused from L2-S1,
Thanks for the help.
Hi Lynn. Glad to know you too had this problem. Feels like a hot poker at times. Thought this would be solved. This has definitely curtailed my physical activity.
My stim. Battery is on left side just below my waist. So I don't think that could be the problem. Right about now, I might believe anything.
I am cracking up when you said use me ad example. Please I used you last time I saw the surgical PA about trial vs. implant. Haha. I think part of the problem is my lack of confidence in the rep. Beginning to have doubts about his expertise. Since there is no one else with fresh eyes, I am stuck. Thanks for your help again.
Dee
ROFLMAO, I didn't notice your name on the op... OMG too much flexeril this morning for my neck. But please do reference me and yourself LOL....OK I have a new idea, perhaps this pain is from your paddle pressing on nerves as they are emerging from your spine. Reprogramming wouldn't alleviate that pain. You wouldn't have gotten that pain from the leads in the trial because they are smaller and less likely to impinge on nerves like a big paddle.
OMG Lynn throwing something more in the mix. YIKES. It's worth asking though. Of course by the end of my appointment, they are going to call for a psychological consult. I can almost see that look in their eyes 👀. She has finally lost it. Oh well nothing ventured, nothing gained. LOL
Dee
I had the St Jude with Burst almost 3 weeks ago. I couldn't tell if my pain decreased or not. The incisions pain has finally started to lessen. The chronic pain has totally increased again. Last night I could only hobble around.
I am at my pain Dr right now and the St Jude Rep was here so he came in and totally reprogrammed it. So far I am still having a lot of the chronic pain. Sciatica and down the left leg into the foot.
My Rep said that I was just "hyper sensitive " to pain. I told him NO I wasn't hyper sensitive to pain, I am IN A LOT OF PAIN. I would like to cut his spinal bones and see just how "hyper sensitive " he would be. I doubt he would be able to get his a$$ out of bed.
Dee I wish that I had some answers, perhaps someone here will be able to help you.
Gabapentin puts 20 pounds on you in a month...forget that!!! Lyrica does nothing for me.
I'm fused from L3 to S1; got stenosis at L2/L3 18 months later. Choice was removing all the hardware and re-fusing L2 to S1 meaning 10 days in the hospital and a 6-month rehab...OR...
An LLIF. They insert an EXPANDABLE spacer from your side ("L" stand for "lateral", crank it open with an Allen wrench and then backfill it with a bone graft from your hip. One night in the hospital, zero rehab. Yes, post-op nerve pain for a month but temporary. Pic attached. You can see the fusion below it. Waaaaay preferable to another fusion.
Oh Dianne I am cracking up. You are so funny. I would be thinking the same thing. Hyper sensitive my aunt fanny. I can't wait to hear what he thinks my problem is tomorrow. I am beginning to think that this permanent or maybe I need a new tech. The Tizanidine is the only med helping. One drawback is once you take it, it is lights out for a few hours. I can't function.
Wish me me luck tomorrow.
Dee
OK I really dislike it when chronic pain patients are treated this way, and I really dislike it when mere technicians do it and your PM doc allows it. There is no such thing as "hypersensitive" to pain. That term drives me NUTS! There are people who will tolerate more pain than others. Great for them, but just about any person put under constant severe pain will break after a time, even the most tolerant of us. That was inappropriate to say to you, Dianne. I have to say I am really unimpressed by these paddle stimulators and I still have a problem understanding why you have to get the paddle if you can get the trial with the leads. I will say the leads aren't quite so rosy, I did realize I am taking pain meds for my neck and so I my SCS is working with pain meds. I am fairly certain that if my docs took away my pain meds I'd not be a happy camper. I have 90% pain relief now, but it is with pain meds. What is bugging me about both of your recoveries is that you aren't getting any relief of the pain the SCS is supposed to relieve. It is no shocker you have postop pain, but this leg pain should be taken care of by the SCS, not exacerbated by it. If it doesn't go away when you turn it off, then it isn't due to the stimulation being too high, or in the wrong place. I am thinking it is a mechanical issue of the paddle pressing on something, like a nerve root.
LOL Dee, they will tell you to quit talking to online retired PM docs...
I am one person who has zero tolerance for pain. So for me my pain is intolerable, maybe for another patient not so much. Since there is no narcotic medication that I can take. So for me and many others, we are looking for something, anything to alleviate our pain. These stimulators were presented, for myself, with the type of pain I have as a God send. 1) first trial with a wonderful and positive Co. was a no go. No ones fault. Not every stimulator is meant for every patient. 2) second trial turned dismal pain in 6 days to a modicum of pain relief. On cloud nine. Finally, I could live with what pain not covered. 3). Stimulator implanted totally different from trial. As if right now there is not much joy in River City.
Now we look to to what do patients like myself do or go. That is my million dollar question. Only time will tell. For all of us, time is all we have. So Dr. Tomorrow and will listen intently to what happens. Happy for me, so far, my PM is totally believing in my pain. That's all folks.
OK I was so curious I did some reading. The paddle leads are "preferred" for two reasons: 1. They can be attached and so are less likely to be displaced by the patient, this is because the surgeon is doing the laminectomy and can get into the epidural space to anchor down the leads. 2. The paddles are basically one sided and the leads aren't so the paddles only stimulate where it is needed and the leads stimulate all 360 degrees. The counter argument is my leads are attached by an anchor so they aren't just floating in the wind in there, and so what if you waste some stimulation, just turn the dang thing up more. The problem with the paddles are they are too big. St; Jude was just bragging in late 2016 about FDA approval of a new slimmer paddle lead that could be guided in the epidural space with the possiblilty of no or only a bit of laminectomy. That might turn out to be a really good compromise between the two, because I am still suspecting more than ever that there is a mechanical problem going on. I read a review article written in early 2016, so it was the early stages of high frequency ( Nevro) and burst and they noted the biggest problems were post op infections and mechanical problems including slippage of leads and leads pressing on nerve roots. Unfortunately the article didn't pull out paddle versus leads.
You always seem to find me with MORE info to lay on PM today. I am betting there will be no answer. I am going to copy some of what you posted. Where do you find this info. I have been an eager beaver in looking asking google differences between leads and paddle. Not finding. I know there is info out there. But I will take your info any day. Pulling out my big index cards. They see those coming and look puzzled. Gotcha I think. Probably not. LOL
How are you feeling these days? Hoping pain is minimizing. Well gotta get my act in gear. Let you know how it goes when I get back. Leaving hubby home as he is ready to do some battle especially with the rep. Oh boy. Mad hubby not good. Have a good day.
Hubby impressed with info you have. I have copied and formulated my questions pursuant to the info. If you could only be a fly on the wall.
Wish me luck in maybe finding some solution to this horrible unending pain. Thanks again for the info.
I think I am just a better googler because I know the medical terminology to use. I also end up pulling up medical articles from journals that I can read like a novel, but would be really too technical for most people to get through. But, I get the info from basic google searches and also from my membership as an MD on medscape. That's it. I also look at the clinical trials site to see what's in the wind. I will be most interested to hear what happens. I agree on leaving angry person at home, that gets you no where. It was like me trying to get my generator moved, I got nowhere until I went in claiming my responsibility in displacing the thing with my weight loss, getting the rep to side with me on it. Then I had the dang thing done in a week. Before that I was getting put on steroids, having nerve blocks, anything to not move it. You have to be strategic in how you approach things, being armed with intelligent questions is one thing, slinging angry accusations is another.
Dee, I will be waiting here in my nightgown and robe for your return from your PM. We triplets need to stick together and find out what exactly is going on.
Thank you both, Dee and Lynn for your support when you backed me when the Rep said that I was "hypersensitive" to pain. What a Crock of ####. He was upset with me when he first came into the exam room and he started lecturing me. Here is what happened.
Last Friday I received a reminder call from my PM, I asked what the meeting was about. I said that I had already received a new pain med prescription a couple of weeks ago and I still had plenty. He said that he wasn't sure either so I asked if the Rep was going to be at the meeting, again he didn't know. When the "nurse" took my vitals she asked what my pain level was, I said it was an 8 and that was after taking my Oxy. I casually asked if the Rep was in the building and she said yes, I was still trying to figure out why I had the appointment. I just couldn't remember what this appointment was for when it was scheduled a few weeks ago.
Then a few minutes later the Rep walked in and told me that I need to call the Reps directly and not just pull them in when they are there to see other patients. I told him that I asked last Friday what the appointment was for and if they were going to be there. I asked again today and thought that I would just get an appointment scheduled. He continued to lecture me. Now I am not someone who likes to be lectured, he was not my father and I never asked for him to see. Me at that moment. (I didn't say that he wasn't my father). I did tell him that I was only wondering so I could set up an appointment, I never thought that I would be seeing the Reps today. He did spend a lot of time reprogramming me and that is when he said that I was hypersensitive. Oh really? Hmmmm. When I go to my physical therapy they hook me up to the large machine that is sort of like a giant Tens unit. When they hook me up to the machine I go from start to the max level immediately. They have told me that no one else can handle that much and especially when it goes up from the start. So now, who is hypersensitive?
On the way home I started getting sick, I don't know if it had anything to do with the adjustment, Lynn perhaps you might know. When we were leaving the pain Dr office I started feeling strange, out of sorts and confused. We stopped to eat because it was after 1 p.m. And I still had to go to get my mammogram. While ordering my lunch I was so confused I had no idea what the wait staff were talking about and I found myself getting upset. I had to keep asking her to repeat and explain what she was telling me.
On the ride home I kept telling my husband that I was feeling very strange and thought that I was going to get sick. When I had H Pylori a few years ago we kept "barf bags" in the SUV. I grabbed one and "got sick" a couple of times but not very much. Walking into the house, I was walking like I was drunk and was so confused. I got into my night clothes and was going to bed but felt that I was going to get sick again. I lost my cookies a number of times and then went to bed. I fell asleep almost immediately and slept for several hours. Is it possibly that the adjustments could have caused that type of reaction? I slept soundly last night and my husband woke me at 9 a.m. to see how I was doing. I feel better today but I would really like to know what happened.
I changed the setting on the device last night and again this morning, I still have not received any relief. In a couple hours I will probably move the number down again.
Dee, here is me looking forward to hearing how your appointment went. Lynn did you already tell us that you also met with your PM about your neck? When will they be able to do that?
Thanks fellow triplets,
Dianne
short and sweet rep will call tomorrow. I have typed this twice and twice it was erased. So tomorrow when I can think rationally I will try and reconstruct my day. Right now now happy camper. Going to take my new meds and go to bed. Talk in am. Too angry to try and write it again. Nite nite.
Good night Dee I am so sorry that you had such a bad day. I will be looking for your comment tomorrow.
I have been making many changes on my unit but I am still getting a lot of pain. The pain is very strange, I have a pressure feeling in my back and leg, my mood seems different too. One of my Reps mentioned that if I was changing my moods then I need to turn the stimulator down. Every 4 hours I have been turning it down with no change. I will continue doing that again tomorrow.
Ladies I hope that both of you get some pain relief.
Dianne
Good luck. Get a good nights sleep.
Dee