Nerve Stimulator surgery (BURST)
Posted , 8 users are following.
March 2 had BURST NERVE STIMULATOR IMPLANTED. The surgery went well. They were completely open and honest about the pain I would experience. Boy were they right. Since this stimulator is implanted in the Thoracic region with the battery in my left hip, needlesstosay have not slept on left side since being home. I am today 11 days post op and can't wait util tomorrow to get all the staples removed. I never realized how unforgiving a piece of metal can be, They do not give, bend or move with the body. So when you reach and you realize, that's not going to happen, you look for a family member or your trusty handy, dandy picker upper pole with rubber suction cups on the bottom. That has been my life saver to this point., Tomorrow snowstorm and all, these little suckers all 15 of them are coming out. Talk about itching. Yep. I have been able to shower but no tub soaking of any kind. Makes sense. We have turned on the stimulator and had it programmed. I have tweaked and un tweaked it my self. I guess as the swelling and healing continues more adjustments wil have to be made.
Would I do it again, YES except, better pain supressent would head my list when going home from the hospital. I am allergic to most, if not all, of the heavy duty stuff,so I have been relegated to Tylenol and an occasional muscle relaxer for the spasms.
Unfortunately for me, one of my reps is undergoing her own surgery for another issue, and getting hold of the one who is supposed to be around when needed, has become an issue for me. I let it go for two days, then was ready to rip someone a new one. No return calls, Even the Dr.'s office didn't call back. I've been on this earth long enough to know, I will give you enough rope to hang yourself and this I did. The first to respond was the Dr.'s office and boy did they get an earful to the tune of, "If you are not there, the whole damn office can't listen to utter pain from patients seeking a little response. Not my problem!" Boy did their tune change. Complained that I was not able to reconnect with tech since leaving the hospital as he said he would call and meet me back their to reprogram Stimulator. Not two minutes later the rep calls. Not a happy camper that I had complained of his lack of attention to my pain needs regarding the Stimulator. I was cool, polite and curt all at the same time expressing my concers as follows, "I am sorry you are short handed, NOT MY PROBLEM!" I then explained, "If that be the case, then you, as the rep/tec for this Stimulator should be making you voice heard to the powers to be that you have X number of patients and cannot possibly help them all as your are short handed." AGAIN NOT MY CONCERN. I TOLD HIM, "iF YOU ARE THAT SHORT STAFFED, THEN YOU NED TO CUT BACK ON THE SURGERIES YOU ARE CURRENTLY DOING, TO AFFORD THOSE PATIENTS ALREADY IN THE PIPELINE WITH DONE PROCEDURES HAVE ADEQUATE HELP WHEN THEY CALL."
So now with my tweaking, not going so well. Waiting until staples removed tomorrow and then will call and see how the resonse time goes. If I start to get a run around, I have no problem locating Corporate for my area and pitch a fit. Then will pitch the same fit to the Surgeon. Just found out from the rep. that it will have a new name shortly as thie product section was sold to ABBOT. Still don't care what problems Corporate has. These devices are TOTALLY PATIENT ORIENTED. Now if we can get back to the pre-op settings, where I was getting relief, then I shall be back on here singing high praises. It is not the device, right now, it is the lack of techs available to handle the volume.
So if you are thinking of nerve stimulator, I say go for it, for me there were and are no other options. Good luck to all to whom I have been speaking with and for those who ae about to unergo he procedure. The pain shall pass and life will go one MORE PAIN FREE.. ENJOY YOUR DAY.
Dee
1 like, 82 replies
allaroundanne DJ1976
Posted
I don't get why the paddles take so long to work, unless it is the inordinate amount of postop pain you guys were subjected to with the bone cutting to get them in. The leads are much easier to place, you just thread them up the epidural space. I can already tell that mine are working great and now that he's moved the generator off my sciatic nerve, all the strange pains I thought the stimulator was missing like hip pain or bone pain or even some muscle cramps, those were all from that stupid thing sitting on a major nerve to my leg. So, as soon as I get through the post op pain, I will basically have very little back pain. Now I need him to fix my neck. LOL, it's always something. At least he appears to be moving towards a second stimulator for my neck, threading this catheter in my neck for a third steroid block to see if he can get something past my bad boy bone spur is a step towards threading stimulator leads past it.
BTW Dianne I am jealous, I can't shower yet and feel very scuzzy. Going through all that we do you come to realize the small things in life that other people take for granted, like showering. I am hoping I get the shower go ahead on Thursday and that we can quit changing bed linens daily then too. Did I mention my doctor is a germophobe?? OH and after my performance in the recovery room, which I can't remember but he can, I am probably going to have to do an awful lot of talking into to get myself a second spinal cord stimulator because while putting me to sleep is no problem, noone will want to wake me up LOL....
DJ1976 allaroundanne
Posted
Glad to hear you are doing well. Keep up the positive healing.
Do you think you need another one for your neck?????Yikes. You are a better woman than me. Never again do I want to go through this again. Not the paddle. You take care and keep getting better. I will try to catch up. But not too sure about it.
Dee
dianneg DJ1976
Posted
Well it is about 7:15 p.m. Here and this is the first day that surgical site for the paddles hasn't been screaming in pain, The area now just hurts like HE$$, the pain just wears me out. The area where the battery is has started to hurt a lot, this is the first time that I have noticed it. It has hurt but the paddle area has been so bad that all of my pain sensors have been going to that spot. Since the peddle pain has started to decrease the butt pain has totally started to do a little screaming tonight. The only thing that I did today was to take a shower and dry my hair. I usually use a flat iron to straighten out my curly frizzy hair. I just didn't have the energy to do that today, if I feel a bit better tomorrow then I will use the flat iron on it so I won't look so scary.
I Keep falling asleep in my chair in the family room, I think that I will go to bed now. I started this at 7:15 p.m. And it is now almost 8:30 p.m.
Wishing all of you a pain free night.
Dianne
DJ1976 dianneg
Posted
Sleep 😴 well my friend. I know what you mean about the battery pain. Remember you are 2weeks behind me. Mine, thank God has no pain. It feels to the touch like a battery. I can almost trace its outline. Flippin weird. No thoracic pain to speak of. Just the same butt pain going down the right leg. If I overdo, the pain gets hot and leg feels weird. No feeling. Strange, but pain lets me know who's in charge. Maybe I will up it another to either 9-10. He said I could go to 13. OMG 😲 if I hit 13 and still have pain. Then what. Oh Lordy what did I get myself into.
Lynn, hope you have a restful night. Well it is 1am and I am wide awake. Maybe I will try and go to bed. Sleep tight my buddies.
Dee
allaroundanne DJ1976
Posted
Yes, now that I see how well the thing is working I REALLY want it bad for my neck. I mean I have frigging NO pain in my back, no leg cramps, no bone pain in my legs, nada. I almost forgot I have hemochromatosis. It's wonderful and I haven't had to monkey with the settings on the stimulator either. I have just left it at the setting it was at before we moved the generator. My only pain is in my right butt cheek where I have the old pocket and the new pocket further out. Plus my stupid neck is in knots. In two weeks my PM doc, who is very cute btw, blonde hair, green eyes. He is going to thread a catheter up from C6 past my huge bone spur and herniated disc at C4 to deliver steroids and lidocaine. Hopefully that will help my pain, unknot my muscles some and also give him some idea of whether he can slip the two lead system up there or not. I am going to start my begging process tomorrow when I have my first post op appointment. He no longer thinks he was at any kind of fault for mis-placing the generator--I took full blame for that because I know how all surgeons hate taking any blame. This will make him more likely to take me on for a second SCS. He's told me he's got somewhere around 50 patients with two. The way I figure it, I've got a genetic reason for this and I am only going to get worse, I might as well get something in for the pain. I really like the St. Jude Burst, for me it is working great. I really wish it was working better for my buddies. I don't get why they had to do paddles on you gals. I am suspecting it was previous surgeries buggered up the epidural apace so no one could thread leads up there. But then, you both had lead trials didn't you? How did they get those lead up? If they got the trial leads up then they should be able to get the permanent ones up they were about the same size! So I, for one, am totally confused. I don't get the paddle thing at all. I don't get the need for neurosurgeons, just do leads and keep it a pain management doc thing done by docs like me, anesthesiologists. That's my story and I'm sticking to it! Oh who sang that? I used to love him....Colin Ray. LOL
Lynn
Nitey Nite
DJ1976 allaroundanne
Posted
Lynn.....my sentiments exactly. I don't think this paddle is working for me. Som tomorrow I will turn it up till it hurts and I feel it. It's the only way I can be sure it is on. See pain doc on Tues. I plan in a long and winding (Beetles), conversation on this topic. As far as I am concerned, they can take it out for all the help I am not getting. This is my pity party.
OK I'm over it and so happy you have such great success. I am sure your neck surgery will also be successful. Mon that hi note.
Nite nite.
Dee
dianneg DJ1976
Posted
Hello Ladies, I thought that I would check in with you. I am still having pain from both incisions but not as bad as it had been. NOTHING could possibly be as bad as all of that. I am still taking the Oxycodone 20 mg but I have been trying to take less. I need to figure out if this is working or not, so far I am not sure. Last night I just couldn't get comfortable and didn't get to sleep at all, I ended up taking a pain med at 5 a.m. I finally fell asleep around 8 a.m. And slept for a couple hours, I have some nights like that but thankfully not very often. Today I am just staying in bed but I won't be trying to sleep, I find it hard to sit in my chair in the family room. For some reason it bothers my back, when I put my bed pillow behind my back it helps but not enough to sit there for very long.
Lynn, I'm sure that you can tell that Dee and I are both so jealous but also very happy for you, plus you still have another issue with your neck. Have you talked with your pain Dr, is he going to get you set up for the SCS for your neck?
Dee have you had any change since you turned your SCS up? Will they consider taking out the paddle and replace it with leads? I do hope that you will keep trying longer before giving up, with all of the pain that we have gone through with the surgery, it will take an awfully long time before I will consider giving up. I don't think that I have any options left that I haven't already tried.
Once I get the go ahead, my husband and I are going to join the Y, it is about a half hour drive but that is the closest place that I can try. I need to lose about 50 pounds that I gained and I think that between, yoga, old farts exercise and old farts pool exercises it should help both of us to lose weight and get limber enough to help with the pain. At least, that is what we are thinking about trying. If that doesn't help then I will probably slink into a bad depression. Since it has only been 2 1/2 weeks since the implant it is way too soon to tell if it is working yet.
I'm not sure if I told you both that I had breast cancer last year, I was fortunate that it was caught early and I only had a lumpectomy (and a 2nd surgery where my surgeon had to go back in and take more margins out). I had 6 1/2 weeks of daily radiation treatments, prior to the cancer I was doing fairly well with my back. I think that the daily trips to Fort Worth (65 miles each way) and the positioning on the table started my back hurting all over again.
The implant of the stimulator was my 9th surgery in 6 years and so many, many procedures done. It is hard to even remember when I wasn't hurting, I still just shake my head with disbelief that all of this has happened. I was in the hospital with pneumonia a couple of years ago even though I had gotten the pneumonia shot. I had H-Pylori at the same time, I had never even heard of that before I had it. I had shingles, even though I had gotten the shingles shot. My foot had been in a cast at the same time because I had 2 fractures in it, I went from osteopenia to now osteoporosis, that might be the reason why I am having the back issues now, I just don't know.
Here I go again, whining. Sometimes it is just hard to not do that, I think if I can get my weight under control then I will be able to be more active and that should help. I will try not to whine too much, but some wine does sound fairly good about now. We have never been big drinkers but sometimes it sounds good. But, of course being on pain meds I can't have any alcohol, ok, sorry more whining. :-)
I go back to my pain Dr tomorrow for a check up, I'm not sure if the Rep will be there or not. Actually I'm not real sure why I am going in, I had just seen my Neurosurgeon this past week and he hasn't released me yet and I have enough pain meds so I guess that I will have to wait and see. I have to get my 6 month mammogram on my left boob while I am in Fort Worth too. It is rather strange getting just my left boob done every 6 months and both once a year. Oh well, I might as well get the under the hood check up while I am at it. LOL
I look forward to hearing from my friends, let me know how you both are doing. Dee, I never worry about mentioning to you to stick up for yourself, I think that you are able to do that very well already.
Dianne
allaroundanne DJ1976
Posted
Oh Dee, my neck has gotten so much worse this week. I think it is all the laying around in pain from the surgery plus the couple of PT appointments did help and Dr. germophobe won't let me out of the house! Seriously, he called my PT's office a "repository of germs" and refused to let me go for any PT for a week. I have my first post revision surgery PT tomorrow, and boy do I need it as I sit here typing with my head on a heating pad. I am waking up at night to gobble flexeril and gabapentin it hurts so badly. Just when you fix one thing- my back and legs feel great. In fact, if my neck didn't hurt I would want to go on some good long walks and build back my strength and stamina. That's how well my SCS is doing now. I can actually lay on my back now with the generator now out to the side, it doesn't hurt. But something always has to spoil it. LOL my 2 daughter's birthdays are this weekend and the younger one turned 25, she is horrified she is "OLD" LOL. Yea, right, that is sooo old I told her. Meantime her younger brother who is turning 24 in July is trying to pretend he is still in college and rather than move in with his girlfriend he is moving in with some buddies like he is still in college. I have quintessential millenial children who just can't grow up! At least they can't live in my basement as Floridians don't have basements. I do feel badly I passed on the hemochromatosis gene to all 4 of them and it looks like 3 got the one from my mom that has the attached arthritis gene. They may be joining us on this forum someday
dianneg allaroundanne
Posted
Lynn,apparently you were typing a response to Dee while I was writing my book above your post. I am so sorry about your neck hurting worse, are you sure that we aren't triplets separated at birth? If it wasn't sad it would be rather funny.
Take care
DJ1976 dianneg
Posted
Dianne and Lynn gonna do a two for one post. I am getting lazy. Yesterday I did something dumb. Now you would think as I am old as Methuzla (sp) I would know better. This pain is wearing me down, so I took 2 Tizandine HCL 4mgs each. Talk about out in space. Oh yeah. Crashed in recliner for what seemed like an eternity. Then the cramping. OH my Lord, felt like I had taken colonoscopy stuff. Boy what a night. Today I feel like I fought a couple of rounds with any puncher. Here it is 8:40pm and I'm feeling a little more awake. Now one would think no pain....wrong. I have no pain if I just sit or lie down. As soon as I start moving, it's back.
My rep says to me the other day, "Maybe you have a hip problem." I think I wanted to clock him. Those words of wisdom, because he can't figure how to get the tonic and pulse settings to the BURST. So major talk,on Tues.
You both have any advice??? I am fresh out of ideas........Lynn I love your germaphobic Dr. He won't let you do anything. That could be the reason you are doing much better than me. I slept almost day today. Now I am ready for bed again. too can sleep on my back. The other morning, I rolled over to my left side no pain so fell asleep. When I woke up and saw what I had done and tried to roll back. OMG pain, pain. Guess they were right, it takes time. Well that's my tale of woe.
Dianne is right, we are a little jealous of how great you are doing Lynn. Keep it up. Your neck will be next and then we can call you the STIMULATOR WOMAN.. .......Dianne we are triplets who got sent North, South and mid South. Or we are just 3 doozies with the same crappy spine.
You two have a good night. 🌙💤 😴 and I will update after I see Dr. And Rep on Tues.
Dee.
DJ1976 allaroundanne
Posted
Now I know we are related in some way. My sister also has hemochromatosis. I always tease her that she got all the crap genes and I got all the surgery genes. Sorry your neck is being a pain in your neck. LOL. Couldn't resist. Boy that germaphobic Doc would drive me crazy. 😜. I have no disernable pain from the surgery. But. Now that swelling has gone down at the battery site, I can feel and trace the outline and feel it might have moved. I see surgeon in two wks. Will ask them to check it out. If I move the wrong way to quickly I get a sharp twinge. Not the greatest.
So the the reprogramming on 5/1 no change. Pain still there, but now more intensive to the point of not being able to walk. I will be discuss this with the surgeon's office. Also will ask, 'When do we throw in the towel on a stim not working." Also maybe another tech to program as the tech and I do not really get along. I always feel as if he's doing me a favor by agreeing to see me. Frustrating.
Take it easy and don't overdo. Hope you get a green light to hit the pool. That is also on my hit list too.
Hang in there we will all get better sooner or later.
Dee
dianneg DJ1976
Posted
Dee, I have an appointment on Wednesday for another adjustment and refill for my meds, more peeing in a cup. Oh the indignities of it all, I feel like bringing some pee in a jar from when I first get up in the morning. Better yet I could have Pete put some of his in a cup and bring that. But they will probably know that. It wasn't coming from me plus he wouldn't have any Oxy in his system, I guess that is why they want us to pee in the cup. I think that it is so we don't try to sell it on the streets. I have no idea why anyone would want to take any of the meds. I don't feel anything other than hoping for a reduction in pain, which I don't think it is working anymore.
The good news is that my incision between to shoulder blades seems to be healing now, I don't have the screaming pain that I had a couple of weeks ago. The battery is a whole nother ballgame and it isn't a good one. I have been able to feel the battery for weeks and it creeps me out. I think that the battery is pushing on a nerve or sciatica because that is the area that is causing the most pain, plus the pain is going down my leg into my foot. Just like it did before the surgery.
Why did I ever bother to have this surgery, I can't say that it is helping me at all. It has just made the company and Reps a S**t load of money. BTW do any of you know exactly how much this thing has cost? My Medicare is so slow to send any information on what has been fully paid for but I would like to know. If it is something that we still owe they seem to put that in from of the rest so they will get paid ahead of all of the other claims.
I go back to my Neurosurgeon I think on the 22nd, he wants me to have it X-Rayed before the appointment to make sure that nothing has slipped. I do wonder about the battery because that is the area that hurts the most and is causing the pain down the leg. I am almost afraid to ask this next question......If it has moved out of the "pocket" does that mean that they will have to reopen up around the battery???? Oh I hope not. Everything hurt so bad the last time, I can only imagine what it will feel like if they have to open me back up. The "pocket" wasn't all that bad as far as the pain went but then again between the shoulder blades was the screaming white pain so I hardly noticed the "pocket". If they have to reopen it up I am sure that both of you will be hearing the screaming all of the way to the east coast.
OK, I think that I saw another notification from my triplets so I will go check it out too.
Dianne
DJ1976 dianneg
Posted
I have been saying even out loud that having this surgery was a big mistake. I so feel your pain. I too have now been able to feel the battery and it's feels really weird. Oh Vey.
aylaleilan87692 DJ1976
Posted
Greetings DJ1976,
I was seeking info regarding the BurstDR Simulator. For the past 20+ years I have experience constant pain.
Just this Nov 2022, i was asked to try the lidocaine injections by my Pain Management Doctor. I'll try anything to het away from this pain. The procedure was a total failure, the pain was exacerbated.
The next step, per my doctor, is to try the BurstDR.
How are you feeling now? Would you mind sharing the most positive and negative aspects of this procedure with me?
i did read the messages that followed your initial entry. I am now terrified about this procedure... Am I looking at trading one pain for another? will I ever find relief?
Most people do not understand, if you look well on the exterior, the assumption is you're well internally and you're either faking for attention or a hypochondriac. Add psychosomatic too. It took me a better part of 15 years to get my physicians to agree that I had a problem.
Forgive me for prattling along...
I would genuinely love to hear from you.
Kindly,
Aylaleilani
Guy320 DJ1976
Edited
They suggested this to me instead of a decompression surgery. Not sure I want something sticking out of my back. I was always fearful of continued post op pain.
I hope you find relief for this. seems easier to do a decompression of my L3-4 right Neuro foramin space for the severe stenosis causing Radiculopathy and Neuropathy . Thank god for pain meds.