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
Dee, I didn't get what you were saying before, that the trial was with a lead, not a paddle, so you really didn't get a paddle trial. How the hell did they know a paddle would work like the trial lead did? LOL sometimes I can be a bit slow, I AM still on some topomax which I call dopomax LOL.... You are quite right. My trial was with a lead and it was very similar to what got put in permanently. You really didn't get a fair trial of what got put in. I would bring that up. I can tell you what they are going to say. Studies show that the paddle works the same way on patients as the leads do. That means, in general, when you lump together a bunch of patients, most of them work the same. But you are an individual and in those studies there are individuals who fall out of the majority in whom the paddle didn't work like the leads. They just leave them out because they are an anomaly. They will report, 90% of patients got relief. You are a 10%.
Nancy, you mentioned Nevro, I had a Nevro trial and it was odd. It relieved my arthritis pain but didn't touch my muscle spasm pain. Hemochromatosis causes both. My pain doc was willing to put in the Nevro because he said that no SCS was meant to get muscle spasm pain, but he said that burst technology was so different that it was worth a trial. So, I said yes, not expecting anything different from the Nevro. I was SHOCKED. I woke up from the sedation and had NO pain at all. I had a 12 day trial and it stayed that way, I had a bit of hip pain that we got rid of with some reprogramming, otherwise I was pain free. It just goes to show you that you need to be open to trying out other models than just one if the first thing you try only gives you 50%. Don't settle for 50% because your doc, or docs in general settle for that. I am telling you it is your body, you should seek 100%. I think it's good that you wait for these clinical trials to come in with results rather than become a guinea pig yourself if you really want a Stimwave. Stimwave will use these trials to work out the bugs. And there will be bugs. You'd rather get the de-bugged product than the untested product. Those trials won't report until this summer. In the meantime why don't you do a trial or two of the leading SCS? Like the Nevro, St Jude Proclaim, Boston Scientific? See if the technology helps you at all. You do sound like a candidate, but you may find out from the trials that it doesn't help you at all.
DJ1976 allaroundanne
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Hi There.....I am sorry I did not explain it clearly. My trial was leads now I have paddle. They aren't in the same ballpark. I have absolutely ZERO pain reduction. I better be getting me some BIG TIME relief come tomorrow morning this Senior citizen is going to lose her cool.
You were correct in your statement how can I be counted in any trial, when the implant is not the one used in the trial. I have already written 3 items so far that definitely need clarification. Talking about a fair trial, will definitely make my list..
I thought I was Super Girl this morning. Did some food shopping. By the time I got home, I would have bitten down on a piece of wood while I yelled. Nope this old grandma just barely could walk. Told hubby, I am done. Never shopping till I get this damn stimulator lowering my pain level. I don't even have a measly 5% less pain.
I am not getting good vibes about getting out of this stimulator what I thought I would. My question will be, "If I don't get ANY reduction of pain in the 40% or better, then where do we go? And what else is in the pipeline for patients like me." Going to be heavy duty talking in the am.
Sorry I needed to vent and no pain meds. work, so I am kinda grouchy.
You all have a great and pain free day!!!!!!!
Dee
allaroundanne DJ1976
Posted
I do know that what was next for my lower back if the SCS didn't work was to have one of those epidural drug pumps put in. You start with a trial too, the doc puts in a catheter and they test what drugs and what doses work for you. They then put in the permanent catheter and tunnel it to a pump resevoir that they then fill each month and program it remotely to give you a daily amount of drugs directly to your spinal or epidural space, whichever they choose, usually it is spinal. They give such a very low dose you get much less side effects than you do orally.
So I went to my first PT appointment for my neck today, I am too knotted up to do much, so they did some massage that hurt like hell and then put me in traction for a total of 16 minutes which felt good at the time ( this morning) but now it feels like my head is not quite tethered to my body anymore LOL. I am afraid to turn it to fast lest it fall off, it is a very odd feeling, she told me to take it easy today, I can see why. I am not sure how this is helping things....
I get my revision surgery tomorrow and I have definitely decided on a tummy placement for the generator. I based it on not sleeping on my stomach, being afraid my doc will overcompensate and put the battery up too high this go round on my back and finally, if I get a second SCS for my neck, that generator will be under my clavicle, and so be in front too. So, wish me luck! Oh, LOL I live in FL, so it's warm already. They called me yesterday with my surgical time and last minute instructions and they had a new one, " No flip- flops". I said , why? All Floridians where flip flops LOL. Apparently they had a still sedated patient flip over their flip flop LOL. So, no more flip flops....I can't even figure out how that happened as they put you in a wheelchair from the stretcher and wheel you to your car? When did the patient walk??? Oh Well, I am a bit nervous to go through all that post op pain again, especially with the extra tunnel to my belly. Plus I hate Percocet, I get so constipated, but with the stupid new narcotics laws that is what I have to get, I can't just get more of my Norcos, I have to get something stronger. Stupid, I just need to be able to take two Norco instead of one. I wish I felt better so I could volunteer for the President's initiative on drugs and set them all straight.
Wish me luck!
Lynn
DJ1976 allaroundanne
Posted
Lynn.. Just the thought of having to refill weekly, it would make me feel like a car going in for a top off of oil. Only now drugs. Secondly, Next to snakes, I hate needles. Sorry Charlie this Oldie not biting the bullet on this. We would have to come up with a new plan.
Next, with my luck they would put that generator in my stomach and It would look as if I have an ALIEN living inside. My girls would never let that go. So Nope.
Your Dr. and his flip flop joke, had me laughing here. I have no idea of what you look like, but my vivid imagination is running wild with the thought of you flip and flop on the table. OMG 😲 just the visual has me cracking up. Thank you so much for the laughter. After the day I have had, I needed this.
Listen tell your Dr. that you want a tummy tuck after they put the battery in, you don't want to look 👀 lop sided. 😂. Sorry I can't resist.
I wish you all the best tomorrow. They don't waste time. You will be just fine of that I am sure. Be well positive thoughts 💭 only.
Dee. PS. if you are not on over the weekend Have a Happy 😊Easter 🐣 🐰.
allaroundanne DJ1976
Posted
Well, if my abusive ex-husband hadn't already made me sign a contract agreeing to get breast implants and a tummy tuck in order to have my fourth child, your idea to get a tummy tuck with my generator reivision would have been a good one. But I had the tummy tuck to get my precious Noah, best abusive contract I ever signed. Anyway, the second I got there I announced to the damn grouchy senior tech representative my decision and he got that funny look on his face, the "bad idea" look but the " how do I explain the to a retired board certified physician without insulting her in front of her doctor" look LOL. I was already in a world of pain because some stupid administrator had decided that these chairs with NO padding looked great in the waiting room and we were all waiting for 2 hours. I was basically curling in the fetal position in pain. I was in no mood to argue much, so I just said, what's wrong with my idea? He said, well, that is wear they used to put it, but we had a lot of problems with the generator swimming around. There is nothing to really hold it well. Plus you have to add a link to the leads to extend them which adds length and you increase the chance of twisting the leads and just problems with longer leads. He said that is why I saw no problems with abdominal placements, they stopped doing they a decade ago. So, my doctor asked where most of my pants have their belt line-- which is low waisted, so insteat of moving it up, he twisted the generator on its side and moved it way laterally ( to the side of my body towards my love handles). I then informed him that I was going for another 35 pounds off, I really am going for 30 more off- I was 45 overweight from inactivity, 5'5'' 180 lbs with 10 lbs of implants). Now as my fatpads on my hips shrink the generator will still just head behind my hip socket, nowhere near the sciatic nerve. Despite the post op pain, I can already tell the difference in pain. The worst part of the entire experience is, I was in so much pain from waiting on the damn chairs, the nurse anesthetist loaded me with morphine and I had a really bad nightmare, I woke up not knowing where I was still thinking I was in the nightmare. VERY frightening. I thought I was imprisoned somewhere. I was apparently very agigtated they almost put me back to sleep to awaken me again hoping for a better awakening LOL. That nightmare was so very vivid, I can remember it now. I think it was a combo of too much time there, too much pain, those damn chairs in the waiting area, a lot of anxiety over where to put the generator and the morphine. Phew... I am glad that is over. Nice to be here with my newfound buddies. Love your company, ladies!
Lynn
DJ1976 allaroundanne
Posted
Lynn......Glad it's finally over for you and no Alien 👽 in the body. I know exactly what you mean about the waiting room chairs. Orthopedic Dr.'s have the best chairs. They are like mini hi-chairs. All you have to do is just slide you butt in one and your all set. Oh no not the Neuro-Surgeon. The waiting room chairs are not too bad. Not great but usable. Now one goes to check out and sit, I thought my body had gone to Hell and forgot to tell the rest of me to come on down. The receptionist says "We know". But are afraid 😳 to say anything." Well not me. I even researched it and brought pictures..GUESS WHAT. "Same stupid hell chairs."
Now for my day. Remember I said, they were going to send a different rep to meet me at the surgeon's office 👨???. Got a text at 7:30 am that my rep wasn't going to able to link up with me as he had a procedure. "What I say to hubby?" He wasn't coming someone else was. Well now no rep to reprogram this damn stimulator. Now I am flipping mad. No rep no tech no relief. What the hell else can go wrong on Good Friday. It was as bad as it gets. Get to Surgeon's office. Talk to the girls, as I call them, Geeze they could all be my kids. I was p*ssed 😡 and wasn't sure I could keep it together. So I went through my litany/tirade with my big giant index cards with my questions on them. SILENCE IS GOLDEN. They all said waiting for more than 1 month between tweaking or re-programming is not enough. So now I had no idea when the hell we could link up. Next my cell phone 📱 rings "text message". Told the girl, not my husband maybe the tech was lost. Nope 👎 it was my rep. "Are you still there?" We look at each other and I text back Yes." "Be there in 15 mins." No how about 10. He showed up and we started programming. The controller that he uses wouldn't let him get into it, fixed that via tech service. Next my controller wouldn't link to his back to tech service. By this time he was getting antsy 🐜. I say " I have no place else to go, so we are not leaving here till we re do The programming. KATIE BAR THE DOOR. Well it took 1!hour phew 😅. My body felt like I went four rounds with a boxer, not dog 🐶 but fighter . Left sayin I will give it one week. I am exhausted. Now just have to wait and see. I was not a candidate for Implantation of the two lead like the trial. They explained, I sort of half listened. I was still p*ssed.
Home took drugs and a nice nap. Restrictions from surgical...Do what you can do comfortably. No submerging yet. About 1-2 more months. Reason made sense. So I am down with that.
You had had a full day of everything. Through it all you kept your sense of humor. So glad No Alien 👽. ,LOL. SO now maybe we can all look 👀 to a more peaceful weekend with less pain. Sounds like they gave you way too much morphine. Oh the crazy 😜 dreams and scary too. I can almost invasion them knocking you out again and them praying, " you wake her up, and others say Uh uh, you wake her up!!" Hoping for a happier you. I can't take morphine, it almost killed me. So no way Jose. LOL
I am glad we all found each other. Diverse in our pain, diverse in where we live and diverse in our craziness. YEP found me some great buddies to talk with.
NOW on a real lighter note. Wishing you and yours a HAPPY 😊 EASTER 🐣 🐰full of love and pain free. Well less pain.
Dee
DJ1976 allaroundanne
Posted
Hopefully it will print later. Have a good nite,,,,
allaroundanne DJ1976
Posted
ROFLMAO, I will presume it was a doozy if the moderators are looking at it so long. Just let me say, yesterday was WAY TOO LONG!. I thought the surgicenter had kidnapped me and was never going to release me. I am happy this morning with the decision to mover the generator over toward my love handles. The sciatic pain is miraculously gone, as in all of a sudden. I am so happy. I just need to get throught the usual post op pain and I will be truly back on my feet again instead of like I was before, having no low back pain but bedridden with this new sciatic pain. I hope my pain doc does report my complication so that other doc can avoid it. Don't put the generator anywhere near that big nerve and ask patients if they are intending at any time a big weight loss that would put the generator down near it. It is a serious compication, it happens so easily, and it is easy to avoid if you just ask. I am going to ask my doc on my post of appointment to please report it. If he doesnt;, I will.
Now I need to see what you wrote last night......
DJ1976 allaroundanne
Posted
Well morning follows night, and you my friend have possibly broken through the pain ceiling. I fear my post will be gone forever. It sort of was a doozie, but written without bad language. No names were added, but maybe I wasn't as positive to those who work for the implant Co. Oh well that's life in the fast week. Weil here's a quick synopsis. 7:30-text rep not coming to meet at Drs. Office.-text back, you were not coming someone else, did I miss something in translation? Reply their house burned down an a newbie did not show up. A Good Friday went downhill faster. ....go to appt. trying not to Lose it. Did Okay but let it rip. Much to my surprise very sympathetic and a bit of ire had shown. In middle of exam phone screams "text message, text message" I looked perplexed. Nurse says answer. Ok. Answer it reads,"are you still there?" I read it aloud, now she's perplexed. Text back, "YES". "I can be there in 15mins." Reply, "make it in 10,". Looks like it might be a Good Friday after all. She moves me to room right next to nurses office. Walls thin. I think they wanted to be sure No harm was done. He spent almost an hour. Imagine a whole hour just for me. Alas...his controller not working...text people fix it...my controller wouldn't link to his, again tech,people to rescue. See I think my controller was p*ssed, and couldn't remember that he was supposed to help me. It thought this was a random guy trying to harm Granny. Love my controller comes to my rescue. It agreed to let him tap in. Now he is getting antsy. I say, a little louder than normal, " I have no where else to be and neither do you." We re-programmed it to BURST 3 but a new area never used. Oh happy Day. Level 8 and can go to a 13. Go home and took muscle relaxer and Tylenol and took nap. OMG pain was 100+. The gods were against me. A side bar here. Tired yet. Go down to basement, yell to hubby and is not answering. DUH he's on 3rd floor. Up I go wake up sleeping giant, "Did you spill water when you we're wonderfully doing the laundry". See what I asked. He didn't. Tested water this am. Water. He thinks relief valve. So a new valve needed. Phewwww bit the bullet on that one.
my pain is slightly diminished. Is it really or am I wishing me to feel no pain. Will give it a week and go from there. Phew loooong day. You at least got some shut eye dreaming of goblins and other stuff instead of lollipops and rainbows. Are you better today? Go surgical clearance to do what I feel I can do. WHATEVER the heck that means. No submerging for another month or two. They are very careful. As my little friend Porky would say, "That's All Folks!!!" Fat chance on that staying. Be well my southern friend...
D
DJ1976 allaroundanne
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allaroundanne DJ1976
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DJ1976 allaroundanne
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DJ1976
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HAPPY EASTER 🐰🐣🐇🐰everyone. May you all have a pain free or a less pain day.
Dee
DJ1976 allaroundanne
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Dee
dianneg DJ1976
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Hi Dee and Lynn, I have a lot of reading to catch up with. I had my stimulator turned on last week but I haven't had any relief yet. I am still in a lot of pain from the two surgical sites so all of my sensors seem to go to those areas. I am just under 2 weeks since the surgery and I am still in a lot of pain, most of the pain is between my shoulder blades where they had to cut or trim the bones. Last week I accidentally bumped into my battery surgical site, oh my goodness, talk about pain. The incision was screaming in pain for several days but had calmed down to just regular pain now.
I have an appointment with my Neurosurgeon later this morning, I am hoping that I will get permission to drive and more importantly SHOWER. My hair needs washed and so does my whole body, these "sponge" baths just do not cut it.
I haven't read all of your posts here but I will later today if I am up to it. I did notice that one of you had talked about the pain pump. I did a trial of a pain pump several years ago with a different pain Dr. It was put in on a Friday, I am highly allergic to morphine and guess what they put in the pump......yes you got it, morphine. Within a short period of time I broke out in a rash, started scratching and began projectile vomiting. I called the pain Dr's answering service and told them what the problem was. They refused to get ahold of said Dr., I probably should have gone to the emergency room to have it removed but I ruffed it out until Monday. I went in and told the dr what had happened and he said that we never told him that I was allergic to morphine. I had him look in my chart and we had given him a sheet of paper with all of my medical procedures and medications that I am on. On the first page in 3 inch lettering it says ALLERGIC TO MORPHINE. He removed the pump and nothing else was said. He had been pushing me to get the Nevro HF10 but I wasn't sure if that was the one that I wanted.
I better start getting ready for my Neurosurgeon appointment. I hope that you all are doing well, please let me know what is going on.
Dianne
DJ1976 dianneg
Posted
Hi Dianne. Glad they turned on your stim. It will take at least 1 mo. and 2 more changes to the program. I just had my second re programming since March 2. The pain, like yours, was unbearable. P.S. watch how you twist and bend, as the battery will hurt like heck. My Dr. said that the scar tissue isn't thick enough to totally encapsulate the battery. You are still 2 weeks behind me. You probably will get the green light to shower, but not tub yet. But maybe you are luckier than me. Someone else mentioned the pump. But as I said earlier next to snakes I hate needles. The pump would need refilling I think Lynn said once a month. No way for me.
As as you said, I too am allergic to Morphine. So that would be a no go on my end.
I hope you have a productive meeting. Will try and get back on later to see how you made out.
Dee
allaroundanne DJ1976
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DJ1976 allaroundanne
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dianneg DJ1976
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Hi Lynn and Dee, I know that it is late here, 11:20 p.m. but I thought that I would let you know about my appointment with my Neurosurgeon today. On a good note, I have approval to both drive and more importantly SHOWER.
He removed any remnants of bandages and we were able to see what both surgical sites looked like. I kept telling my husband that I had a lot of swelling and a great deal of pain. The Neurosurgeon agreed with me about the swelling and also redness so instead of releasing me today I will be going back in a month and had X-rays taken prior to the appointment.
I am still in a whole lotta pain but not as bad as it was last week, so I guess that I am progressing. I still don't know if the stimulator is working because my pain sensors are still going to the incision sites. I have been trying to cut back on my pain meds, my Oxi is always close on hand.
Dee I want to know what you said that got you under the microscope not once but TWICE. I have only been in forum jail once and got out a couple days later. It looks like you must have been really naughty to be in there this long. I'm looking forward to finding out just what it was that you said. LOL
How is your Pain Dee, has is lessen any at all? What about you Lynn, is your battery has it finally found it's home or will it need to rest somewhere else? I just hate all of the packing up that needs to be done when we move our implements.
I look forward to hearing good news from both of you or at least how you have told your surgeons off. I will talk to you soon and I will let you know if I have any reduction in pain.
Dianne
DJ1976 dianneg
Posted
I think I am out of the corner. See what happens when Seniors lose their cool. I think they posted, but by being sidelined, I can't remember. That too. The brain falls off the rails. LOL. Phewwww glad you can shower 🚿. haha. Hubby must be happy.
I found the battery incision site takes the longest to heal. Mine right now is in good shape. It's about time. My last post told you about the Good Friday day I had. I am FINALLY glad to report that I maybe any about a 10% reduction in the right butt going down leg. So I think it is fair to say that we maybe on the right track in the last re programming. I told the rep, I would text him in 5-7 days with a yeah or nah. I worked hard yesterday's lots of up and down stairs and bending. It hurt like heck. But once I rested the pain subsided. That is a first. I am so happy about that. Now maybe I can do more and rest when I need to.
Baby steps I guess is the way to go. Still can't run a marathon not that I ever could. haha. I think 💭I will leave the vacuuming to hubby as that movement aggravates the hip. I don't go back to see the surgical PA until may. I see pain mgmt. next week. First visit since the implant 3/2.. She's my go to person for the pain not the surgeon.
I guess since you are the Junior, you will be turning the corner in about 2 wks. That would be great 👍 if you, Lynn and I can finally be happy 😊 and as pain free as we can be and be able to live within the parameters of the stim. So you take care and do one day at a time. Advice.....PA said to me at my last visit, "do what you feel you can do the rest will fall into place." Seems like good advice.
Wishing you a less pain day. Go out and enjoy the sunshine, I know you must have some. I plan on it but temp right now 46. I think I shall wait a while. LOL
Dee