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I like to hear from people who have a SCS . I am thinking about it and like to make sure I am doing right thing. how about the recovery and can you go to work right after or maybe in a few days after
1 like, 16 replies
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lisaj77 richard88201
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richard88201 lisaj77
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dpilot richard88201
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Here's the drill with the "Burst" system developed by St. Jude. With this system there is no buzzing (parathesia) sensation except when that mode is turned on, and its only turned on for when they map out the desired coverage. In other words it buzzes in order for you to tell them if the stimulation is on the areas of your pain. while they program it and if its not they can adjust it by programming via an external device. So the first thing is you get a trial to guage whether or not it helps. They run the leads up the spinal column then tape the battery/generator to your back then bandage all that up. Gotta make damn sure the area where the leads breach your skin is well bandaged and not wet or soiled because any infection there has a highway straight up the leads to your spinal column. Once they have it installed and taped and bandaged, they go through the mapping phase with the buzzing sensation just to make sure that when they switch it to the "Burst" stimulation that it is covering the right areas ie right lower back, right hip and groin and both sciatic nerves in my case. Once they get the areas covered, they change modes and turn the buzzing (parathesia) off and turn the "Burst" on, and then you feel nothing from it. Then they turn you loose to go home. They don't want you doing any lifting or excessive reaching or twisting since this could cause the leads or in my case just one lead, to move out of position since they are not anchored during the trial but just slid in place. In my opinion unless you don't do anything the leads will eventually move over the 7 day trial period. So they want limitted movement for the first several days of the trial and want you to document as much as you can. I printed up sketches of the human body and diagramed the pain level and location every 4 hours. I also made extensive notes and documented the time of when I medicated. They don't want you to change up your meds because they want to make even comparisons without changing or introducing new variables. Then after a few days of low activity and after you get a good sense of the affects of the stimulation they want you to engage in the activities that you want to do or the activities that the pain prevented you from doing. This may cause the leads to move and become less effective, but since you spend the first 4-5 days limitting your activity you'll still have a good idea of their initial effectiveness when they were not out of the correct position. I spent my last two days out on my boat fishing which entailed hundreds and hundreds of casts that with a normal back will cause some fatigue and soreness. Also there was a lot of lifting of medium weight and twisting to clean the boat and standing while I cleaned and butcherd fish. I did a lot of chores as well. At the end of the last day of trial they x-ray your back to see how much the leads moved off target so they can guage any change in their effectiveness before they remove them. In my case the leads moved some by the end of the trial which I could sense because a tad bit of the effectiveness was reduced, but overall it was great. I felt that I could have gone without my meds completely. It reduce my normal 3-5 pain level to zero at times when I was inactive. My worst pain is when I get out of bed in the morning and it takes 3-5mg tabs of Oxycodone to get the pain to a 3 level by 11:00. Thats's my prescribed amount per day. Then by day's end pain builds back again but more in my legs till after laying down which brings it to 8 every morning. With the stimulator, my morning pain dropped to about a 7 when I got up but reduced to 2-3 within 5 minutes without meds most mornings. Since I didn't feel the need for my meds but they wanted me to continue with them through the trail, I at least stretched them out through the whole day and into late evening. That was a huge change for me. I am getting the implant this Thursday on the 6th. The issues that comes now are which battery/generator to have implanted and where to locate it. That entails another discussion. It's not that big of a surgery, but the recovery is extreemly important that it's handled correctly. I will have to wear a brace for a minimum of 6 weeks to prevent me from extended movements of reaching, bending or twisting that might move the leads. If the leads move after implanted and anchored, then the entire procedure is wasted. In the final implant, the leads are anchored and the 6-8 weeks of recovery allows for scar tissue to grow over the leads to further anchor them in place. That's why the recovery is critical. If you get too active too soon, it could ruin everything by moving the leads.
I hope this helps you understand how it works, and helps your decesion making going forward.
richard88201 dpilot
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dpilot richard88201
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Yea, the Doc said that after the wound heals in about 2 weeks, then I can drive, travel, do light duty chores etc. Just can't do anything that would break loose any scar tissue that is trying to engulf the leads and generator/battery or pull on the leads. The brace should prevent you from doing too much. Hope that helps.
sarah0808 richard88201
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Hi Richard! I had a Boston Scientific SCS implanted on May 25th. Everything went perfect until about 10 days post op. I was following all restrictions by the book, no bending, twisting, picking stuff up, etc. I was sitting down and suddenly felt a pull on my right side and there was intense pain. I should have called the doctor, but I had an appt three days later to get my staples out, so I waited it out. Well, sure enough, the right lead had been pulled up and the left had gone down slightly. Long story short, I am currently 6 days post op on having an SCS revision. So far, so good. I will say that you will probably want to consider being able to take some time off work. I had my revision done just over a month after my original surgery, and I was just getting to the point where I could start doing light house work, i.e. Small loads of laundry, emptying the dishwasher, that sort of thing. I would suggest at least a month off work, but I don't know what your pain tolerance is or how demanding your job is. Recovering from surgery, especially this type of surgery, is a full time job in and of itself. The smallest tasks will exhaust you. Just some things to consider in making your decision. I would also like to add that if it works for you, absolutely do it. I have been on pain meds for the better part of 17 years and this device is going to change my life. And hopefully prolong it by not having to take so much medication.
Feel free to ask me anything about it/my experience. Knowledge is power.
Good luck to you!
richard88201 sarah0808
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dpilot richard88201
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Just got back from the surgery center about 45 minutes ago after having the implant. Let me say a couple things regarding your situation that I can relate to. First, to a doctor, a successful fusion surgery is accomplished when the two vertabrea eventually fuse together. To the patient however, a sucessful fusion is when the procedure results in reduction or elimination of pain. Most of these procedures sucessfully get the bones to fuse, but prescious few result in the reduction or elimination of pain. In my case fusion didn't eliminate pain, it simply modified the pain profile from an occasional level 10 completely debilitating pain of short duration with more frequent level 2-3 aching pain, into a constant 24/7 level 3-5 pain along with daily level 8 pain every morning when getting out of bed. So for me it was a failed fusion despite the vertabrea fusing perfectly and completely.
Now for the Neuro-stimulator. During the trial the leads or in my case just one lead is slid up the spinal cannal but it's not anchored. If you have it implanted like I just did this morning, two leads are slid up your spinal cannal and anchored. They numb the area alot which is a painful ordeal to start, then sliding the leads in place is worse for some and painless for others. It was bad for me. I watched the monitor and saw everything as it happened. Remember now, the leads are like weed-eater mono filament line but slick and clear;their about twice the diameter of a large paper clip. They are round, smooth, and look like clear plastic, and have no protrusions for anything to attach to. After the doctor feeds them up your spinal cannal, the power is turned on by the technician in the mode that feels like buzzing or mild tingling so they can ask you to verify what parts of your body is being covered by the stimulation. This is all done while you are awake and mildly sedated. For me it was painful and I'm no woosey. They need you to be alert in order to respond to their querries about the coverage. Then once they get the set for the coverage that is wanted, they are anchored in place. Next they thankfully add anithesia to the IV and put you to sleep while the doctor implants the generator/battery and plugs the leads in to it. Then they wake you up, give you instructions about how to care for the wounds and to limit your movements so that the scar tissue can grow and further anchor the leads. After the instructions, they have you put the brace on and turn you loose to go home to recover. The next week will probably really suck since I can't have my morning and nightime shower. I've been given no added meds to help with the pain or sleep. The stimulator will not be powered up for two weeks since it is inaffective immediately after surgery due to swelling of the surgical wounds. After two weeks when its turned on and tuned up, I should be receiving the desired benefits. I hope this information is helpful, and I'll fill you in more as I progress if you ask. Good luck.
richard88201 dpilot
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Wow you had it today how is your pain level are taking something for the pain two weeks without using the scs. Not sure if you work or not but if you do work how long until you return to work so your fusion surgery worked as far as the bone fused so what is causing the pain scar tissue or, it seems it is hard for them to figure out the cause I hope your recovery goes good for you and scs reduces your pain I have my one year appointment on Monday so he tell me what's the plan to help with the pain I am not able to take pain pills while I work plus I have a addictive persanalty so I take like 4 advil which does not help much
dpilot richard88201
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I got numbed up where the battery/generator was implanted as well as the incision where they anchored the leads. All that was very unpleasant. I suspected and was told when the numbness wears off in a couple days, it will become kind of painful few more days, then the wound pain should taper off and be no more than an irritation. I have been taking 5 mg tabs of oxycodone 3 times a day usually done by 1:00 PM since the worst back pain is in the AM. He gave me no additional meds, so I will have to stretch them out through the whole day and maybe take some unisom to keep me asleep a few nights. Once the wound heals and the stimulator is turned on I have no doubt that I will not need any meds. I'm 69 and have no other issues, so a big deal for me is to get off the pain meds so I can fly again. I was an airline pilot and had to retire a couple years early due to the pain causing me to not sleep when I was out on trips so I grounded myself and once it got bad enough that I had to take pain meds, I couldn't get back to flying till I knew I was done with them. I'm not going to fly passengers commercially anymore since I'm retired and the age limit for airline pilots is 65, but I will be flying again as soon as I get the pain level down with out meds which is what I was able to do during the stimulator trial.
My continued pain since fusion is cause from my joints that are adjacent to my fused joints which deteriorate after a fusion because they take up more load. My current choice was either another fusion which could lead to more load on the next adjacent joints, or implant the stimulator. I chose the stimulator because the trial worked and if the joints eventually deteriorate enough, I can always get fusion later. Once fused however, it's forever and this last one ruined my sleep because I get comfortable only when I find the precise position I was fused in otherwise I'm bending my back in my sleep where it won't bend causing enormous morning pain.
dpilot
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By the way, back about 30 years ago, a flight surgeon that I had to see for annual physicals when I was a young first officer told me I to take 12 advil a day for my back pain. He said I could take them in anycombination like 12 at once or one ever 2 hours, or three every four hours etc... well I didn't take that many, but I did take alot and eventually developed a stomach ulcer. Fortunately I got rid of it, but I take advil very sparingly and no more than maybe 3 per week. When I take an advil, I make sure to take a nexium sometime the same day to offset the stomach damaging side affects of the advil. Just so you know.
dpilot richard88201
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dpilot
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I just remembered this too,; After my fusion the Doc said it would take a year to 18 months to fully heal. I heal fast from the surger wound and shed the back bracein 45 days, then when things didn't improve after 18 months, the doctor said maybe as much as 2 years. Then at the 2 year point ( which ironically is as long as doctors are required to keep files on patients) he said there was no more he could do and wouldn't see me again. I eventually was seen at the Mayo Clinic, and yhave a great pain management doctor who arragned that for me. The pain management doc is the one who just performed the NS implant today.
Wow, a lot of info. Hope it helps
richard88201 dpilot
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Yes wow that is alot of infromation thank for that Hows the pain level doing i am sure you are counting days until you can turn on the scs. I been waiting 6m for my 1 year post surgery appointment on Monday got a call today that the doc will not be in the office that so have to cancel so now I have to until 7/22 😈
dpilot richard88201
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Yea well I found that so many Doctors, feel like your time isn't as important as their time. Fortunately for me my pain mgt doc and his wife , the nurse have been great to me. I hope it turns out that way for you. Today the pain from the surgical wound overwhelmed the nerve pain. The numbing affect drifted away through the night and this AM it woke me very early, and it felt like I was being eaten by a large animal that started on my right love handle and mid back. I held off on taking any more of my meds yesterday after surgery and counted just on my normal dosage and the numbing, and the affect of the risidual bit of anithesia that was used at the end. It really sucked. Now by evening a day later it's significantly better better than yesterday, but I did take 1/2 a tab extra of my pain med that I'll have to do without later. That should work out OK since I probably won't need it later since the NS will be turned on in 13 more days.If you have this done remember that there is also a battery/generator residing in you that early on hurts when pressure is on that part of your body. Now, I just hope I can sleep through the pain in 1.5 hour segments like I did last night. The pain is less this evening, but at the same time I'm not drowsy from the anithesia like yesterday. Like you said, I'm looking forward to having the NS turned on because by that time the wound pain will be gone and the back pain will be flashing like a rail road crossing signal. I'll keep you posted. I'm guessing that if you don't do a lot of changing of body position in your job, that you would probably be able to get back to work in maybe a couple of days plus a weekend after NS implant surgery. Check in again tomorrow and I'll give you more information on what its like. I'm surprised my Doc hasen't called to check on me but he probably knows I hated him last night.