Hello!!! This will probably be a lengthy rant. I've had a fusion at L5/S1, I have 3 rods in both SI joints, I had a bone spur and bulding disc shaved off at L4/L5. And 2 total knee replacements. I had the spinal cord stimulator put in August 2. I went through my 7 day trial with the stimulator and it worked wonderful. After my permanent stimulator I am in some of the worse pain I've ever had with any surgery! And I'm still very sore and tender in the middle of my back where the leads are, where the battery pack is feels ok. First week out of surgery I go back to the Dr cause it's too strong for my legs so they make some adjustments, since then it's cutting off during the night and I'm waking up hurting like crazy. I live in Mississippi but I rode with my husband to Michigan (about 12 hour drive)... about 4 hours into the trip my back is killing me and hot to the touch where the leads are. I stick my hand back there and there's a knot about the size of a goose egg... I'm freaking out by now and call the dr and he wants to treat me with antibiotics for infection ( it's clearly not infected)... we stop for gas and when I get out and walk around the knot went away.... within minutes of getting back in the knot is back, I called the dr back and he wants a picture but once he gets the picture he can't see anything (imagine that!) So I do this test for the rest of the drive... knot while I'm in the car, knot goes away when I'm out of the car.... by now the wheels in my head is turning.... I think maybe the long drive or the way I'm sitting in the car has caused the knot. I finally get to the hotel and I set every way possible and no knot! Watch TV no knot! Lay down no knot! Wake up this morning no knot!! Now here's the true test, getting back in the car this morning to finish the drive and I have a knot before we get out of the parking lot.... I call the dr and suggest maybe the navagation thing and he said it's impossible, there's no way.... I tell them it's definitely something in the car but they probably think I'm crazy by now. I get out and the knot goes away.... hold and behold I get back in and guess what appears, the knot!!! I gave my husband a tube of lipstick to outline the knot and we make more pictures to send to the Dr (now they can see the knot but I still need to come into the office), that's fine but I'm 12 hours away..... I ask again if it could be the navagation and get told NO, I send the picture to the sales rep for Boston scientific and he said navagation will not interfere with it, there's no way it can.... so my husband gets me to ask them about the tracking device that's installed on rental cars and all they say is NO and all of this is so weird (no crap, it's something in that rental car).... my own personal car and truck does not effect the stimulator at all just the rental car.... we be going back to Mississippi on Thursday but we will be in a different vehicle that does not have navagation or tracking device and I can not wait to see what happens....
Very strange indeed. But is the SCS working normally?? Good relief from pain??
I'm on the road to getting one.
Does the car you are in have electric and heated/Cool air seats??
Yes it helps with the pain as long as I have it on. The rental car is just the basic plain car, no heated or cooled seats,no electrics eats either just the hertz navagation and the tracking thing that's on it. But my personal car is totally loaded and I have no issues with the stimulator in my personal car
Must be a rogue signal coming from somewhere. DAB, GPS or possibly something not insulated properly.
Glad the SCS is working. I'm going for a lignocaine infusion next week. Step before the SCS.
I never done an infusion but I had seems like hundreds of injections that didn't work.
I've had a good few that haven't worked into my lumbar spine but this will be my first infusion.
Breezy1974,
Wow now that's is so weird, as I had the Nevro which has made my pain ten times worse
Won't go there. But I hope you find out what's going on, pls keep us updated on the ride home it should be interesting if it was something in the car.
Hope you feel better on the ride home and no knots!!
Cynthia (cindy) Connecticut
We are headed home and in a different vehicle and yes I have a freaking knot!!! I am so frustrated now! My husband said something electrical must be causing it, I'll be glad to get back to my own car, my car hasn't caused knots. As soon as I get out of the vehicle, the knot goes away but comes back within minutes of getting back in it.
I'm worried cause I have swelling in, on, around my spine and that can't be good! I would think any amount of swelling would be bad! I have a Dr appointment tomorrow about the swelling but I'm telling them to take it out!!
Breezy,
I agree I've been asking them to take my Nevro out since they put it in back in December of last year. Nothing but disappointment. Good luck with everything and keep us informed what they find out or just tell you to please you, as any dr does lol
But definitely keep us posted.
Good luck on the ride home just keep taking breaks.
Good luck
Cynthia (cindy)
PS have you tried ice maybe? Just a suggestion...I guess it can't hurt
No haven't tried ice but I don't see what it could hurt.
I called Boston Scientific (maker of my stimulator) and was told nothing in a vehicle can cause swelling at my leads, it's unheard of...... my reply to him was "if I was closer to you I would come pick your *** up and you could come ride with me and experience it first hand"! His reply was the materials in the seat covering is pushing against the tissues in my back.... I told him yea whatever dude. I do not even have the stimulator on cause I'm scared to turn it on with the swelling.
Could it be deep muscle spasm by the way seat is ? I have had terrible spasms with inflamation knots. Sympathetic nerves system! 4 months adter trial still have muscle balled up. Thinking about trying chiropracter. How frustrating this is to have doctors with no answers and acting like we are crazy.. sure, we all are!!!!
I've talked to 3 different nurses and the surgeon and 3 people from Boston Scientific and everybody says there's no way it's impossible. Boston Scientific dude said "seat material" was pushing againt the tissues in my back...... I only swelled in a hertz rental car and a ryder truck, my car does not effect it at all... I did swell whike laying on my side last night in bed.... yes I think they think I'm crazy but I have videos of me in the ryder truck while it was swelled and a video of the swelling gone when I got out of the truck....
Oh wow all patt anserws." We never heard of that !" Must have meetings to tell all reps that this is your answer to all patient problems...so as you can tell I am fed up with all the crap. I want to know what has happened to my back as it was fine before scs implant.
I told all the Boston Scientific reps and the nurses that will be taking the stimulator out of my back but of course they want me to be patient and give it more time....I met with a rep on September 1 so "they can download the data" from the stimulator to see if it shows anything
Wow, taking a 12 hour ride after having the stimulator placed so soon, is in my opinion way too soon. They state not to sit or drive more than 45 minutes for a few months. By doing this your not allowing the body to heal like it needs to. Therefore given you just had it placed and wanting it out, is not giving the SCS a fair trial. I was in lots of pain for 2 weeks and unable to do the things I want or need to get done, but we have to be patient and realize things need adjustments, and the body needs to heal. I had mine placed 2 months ago and its driving me crazy with having to be so careful. I know I still have 4 months before I'm able to really get out and do stuff I enjoy, but we simply need to be careful. I think something certainly could be causing interference with the device, and i know thats frustrating, but give it a little time. Have you turned off the unit and got into the car? If so... Same problem? You are thinking the nav system? Did you have these problems at home in your car... If you didn't, do you have a nav system? I know there is so little information out there, and we all react differently. I really hope you can get this figured out because these devices can really help! Good luck
When I got my staples out, I asked what my restrictions were and the dr said do whatever you want. Yes it definitely helps with my pain but I do not like the swelling, just seems to me that any swelling on and around the spine would be bad. I have had the stimulator on and off in the hertz rental car and on and off in the ryder lease truck and both vechiles caused swelling, my husband thinks it was maybe the tracking device that's on lease and rental vechiles but we really don't know. Our own personal vechiles does not do anything and my car is a 2016 model. I meet the stimulator rep on the 1st and he's gonna download the data to see if it shows anything
WHAT!? All literature states major restrictions after getting the permanent placement. Especially the first 2 months... With a total of 6 months making sure the leads build up the needed scar tissue. I'm sorry to say this, but I'm shocked they didnt give you limitations! I even read in the manual about the driving and no bending, twisting, stretching, lifting, etc. This could definitely be a reason behind some of the experienced problems? I'm an extremist (thats the reason behind all my surgeries, Finally followed with my SCS - due to a really bad ATV accident) I went with the paddle leads, which required a lamenectomy, and i still have these crazy restrictions. But I'm hoping in 4 more months, I will be good to get on my snowmobile and tear up some snow in the mountains. But in the meantime, I'm parked as far as my activities. As an example... I'm 2 months post and told i can't even weed my flower beds because of the constant bending... So I seriously take it easy with the activity levels, as this can cause leads to move, with un-foreseen consequences. And I'm only saying this frim one SCS friend to another!☺
I was told no bending or twisting for 2 weeks only. I even asked the stimulator rep and he said there was no restrictions on his end either bit the first 2 weeks... it's just so frustrating