I had my stim implanted yestery. I only have one lead over the nerve that is the center of all my pain (I call it the mother lode). It's on my upper cheek near the fold next to my nose. My stimulator was implanted in my slide toward my back right above my waist. I was so sore all over yesterday that I stayed on pain meds and didn't try out the stimulator until today. I can feel very light stimulation but it's a little below where my pain is and I feel NO difference in my pain level. I'm so bummed. When I did my test, it wasn't real hot yet outside so the a/c wasn't blasting like it is now (especially at work all day), so my pain was not all flared up like it is now. Spring, early summer and fall are always my calm months, so I really was not a good time to test. Plus, my doctor had to really jab the lead across my cheek so it was so sore all week, I couldn't really tell if it was the soreness or the nerve that was hurting since I wasn't having the stabbling pain that I've been having now that it's hot and the a/c has been cranking all day at work.
Another couple of things are that my eyelid is partially closed and twitching (although it's not as bad as it was when I first turned it on) and I cannot hear out of my ear on the surgery side. There is a cut with stitches on the front of my ear (nothing behind it) so I think they ran the wire there. I don't see any packing in my ear, so I hope it's just the swelling. I do have a follow up appointment on Monday so I can ask my doctor about it. The medtronic rep will be there so I can see if I just need an adjustment. I'm just afraid if she turns it up, the eye twitching will be worse.
Another couple of disappointments is the Medtronic unit is not like the one I tested. I cannot raise or lower the amount of stimulation like I could on the test unit. That really sucks. Also, I have this big round antenna unit that is attached to the remote. It is heavier than the remote and I am note able to detach it. Does anyone have the Medtronics model 33751? How far away can I be from the remote and antenna? My job involves attending a lot of meeting on different floors in my building. Do I have to lug these things with me?
Can anyone share their initial experience with their stim? Did it work immediately? I hate to think I went though all of this for nothing :(
Mary, I have the Medtronic 37743. The battery is in my chest, right side, and three leads are across my forehead and the lower back of my head. They come up behind my right ear from the battery. I have a unit that can change the stimulation and the surface coverage, just by placing it on my battery in my chest. Then I have another unit that charges my battery. That I place on the battery once a week while watching TV, because it takes about three to four hours to recharge. Now this can be plugged in the wall or I can use it with just the batteries in the unit. So very portable. They are small so can be transported easily. I felt the stimulation immediately after the implant. But the Medtronic people have the capability to change the settings certain ways which I cannot do. Also you cannot tell at all I have the wires in my forehead, but it is lumpy behind my ear. They are all very close to the surface of my skin. I have had it since 2008. I have had an MVD a year ago. The stimmulator does take the edge off the pain some but not 100%. Hope this helps. Keep me posted or write if you want more info. Good luck to you. Pray it works out for you. LaDonna
While I did not have the Medtronics unit, I also had the issue with my eye spasming. Make sure that you speak about this with the rep - hopefully they can fine-tune the unit to get rid of that - I do know how annoying it can be. Also, as you heal, the feeling will change, so be sure to have it programmed soon to get the eye situation taken care of, then again after three months or so - and if you are having problems, don't worry about getting them to program it as often as you need. You may also need to change the program as time goes on.
Hope this helps,
I am not familiar with the unit you have, my generator is implanted under my right collarbone and the leads run under my skin, up my neck, behind my ear and feed into the electrodes that are implanted above and below my right eye. My device is adjustable and I have a small tool that is used. I find that when I turn to device up higher, it forces my eye close and causes twitching…it just calls for a readjustment of the settings. I have had the electrodes implanted at my eye since February 2012.
I wanted to skydive….but my medtronics rep. Andrew (I call him my Bionic Repairman) said that it was not a good idea as the lead wires might be jerked out and Dr. B would be upset.. LOL
I am so sorry this happened to you and is happening now. I am scheduled for my final implant on September 9th. The funny thing is my trial NEVER worked. It worked while I was on the table but as soon as I stood up it started stimming my fingers, my shoulder, my face (the wrong part of it), and my neck. The trial was a flop but since I had relief on the table they called it a success. I am scared to death to have my surgery now for fear it will not work. I did not have enough time with the trial and NO time to experiment with it to see if it worked. My neck still pops and makes noises from where they implanted it. (mine was in the spine, see picture up into my neck).
I am getting the MCS in my spine not the PNS but I will let you know how it goes. How are you doing now? Any improvement? They can reprogram your unit for you to stimulate you in various areas. Basically what you have ( where it is stimming now) can be changed in many situations without removal and another implant.
I hope they can get your settings right. I will let you know if I get anything to lug around too. I sure hope not. This is your final implant and not your trial, correct?
Mary, I hope things have calmed down with you and you have more pain relief by now. I am having my trial Sept. 4th and I don’t really know what to expect. Take care.
Mary, what insurance did you have and did they pay for it? Thanks! (My insurance has denied my request for one and has claimed that no other insurance company pays for them.) Thanks, TL
I had Medtronic s stimulator implanted in march. I've been sufferingbTN for 8 years and had MVD surgery 4 years ago. It helped a small degree but soon turned atypical. My surgeon said this was my only hope. The trial took an extra week to recover from surgery and then be able to turn on and try. It was about 50% improvement. So had two leeds put in. One in cheek and one coming under my ear with wires running over and behind ear and down neck connected to battery in my chest. They kept saying I was slow healer as pain was out of control. Pain is much worse than. Before!! So now they are planning to remove device next Friday! I'm so disappointed! All that pain and money and now another painful surgery!! I'm lying in bed with ice pack and crying myself to sleep as usual. I wish the rest of you best of luck. I told surgeon I Was prepared it may not help but NOT prepared it could make Worse! Surgeon said it is extremely rare! I am his third who had to have removed. The device itself stabs into my trigeme nerve!! Turning on only makes worse!
Newlife, I am so sorry this didn’t work for you. It has given me back my life-- I still have TN and it is getting worse BUT the #10 pain I had 24/7 is under control. I had to have a lead adjusted recently and had the Stim completely off and it was terrible! I hope and pray that you find something that helps soon.