Sorry it takes me so long to reply, my life is crazy right now. The supplier is Medtronic and I have 16 leads located in my brain. My cords too run under my collar done to a battery pack in my chest. I had to have the small battery put in because I have lost so much weight. (wish the weight would have come off in my 20's haha) Thank you so much for praying for me I truly know God has it under control it is just some times I feel very overwhelmed. 'I know I am sing to the choir' when I say things like that on this site but it is nice to have somewhere to go and release for just a second, Merry Christmas and may God bless you this wonderful upcoming year.
Merry Christmas Ginger! Hope it eases up a bit for. Best wishes
Ginger-did you have motor cortex stimulator installed or the Peripheral nerve stimulator installed? I am going to have the motor cortex stimulator installed as part of a clinical trial at the Mayo Clinic in late April and am trying to find others who have had these surgeries and their results as well as what to expect as far as recovery time and life adjustments. I was told by Mayo that I would have to go back two weeks after release and then a month after that but their was no mention of battery charging. Trying to plan a head but it is a scary unknown. I personally ended up with Anesthesia Dolorosa after a radio frequency rhysotomy to try to stop an extreme TN attack that lasted over a week leaving me unable to eat or talk. That was successful but at a cost of this complete facial dumbness and "phantom limb pain" on the entire left side of my face. Any information would be great!!
I had the motor cortex stimulator installed. I have to charge the battery every night. I would be happy to talk to you. I am not good at typing and I would rather talk on the phone. If you are okay with this give me your number I will be happy to call you and tell you all the things I have experienced. You can email me your number at ■■■■■■■■■■■■■■■■■■■■■.
I have been accepted into a motor cortex stimulator trial with the Mayo Clinic-and my insurance has agreed to pay for it!! Please keep me posted on your experience-I would love to compare notes.
Beth said:
I just saw this, Ginger. I have applied to be part of a clinical trial at Johns Hopkins for motor cortex stimulation for intractable TN. I have an appointment to meet with the neurosurgeon on September 21, to see if they'll include me in the trial. As my TN/GN is getting progressively more debilitating, I'm incredibly excited about the prospect of having the surgery.
thanks-hope to hear from you soon!! Best wishes
Ginger said:
I had the motor cortex stimulator installed. I have to charge the battery every night. I would be happy to talk to you. I am not good at typing and I would rather talk on the phone. If you are okay with this give me your number I will be happy to call you and tell you all the things I have experienced. You can email me your number at gwimberly84@gmail.com.
Any updates from anyone? I saw a few were doing trials
My operation date is set for May 16 at Mayo in Rochester-Ginger and I talked and she had a slightly different surgery than I am going to have. If you have any questions at all-let me know. An interesting thing Ginger mentioned and the people at mayo confirmed is that once you have the stimulator implanted you can not have any other MRIs for the rest of your life. I will get a battery that needs to be replaced annually but will not require recharging. Cutting edge stuff!!
I would love to have that kind of battery. I also forgot to tell you that depending on which side they put the stimulator in on (I forgot what side you told me), you will not be able to fire a gun other than a hand gun. You can’t put anything against your shoulder where the battery is located.
Please keep me informed on how you are doing. I have said a prayer for you and your family. I hope all goes well.
I got my marching orders from Mayo-be there May 12th for surgery May 16th- a little later than expected but they are updating operating rooms and I told the girl I would rather wait a month than have my surgery done in the hallway!! I guess the battery has to be replaced once a year so not completely off the hook when I get out but I am praying for a better situation than now. Thanks so much for talking to me-you are in my payers.
I just saw this post. My doctor wants to put me in a trial for a device called the BURSTOR STIMULATOR that. is being done by St Jude. I have not heard of this device before but it sounds like the device in this discussion. I know it has been a long time since your last post but can you tell me if you still are having pain?
I have had TN for 7 years and I don’t know what else to try. I had gamma knife in Dec but did not have any relief in pain level. If anyone has had this procedure done I would appreciate any information that you can give me.
Thanks
I just saw Dr. Burchiel at OHSU in Portland because I had hoped for a peripheral nerve stimulator. He told me that he does not do them for TN, only other kinds of facial pain. I was crushed because after reading so many others’ success stories, I thought PNS was the light at the end of the tunnel for me. I do have both TN1 and TN2, and have had 2 previous MVD’s and 1 Gamma knife procedure…so maybe that had something to do with it. Still in intractable pain and meds not working anymore. I feel like I have no life…just pain 
I was just offered a radiofrequncy rhizotomy but was warned that it might not help my eye pain and there would be numbness. He didn’t SAy where or how much would be numb. I would appreciate knowing more about how they did your procedure (through the moth?) and where are you numb. Please email me at ■■■■■■■■■■■■■■■■■■■■■■■■■■ if you like. Thank you.
Hamboy: was the motor cortex stimulator helpful to you?
I have gone back to Mayo once in early January to have a different program put in since I increased the frequency on my first program as far as I was comfortable. My implanted battery is supposed to last about a year and so far it is still OK. I probably am ready to try another program now but I want to wait until I need the battery replacement to reduce the number of trips up there. Both of my neurologists here and in Rochester have been very helpful. I am still on Gabapentin (1800mg/day) and Baclofen (50 mg/day) and they added Keppra for possible seizures (750 mg/day). I still have facial pain and at times zaps and that dreaded drilling feeling in my teeth. I still have to cut my food up small and drink through a straw but I have adjusted. So to summarize, it has not fixed things but I hate to think where I would be at without it.
So sorry you didn’t get the relief you need and deserve. Have you tried amytriptyline or noritriptyline? I take amytriptyline and get some sleep and relief at night with it.
Fall of 2017 I had a stimulator implanted into the upper nerve bundles of my cervical spine. The trial was great and I received a 50% reduction in pain although it did not prevent a Trigeminal storm from multiple triggers. (A normal day for me is over a 1000 hits a day in all 3 zones, left side. 400 being higher than a pain level 5. Not including pain to the back of my head. That’s just an extra blessing.
) The permanent implant turned into a nightmare. My tinnitus in my left ear turned into a constant along with my blurry vision. My fall count doubled. I was experiencing hot flashes most of the day. When I turned off the unit, the symptoms reduced, although the tinnitus is still constant now. Anyone else have a unit placed recently?