Subcutananeous Placement of Neurostimulator Receiver

My doctor has recommended that I have this surgery in an effort to control the Type II pain I've had in my jaw for 11 years. Has anyone had this? Apparently, it's a neurostimulator positioned through the back of my neck and into my spinal chord. There are serious risks of infection and paralysis, but the neurosurgeon says he has had some real success in helping TN patients who couldn't get relief from less invasive procedures. So far, my insurance company denied the proposal, and I'm awaiting their answer to my surgeon's appeal. Please let me know if you know anything about this. Thanks!

I spoke with someone who had one and gets 80% improvement. I understand it is difficult to get insurance approval. When this woman did her research, Medronics was the stimulator said to be getting the best results and that is what she has. If you do the procedure, make sure your surgeon has A LOT of experience!!! Best of luck to you. Good wishes for much pain relief!

Thanks, Nomad. Wow. 80% sounds fantastic. But I've learned to not get my hopes up too much. I thoroughly trust my referring doctor at The Cleveland Clinic, and the surgeon seems competent and confident. When they put the wires in permanently, they are also going to remove a peripheral nerve stimulator implanted six years ago. Mine was the first jaw they had ever tried, but the lead fell a frustrating couple of millimeters short of covering the spot of the nerve damage.

Hi Henry - my pain management doc wants me to do this as well - I already have a Medtronic neurostimulator implanted in my right hip for a nerve root tear at the base of my spine which was dreadfully painful as well - it works fantastic for controlling THAT pain in my right hip, leg & foot. However, I don't want to have another one put in for my Type II TN - I'm just not fully convinced that's the direction I want to go for treatment. My insurance DID pay for my stimulator that was already put in but I'm not very confident they would want to pay for a 2nd one. If you do go this route, I would highly suggest Medtronic - they have been wonderful to work with since my implant back in 2007! Wishing you the best! :)

Hi Lori(Lefty), they tried to talk me into having a neurostimulator implanted in my face basically, at Emory, (I used to live in Lansing/Leavenworth area but now in GA), I had TMJ prosthesis implanted and the surgeon left me with damaged trigeminal nerve and ganglions and some fake bone pushes against the cerebellary artery and that pushes against the trigeminal nerve causing 24/7 pain in my teeth, mouth, gums, lips, chin, etc. It caused me left ear hearing loss, infection, and ultimately affected my immune system so badly with issues that I developed a low grade form of myasthenia gravis that mainly affects my vision. You mentioned that you went to Johns Hopkins and got some answers as to what happened to you. I would like to do the same. My doc won't tell me much except that "sometimes things go wrong during surgery..." but I know that my original surgery was supposed to take 3-4 hours turned into a 12.5 hour disaster. Can you assist me in telling me how you went about getting help at Johns Hopkins, who to contact, etc.? My email is ■■■■■■■■■■■■■■■■■■■■■■■ or 706-■■■■■■■■. I sent you a Friend Request. Thanks, Tinkerbell aka Tracy Tata. Many thanks for your assistance.

Lori (Lefty) said:

Hi Henry - my pain management doc wants me to do this as well - I already have a Medtronic neurostimulator implanted in my right hip for a nerve root tear at the base of my spine which was dreadfully painful as well - it works fantastic for controlling THAT pain in my right hip, leg & foot. However, I don't want to have another one put in for my Type II TN - I'm just not fully convinced that's the direction I want to go for treatment. My insurance DID pay for my stimulator that was already put in but I'm not very confident they would want to pay for a 2nd one. If you do go this route, I would highly suggest Medtronic - they have been wonderful to work with since my implant back in 2007! Wishing you the best! :)

I had a doc at Emory recommend that I be in some clinical trial they are doing. I had TMJ prosthesis surgery 4 years ago that turned into a fiasco...now I have Type 2 TG pain and my jaw still isnt fixed right! The neurosurgeon at Emory wanted t implant a neurostimulator basically into my face. The pacemaker type device battery would sit like where my bra strap is and the leads run up through my neck and into my face near the TG nerve. His name is Nicholas Boulis, MD. I opted not to do it. He has had success but I would be his first bilateral TN pain patient.

It is amazing how many of us who are clearly suffering from TN II pain also have other neurological disorders. I too have had a nerve stim. implanted in my leg for damage to the heel of my foot. It is also a Medtronic, and it works so well, I never even think about it. In fact, I've described it as "miraculous" to some people. One day, I wasn't sure if I would ever be able to walk again, and the next -- pain free! It is exciting to see what they're able to accomplish and I'm hopeful that something someday may be able to check these bouts of horrific pain!

Henry - I couldn't agree MORE!!! I was the same way with my nerve root tear - could barely walk (& only did when absolutely had to!) & once they turned on my stimulator, the pain in my hip joint, thigh, knee & down to my toes in my right leg was GONE!!! :) That was in 2007 & I haven't had a single problem with it since.

Tinkerbell - you might want to think about at least doing the "trial" lead - it's not the actual implant but they do it to see if it would actually help you with the pain you suffer from...I wasn't crazy about doing it at first either but finally did the trial & am so thankful I did! Your TN II seems to stem from a different problem than mine - mine was documented & seen on reports & scans from my actual MVD surgery - that was how the neuros. at Johns Hopkins were able to see what happened to my trigeminal, optic & other nerves to cause the problems I have deal with now, including TN Type II. It was unique in the sense that they are neuros. looking at my "nerve surgery" & could decipher from the surgery what went wrong. I don't think this is usally the case so I couldn't recommend you going there for them to try to tell you what happened to you...I wish I could, AND I wish I would just make the pain go away...maybe a different type of specialist would be able to help you...the neuros I consulted with recommended some treatment options that I will be going back to at least try, but those procedures can be done many places...I just won't let the dr. here even touch me again! Prayers for all...♥