But does anyone get light headed
I HAD THE MVD 16 YEARS AGO AND THE SURGEON CUT AND REMOVED 60% OF THE NERVE SO OF COURSE THE LEFT SIDE OF MY FACE AND HEAD IS NUMB. DO YOU THINK THE STIMULATOR WOULD WORK ON ME EVEN THOUGH MOST OF THE NERVE IS GONE? I AM IN DIFFERENT LEVELS OF PAIN ALL THE TIME AND HAVE TRIED ALL THE MEDS. AND OPIADS THERE ARE TO NO AVAIL. JUST WANT YOUR OPINION. I WILL BE TALKING AGAIN TO MY DOCTOR ON THE PNS. THANKS AND GOD BLESS
God bless you John.You should certainly try it.Merry Christmas.
Christine and John, first Christine where did you get yours and who makes your stimulator? I found a site www.sjm.com, someone recommended going to that site to find a doctor that does PNS. You go to Patients, Neurostimulation, and then enter your zip to find a doctor within a 100 mile radius. I found a long list of neurosurgeons and pain management doctors, have not called any yet but I do know most do spinal cord stimulation so it could be a lengthy search to find a doctor. I believe PNS is a try for those that are not offered surgery, do not want surgery and for those that have had failed MVD. That is for you John, so sorry you have been suffering for so long. Sharon
Medtronics makes them and that who did mine
Dear Christine who is the doctor who did your PNS? I have TN for 15 years, 2 MVD's and other procedure but no relief. Actually the doctor who did the first MVD damaged the nerve and after that nothing can help and I believe that only PNS might help. I am trying to find doctors close to NY who also take insurance and I will greatly appreciate any info.
The doctor that did my PNS is Dr. Jeffrey Brown on Long Island. He does take insurance, and works closely with the rep from St. Jude’s Medical, the manufacturer of the device to,try to get more TN patients to get the implant.
Thank you Christine and I will look into. By the way does the insurance cover this kind of procedure for TN? I have Empire for the hospital and United Healthcare for the doctors part.
Thank you again.
I spoke with Dr. Casey about the PNS verses the MCS. Am I allowed to paste what he said on here for everyone? I believe it is great information because of who said it!!! HE recommended to me the Motor Cortex Stimulator back in August of this year but still have not had it done. I am scared of going through that and it won’t work. Everything I have tried has been unsuccessful, so I am skeptical now. I do know, if I decide to do anything, it will be with Dr. Casey. I really would like to post what he said, if I can!! It is good information for all of you trying to decide what to do after multiple failed procedures!!
I would like to know what was said because I have been suffering with TN for 17 years and have had the MVD, GAMMA-KNIFE and other procedures and nothing worked, I have tried all the meds there are and they did not help. Where is Dr. Casey located? I live in MA. but have gone to doctors in CT. , NY, Penn. , R.I, and a few other states. Thanks, John
He is in Michigan. I hope this helps. It for sure made up my mind not to do PNS. This is what he said:
Currently, the PNS devices have not enjoyed a durable result. They work, 60% of the time, but don’t seem to last. We think that is because the electrode is dificult to secure near the nerve, as you cannot suture it to the nerve. The reoperation rate is approximately 30% in the largest series. The stimulation series with better numbers are usually the occipital nerve, which can be secured. Most series lump them al together when reporting results.
For the MCS, the effect, once a successful trial is completed, is 65%, with 2-4% infection rate, 0.05% rejection rate(probably simmilar to PNS) and reoperation rate of 5% in our series of 60.
We can show you both techniques, so you can best decide.
Kenneth F. Casey MD FACS
I have talked to many supposed TN specialists in my area. None have heard of PNS or those that have... don't know of PNS being used to treat TN. Is there any official literature of TNS being applied to TN that I can have them read? The Veterans Hospital will pay for it, but I need a Neuro that will recommend it first.
My regular Doc recommended a pain management office that is using it for TN.I have read here of Neuros doing it or recommending it i believe.I recently found out i won't be a candidate because i have twice yearly MRI's which are a nono if you have a stim.
MilitaryMan said:
I have talked to many supposed TN specialists in my area. None have heard of PNS or those that have... don't know of PNS being used to treat TN. Is there any official literature of TNS being applied to TN that I can have them read? The Veterans Hospital will pay for it, but I need a Neuro that will recommend it first.
Dr. Jeffrey Brown in New York is using it to treat TN pain, and I believe the neurosurgeons at Emory Hospital in Atlanta Ga are also. I had my implant with Dr. brown, and he works closely with the rep from St. Jude’s trying to get this used more for TN patients. You might have your doctor contact Dr. Brown.
You can also try a Facebook group called Occipital and Peripheral Nerve Stimulators. The members are all very informed, and willing to share their experiences.
Best of luck to you!
Christine
Christine, I did go on that site on facebook but I scrolled down and down for a TN sufferer but only found migraine and ON sufferers. I could not find a discussion for TN or ATN. Sharon
MilitaryMan, I believe it was Christine that gave me a site to find doctors that do this. It is www.sjm.com, that is St. Judes Official Site, go to Patients, Neurostimulation and you can enter your zip code and get neurosurgeons and pain management doctors that are doing neurostimulation. I have not fully researched my area as I am interested in PNS so I believe what will happen is you will find mostly docs that do spinal cord stimulators but hopefully some that do PNS for TN. I have only found some info googling PNS for TN. I am ATN type 2. I have had a spinal cord stimulator for cervical and extremity pain and it does address extremity pain. I do know the leads are implanted under the skin. Christine has an excellent explanation on this page as she has had it done. They are doing it for ON too, that is occipital neuralgia. Sharon
Don said:
My regular Doc recommended a pain management office that is using it for TN.I have read here of Neuros doing it or recommending it i believe.I recently found out i won't be a candidate because i have twice yearly MRI's which are a nono if you have a stim.
MilitaryMan said:I have talked to many supposed TN specialists in my area. None have heard of PNS or those that have... don't know of PNS being used to treat TN. Is there any official literature of TNS being applied to TN that I can have them read? The Veterans Hospital will pay for it, but I need a Neuro that will recommend it first.
It's true there are not a lot of TN sufferers on the facebook page.It is a fairly recent procedure for tn.But i have seen some on there.And still there is good information and friendly helpful people.If you need further MRI procedures ,like i do,it's not for you. https://www.facebook.com/groups/232392623486874/
I was wondering if I had had a trial PNS put in over 15 yrs. ago and didn't help then but now all these yrs.later my tn has progressed to all kinds of places, now the left side but just my ear and lower jaw on that side and way new places on the right also. Is it possible to maybe help some now that it is so much worse? more help and or backup plans,A necessity when we are dealing with tn. The best to you, dawn
dawn, Christine has a great history of having PNS for her ATN on this page. I would surely think they have improved the way it is implanted after 15 years. I am interested. I was told by a PT regarding spinal cord stimulation has not improved over the past 15 or more years. That would make me a little concerned about PNS. I have had SCS for cervical and arm hand pain in '90 and it only helped for a few months and I became resistant to it. Sharon
Dawn Monarch said:
I was wondering if I had had a trial PNS put in over 15 yrs. ago and didn't help then but now all these yrs.later my tn has progressed to all kinds of places, now the left side but just my ear and lower jaw on that side and way new places on the right also. Is it possible to maybe help some now that it is so much worse? more help and or backup plans,A necessity when we are dealing with tn. The best to you, dawn
Thank you so so much for your post
I am going in for my trial on October 9. They have warned me about the hair shaving,and this was the first time I cried over a loss strange enough.
I have bilateral neuropathy branch 1 and 2 and my life us pretty much over with all these meds, and I’m still in pain. I manage the lightning bolt strikes with medical marijuana, but I have to reduce my nuerontin dosage as I am now in a constant fog.
I am very hopeful that this will work. I was not an MVD candidate as there was no shown compressions.
Is there anything, surgery complications wise that you can tell me?
Thanks
Stephanie