Hi-
Does anyone know where the leads are placed for a neurostimulator that is implanted for TN pain?
Are they placed in the cervical spine area or higher near the brain stem?
Thanks,
Bob E.
I think you are referring to
The motor cortex stimulation. In this surgery the leads are placed on the brain itself. However I could be totally wrong about what your referring to haha
Hi Bob
I have a PNS for TN. ( I have all three branches of the nerve involved).The battery is in my chest, just beneath my collar bone. I have two leads, and they run from the battery up my neck. Both leads are just beneath the skin; one goes in front of my ear and into my cheek, and the other goes up behind my ear into my temple. The are not visible at all.
I would be happy to answer any other questions you might have!
Christine
Thank you Christine for your very informative reply. Pain Doctors in West Michigan where I live have done PNS for cervical and lumbar pain, but very few for TN. I will stay in touch with you.
Bob E
Christine said:
Hi Bob
I have a PNS for TN. ( I have all three branches of the nerve involved).The battery is in my chest, just beneath my collar bone. I have two leads, and they run from the battery up my neck. Both leads are just beneath the skin; one goes in front of my ear and into my cheek, and the other goes up behind my ear into my temple. The are not visible at all.
I would be happy to answer any other questions you might have!
Christine
My pleasure. There are not too many doctors that use the PNS for TN. my neurosurgeon, Dr. Jeffrey Brown in NY works very closely with the manufacturer of my device, St. Judes Medical, to get try and get more patients to have this as an option for pain relief.
I have had mine since August 2013, and it is the greatest thing!
Christine-
I am so glad to hear that the PNS has helped you! From the research that I have done, Dr. Jeffrey Brown has a very good reputation, especially for treating facial pain. On the St, Judes Medical website, I have located two doctors in West Michigan that have used the SJM PNS, for lumbar and cervical pain, not necessarily facial pain,. One of them is a pain management doctor and the other is a Neurosurgeon. I am going to schedule appointments with both of them and go from there.
If I find that that they may not want to treat facial pain I may see if a trip to see Dr. Brown is an option. I'm not sure how long I would have to stay there is he treats me.
Your response to my question is very encouraging to me. Thank you.
Bob E.
Hi Bob,
Just for your reference, I had the trial stimulator implanted on a Friday, and the permanent implanted on the following Wednesday. Both procedures were outpatient.
Thank you Christine-very helpful information.
Bob E.
I had gamma knife in 2012. Will a PNS still be potentially helpful to me?
Bob E
Christine said:
Hi Bob,
Just for your reference, I had the trial stimulator implanted on a Friday, and the permanent implanted on the following Wednesday. Both procedures were outpatient.
Not sure. The function of the PNS is to send different stimulation to the nerve, which replaces the pain signal.
Following! I am considering having this done. Trying to find a doc in my area who does it. Also considering motor cortex stimulation. Want the one that will give me the best results.
What is involved in making a trip from Michigan to New York to see Dr. Brown? Which office location would be best for the St Jude PNS? And which airport is best to fly into and then arrange transportation and lodging for such a consult and procedure?
Bob E.
Christine said:
Not sure. The function of the PNS is to send different stimulation to the nerve, which replaces the pain signal.
I would call the office (516) ■■■■■■■■ and ask to speak with his assistant, Kathy. She is wonderful, and will be very helpful in getting your appointment set up. I flew into LaGuardia, but Kennedy is just as convenient. I have used Uber for transportation from the airport. I am fortunate enough to have a sister that lives quite near Dr. Browns office, so,I haven’t had to stay in a hotel. I assume Kathy can give you some suggestions, as Dr. Brown has patients from all over the world.
Best of luck! Let me know if I can answer any questions, and keep me posted!
Christine
Christine,
I will be calling that office, and see what I can work out with Kathy.
I am very thankful for people like you,Christine, and for this support group. It is a place to turn to, especially when family members and friends don’t really
understand.
I will keep you posted and you know I may be asking questions.
Thanks,
Bob
Ask away! I am more than happy to share my experience. This group gave me so much support and advice, and I am honored to be able to help even one person!
Any problems or limitations with daily activities or anything you have been told not to do? Any special updates or programming required to maintain the PNS and if so, can MD's in your area help with that.? Bob
Christine said:
Ask away! I am more than happy to share my experience. This group gave me so much support and advice, and I am honored to be able to help even one person!
For the first few weeks after the implant you cannot lift anything heavier than 5 lbs, and your neck muscles will be a bit weak. You will do some gentle stretching, but also be careful with those muscles for quite some time. I have had reprogramming twice. My St Judes rep in NY was able to put me in touch with a local rep, and I meet them at a local pain management doctors office for reprogramming.
Lastly, I avoid all metal detectors and X-ray machines. I get a “pat down” at airports. Some people think this is an unnecessary precaution, but my St. Jude’s rep advised me not to go through the detectors.
All things considered, these few things are a small price to pay for the relief I have gotten with my PNS.
I have had some surgical recoveries that were intense and difficult, so I am optimistic that I could deal with what you have described. I have an appointment with pain management doctors here soon, and I know they use St Jude’s PNS as well as some others for cervical and lumbar spinal issues, so I will tell them about my plan to see Dr. Brown, and hopefully they can do
necessary reprogramming here in my area. Once again, many thanks for the excellent input and information. I feel very positive that this will help with my pain.
Bob, the recovery from the PNS surgery was really easy! I am sure you will get through it with no issues. Just to clarify, a St. Jude’s rep would do any reprogramming that you need, but you must meet with them in a doctors office. Should be no problem.
Please keep me posted!
Christine,
I have made contact with NSPC, Dr Brown’s office, Kathy was not in, so I was referred to “intake” and I was asked all the personal questions, it was very thorough, which is a good thing. I am now gathering all the info. they need, treatments and procedures, etc. Before you saw Dr Brown for the first time, did you do any due diligence, such as number of procedures he has done, and what his success rates are? Or, were you referred by someone you knew and trusted? My hope is that when my medical history is reviewed,
He agrees to see me. Thanks. Bob.
N
Christine said:
Bob, the recovery from the PNS surgery was really easy! I am sure you will get through it with no issues. Just to clarify, a St. Jude’s rep would do any reprogramming that you need, but you must meet with them in a doctors office. Should be no problem.
Please keep me posted!