I have noticed there have been several questions popping up lately about PNS( peripheral nerve stimulators) and thought I would share my experience with mine.
In November of 2012, I finally got my official diagnosis of bilateral ATN. I had been experiencing intermittent burning boring pain in my right scalp and upper teeth for nine years, but always attributed it to another condition, a Chiari Malformation. They pain became intense and chronic in December 2011, and the shocks started in January 2012. My left side became affected in October 2012.all three branches on both sides! I was allergic to Tegretol, and was maxed out on Gabapentin, but still had constant pain.
I had MVD on the right in January 2013. The shocks were gone immediately, as was the boring pain. Unfortunately, the boring burning pain returned, and I was never able to reduce the Gabapentin. In July, I went back to my surgeon, and after ascertaining that there was no new compression on the nerve,he suggested the PNS. This is a system of leads, or wires, that are placed along the path of the trigeminal nerve, and connected to a battery. The leads send electric stimulation to the nerve, which changes the pain impulse. The unit is controlled with handheld wireless device, increasing or decreasing the amount of stimulation.it is all implanted just under the skin, so the procedure is outpatient.
I had a trial implant on August 16, and as it worked so well, the permanent was implanted on August 21.
As I still had ATN pain on my left, I continued with Gabapentin. On October 14, I had MVD on the left, and it was a success. I no longer take any meds, as the left side pain is gone, and the right side is completely managed by the PNS.
I urge anyone who is med resistant, or still in pain despite surgical procedures, to look into a peripheral nerve stimulator. It has made all the difference to me!
Best to you all
Christine
Thanks for sharing!
YAY!! so glad to hear you have found a solution!! I am recently diagnosed-- very early in the disease-- but I find the more knowledge I have the more calm I can be about the future. Tegretol got me into a remission. I have been very interested in the PNS from when I first read about it-- glad they are using it for tn and not just migraines!! Blessings for a pain-free life!!
Topcat, it's good to know that Tegretol is working for you but I don't think you can say your are in remission. It's just a stop-gap. Tegretol is hard on the system and you need to keep looking for a more permanent solution to the problem. I took Tegretol for a long time (too long) but finally had the surgery (MVD). My pain has been gone for years--on that side. I did get TN on the other side and had cyber-knife surgery on that. No pain on that side either, now, but the cyberknife surgery left my face numb and slightly paralized. Better than the pain...so I'm happy!
tacocat said:
YAY!! so glad to hear you have found a solution!! I am recently diagnosed-- very early in the disease-- but I find the more knowledge I have the more calm I can be about the future. Tegretol got me into a remission. I have been very interested in the PNS from when I first read about it-- glad they are using it for tn and not just migraines!! Blessings for a pain-free life!!
Wow! This is the first time I’ve heard that someone else also suffers from both conditions…other than me!! I completely feel your pain and agony! I was diagnosed with chiari malformation in early 2011 and followed with decompression surgery in sept 2011. I was so hopeful that the surgery would ease the insane, very intense headaches and head pain, especially after having a very long 3 month recovery. Unfortunately, the decompression was not successful and ive still gone on with the pain…it didnt work. I had had major headaches for nearly 10 years prior and had tried a whole cocktail of meds, all of which were unsuccessful. I still suffer. Now, a couple months ago, I had my first TN attack. It was the moat incredible, intense, and unbearable pain I’ve ever felt!!! After nearly two days of almost constant pain and misery, I went to the ER where I was very lucky to get a doctor that immediately knew what the problem was and within 5 minutes he has IV’s in my arm and was pumping me full of pain meds, nausia meds and giving me nerve meds. I thought he was crazy at first…I couldnt understand how something like that could just suddenly attack…until he took the pain away! About 2 weeks after my first left side attack,my right side attacked. Talk about truly unbearable when both sides of my face are on fire and jolting me and having a chiari headache to top it off. For the first time in my entire 31 years, I truly had very dark and scary thoughts running thru my mind about how to end the pain. That scares me so bad! Now I’ve once again been trying another cocktail of meds trying to get this under control, with very little success. I have a 5 year old son and it breaks my heart when he has to see me suffer from these aweful attacks. He asked my mom if I was going to die. Ive been considering having gamme knife done now…but I worry that it will only be temporary, if anything. This option has never been expressed to me, but I most definitely WILL be discussing it with my doctor next tuesday at my follow up apt for any med changes and to discuss gamma. I will be praying for lasting relief for you. I truly KNOW your pain and wouldn’t wish it on anyone. Thank you for the new info…god bless!!
Thank you for sharing your experience with PNS. Where did you get this done? Sharon
HI MY NAME IS ANNIE I HAD CYBERKNIFE FOR AN IN MARCH OF 2011 AT THE ROYAL MARSDEN THE TREATMENT WAS FINE BUT ABOUT A MONTH LATER I HAD TERRIBLE SHOOTING PAINS ALL OVER MY RIGHT SIDE 0F FACE COULDN'T APPLY MAKE UP OR COMB MY HAIR HAVE BEEN TAKING AMITRIPYLINE EVER SINCE HAVEN'T HAD A LOT OF HELP BUT MY GP SENT ME TO THE PAIN CLINIC AND I HAD NERVE MODULATION PAIN LESSENED FOR ABOUT A WEEK AND HAS NOW COME STORMING BACK. LAST NIGHT WAS THE WORST IT HAS EVER BEEN COULD HAVE SCREAMED TOOK PARACETOMOL AND APPLIED OILVE OF CLOVES WORKED SLIGHTLY BUT I HAVE HAD MY TEETN CHECKED NOTHING WRONG. ON MY LAST FOLLOW UP I WAS VIRTUALLY TOLD I WOULD HAVE TO LIVE WITH IT NOT VERY HAPPY. I HAD THE CYBERKNIFE AS I AM ALLERGIC TO THE ANAESTHETIC THAT IS WHY I OPTED FOR CYBERKNIFE ANY HELP IF ANY ONE HAS HAD THIS PROBLEM WOULD BE HELPFUL
HAPPY CHRISTMAS EVERYBOLDY
Annie,You should look for the PNS treatment.Im not sure they are offering in UK assuming that's where you are.Your neuro or pain management clinic will know.I had Gamma in July and am pain&drug free.I know it may return,but i don't regret doing it.I was in horrible shape with extreme pain i don't need to explain here.Neuro told me i could take one more Gamma treatment if needed.What does the doc say as to why it didn't work?Maybe you need another shot at it?I will try the PNS if my pain returns.I have a very slight tingling,tickling feeling around my eye i notice sometimes,but it is nothing.
Annie, I just read your post. I am so sorry you have not found relief with cyberknife and then PNS failed or nerve stimulation. Your condition sounds like the negative side effect of your procedure which is anesethia dolorosa, excuse the misspell. Hopefully a moderator will correct me. This is very difficult to treat. I am atypical so I will not do a procedure like MVD or any of the other alternative procedures like RF, rhizotomy or cyberknife because I have been told these procedures could make me worse...so PNS is the only thing I am going to try. Make sure you did get the right type of PNS, peripheral nerve stimulation or they are also doing motor cortex stimulation for TN another option for you if the PNS has failed. It is just hard to find someone who does it. Someone posted a great response for a doctor in New York, Jeffery Brown who did her PNS and she is nearly pain free. I am living with my facial pain at this time, some meds are sometimes helpful and I have had remission but I do not believe I am at the level of pain you are describing. I have had to learn to live with a lot of issues from failed back surgery and now this facial pain but I am not ready to accept I have to learn to live with this ATN yet, neither should you, get another opinion. My very best wishes to you during the holiday season. Sharon Christine posted her positive response to PNS and where she had it done.
I appreciate you all so much for sharing here......I, too, am early diagnosed, taccat, but I am feeling a bit overwhelmed by it all. I am on my way to FINALLY see a local general neurologist (after having gotten in to see a neurosurgeon yesterday). I HATE taking meds, and too, fear what Tegrotol is doing to the rest of my body, so am trying to keep the dosage low. I worry about the future and "if I am up to confronting the pain"..... all your sharing has helped me this morning. Thank you
If I may ask who was the doctor who performed the PENS
Bill
i am aware of a simuliar device i have the motor cortex stimulator under skull on right side for left sided ATN pain it also has battery and remote device for changing programs.has helped me so much! but then i got second condtion on right side of face called ramsy hunt syndrome.. and left with horrible spasm under ear and tn tendency pain in temple above eye while chewing etc. kinda freaked out about doing the whole brain surgery again when dr offered to do another implant on other side so i declined. now six year later this sounds less evasive!
Question? where exactly are the leads implanted? above temple? facial? skull? or does your pain determine where he placed them?
thanks
julie
Yes, there are wonderful things happening with new leads for PNS's. I'm glad to hear of some of the success stories. I had one placed in my jaw six years ago. It didn't take, but only because it stopped just short of where my nerve was damaged. I had one put in my leg three years ago, and it works to control the pain in my foot beautifully. I was on deck for the new trials for new leads my doctor had developed, and then a year ago, a second TN mishap occurred and it roiled-up my trigeminal nerve so badly, the pain broke through the meds that were containing it. Since the pain is now so acute, I'm no longer a candidate for the trials. I'm scheduled to have a "subcutaneous placement" of a neurostimulator on January 7th. They will put the stim directly into my spinal chord.
Who was your doctor?
Dr. Michael Stanton-Hicks at The Cleveland Clinic
Well-- I am not sure I guess-- but I am off the tegretol and have been for two months and the pain has not come back yet! I read that if you go three months without pain you should wean off drugs and I did... is that a remission?? new to all of this!!
kerenkaye said:
Topcat, it's good to know that Tegretol is working for you but I don't think you can say your are in remission. It's just a stop-gap. Tegretol is hard on the system and you need to keep looking for a more permanent solution to the problem. I took Tegretol for a long time (too long) but finally had the surgery (MVD). My pain has been gone for years--on that side. I did get TN on the other side and had cyber-knife surgery on that. No pain on that side either, now, but the cyberknife surgery left my face numb and slightly paralized. Better than the pain...so I'm happy!
tacocat said:YAY!! so glad to hear you have found a solution!! I am recently diagnosed-- very early in the disease-- but I find the more knowledge I have the more calm I can be about the future. Tegretol got me into a remission. I have been very interested in the PNS from when I first read about it-- glad they are using it for tn and not just migraines!! Blessings for a pain-free life!!
Yes, tacocat, that’s a remission!! So pleased for you! To encourage you, I’ll share that my remission lasted 8 yrs for my right side and 10 yrs for my left!! I hope yours lasts longer!
(( hugs )) Mimi
Christine thanks for sharing your experience…I’m going to mention this at my neuro appt. next week!
Mimi xx
Thanks for this, Christine. Useful, and clear description... also, so glad to hear the good news of your recovery!
Hello all,
The doctor who did both my MVDs and the PNS implant is Dr. Jeffrey Brown in New York. He is an excellent doctor, and his practice is focused on TN and ALL its treatments. He has encouraged me to share my experience with others, because he truly does want to help those that suffer with TN.
I have two leads. One is along side the front of my ear, into my cheek, which manager the pain in my face, teeth, and nose. The second one runs up to my temple, and covers my upper face , forehead, and scalp. Theses connect to a battery that is in my chest, just below my collarbone.
For those of you considering a PNS, the two companies I know of that manufacture them are Medtronics, and St. Jude Medical supply. If your doctor is not familiar with the PNS, you can call either of these companies, and they maybe able to put you in touch with a doctor who is.
Please continue to ask me any questions you have. I am more than happy to answer!
Best
Christine
I had a stimulator placed in July. It has helped with my daily pain with the meds. I still have break through pain which gets worse when the weather changes and with the cold. I did recently start having more pain. I have had to have quit a few adjustments. My dream was to be drug free and that hasn’t come true yet.