Hi all,
As promised, I am posting my experience so far with the PENS for my ATN pain.
The procedure was at 930 this morning. Had a consult with Dr. B in pre-op to be sure of the lead placement, and was given IV sedation. Woke up in recovery at about 12, and had a meeting with the rep from St. Jude’s on how to operate the control to increase, or decrease intensity, and how to run the different programs. I have two leads under the skin, wires running out from a small incision near the front of my right ear, and they are attached to an external remote control. So far, I have some soreness near the incision, and in my face from where the leads were tunneled, BUT, no burning, crushing pain!! Fingers crossed that this continues.
Alas, another bad haircut, but it is a small price to pay 
Will keep you updated
Christine
YAY!!!! have been reading about this and it seems to be a great solution to our problem!! hope it works well and indefinately!
WONDERUL news Christine! I hope the trial continues to provide pain relief. thanks for posting your experience.
I'm following your story closely. I'm exploring PNS. I've tried almost everything and living with this horrific pain is not an option.
I'm thinking positive thoughts for you.
Thanks for sharing Christine!
I hope this offers you long lasting relief!
Take good care of you and keep us updated!
(( hugs )) Mimi
My trial with the PNS has gone wonderfully well. The ATN pain is gone at some points during the day, and minimal at worst! I will be having the permanent stim implanted tomorrow morning, and will keep you updated.
Christine
Great news I pray that it continues to offer you relief and be an answer for you..Good luck keep us posted
Thank you Christine for update. Going soreness gone soon and pain as well. The haircut, just make it a “new style” glad you are feeling better! D
Is PENS same as P-Stim? I’m trying to get P-Stim now, been denied twice. I think it’s how doc writes up request?
Daryla I believe they are both abbreviations for a peripheral nerve stimulator. I did not have a problem getting approval from my insurance company, but my doctor did say some insurance companies look at it as experimental treatment. I would advise you to keep after the insurance company! There is a group on Facebook called Occipital and Peripheral stimulation that has lots of helpful members and info.ther are even examples of appeal letters to insurance companies. It is a closed group, but if you send the admin a friend request they will allow you to join.
Good luck!
shindig said:
Hi ShindigDoes insurance cover it? Who referred you for one, neuro, surgeon, pain specialist? I wanna try one.
The neurosurgeon who did my MVD in January is the doctor who suggested it, and he is the one doing the procedure. I have had ATN pain for almost 10 years, but I always attributed it to another condition that I have, so never sought treatment until January 2012. My surgeon feels that the amount of time (over 8 years) that I had untreated ATN really impacted the success rate of the MVD. In July we came to the conclusion that it was time to try the next step, the peripheral nerve stimulator. This treatment has been used for chronic back pain, and occipital neuralgia, for several years, but it still somewhat new in the treatment of TN, so some insurance companies are not that quick to approve it.
I must say it has been great so far! And compared to MVD, it is a walk in the park!
I would definitely recommend a trial if it is available to you.
Good luck
Christine
Thanks for sharing, Christine. As some of you know, I had a nerve block as the final pre-requisite for the Peripheral Nerve Stimulator and was approved for the trial implant. The drs said it was the end of the line since there were no other viable options for my ATN that I hadn’t tried or reacted to or gotten very sick from. Then the insurance denied it. The dr and clinic sent a rebuttal and I talked to some poor customer service guy at the co who answered the phone last Wednesday evening and had to listen to me go on and on for 40 minutes about how much I suffered EVERY DAY from TN and how my 2 daughters had lost their Mom to the disease (not) but when He was finally able to get off the phone he felt a little bit different about TN. Long story short: the surgery was approved although I am sorry that the poor dude on the phone had to call in sick Friday (yes really). So I am waiting to go on the surgery schedule. Christine, it really helps to hear about your experience, thanks for sharing.
Christine, your updates are so appreciated. Yes I want your new-styled haircut as well. :) I am newly diagnosed with TN and trying for find a medication combination that can work. Still on the lower doses of Tegretal and Cymbalta but my Neurologist asked yesterday if I wanted to meet with a Neurosurgeon. I will start investigating PENS. Do you know a good source of information for this procedure? I am definitely motivated as that drinking food through a straw is getting old. But I am trying to be grateful because I realize how much more pain is possible with TN. Thanks again Christine. And best of luck! Tina
msbluebells said:
The best resource I found was a group called occipital and peripheral nerve stimulator on Facebook! It is a closed group, but if you send a request to the admin, she will add you. Great members who have posted lots of info. Just my experience, but I don't know if a surgeon would recommend the PENS before something like MVD, as MVD actually corrects whatever is causing the compression on the Trigeminal nerve. The PENS is more of pain management, in my case anyway. Good luck, and keep me posted:)Christine, your updates are so appreciated. Yes I want your new-styled haircut as well. :) I am newly diagnosed with TN and trying for find a medication combination that can work. Still on the lower doses of Tegretal and Cymbalta but my Neurologist asked yesterday if I wanted to meet with a Neurosurgeon. I will start investigating PENS. Do you know a good source of information for this procedure? I am definitely motivated as that drinking food through a straw is getting old. But I am trying to be grateful because I realize how much more pain is possible with TN. Thanks again Christine. And best of luck! Tina
Well, I had my permanent stim implanted today and I feel AWESOME! The incisions are actually less painful then the ones I had for them trial on Friday, and the device actually seems to work better than the temporary one. I am still almost in a state of disbelief that I have no more pain on my right side!
Only downside is yet ANOTHER bad haircut, and that the battery (beneath the skin just below my collarbone) will be noticeable, but still, a fantastic trade off.
I encourage any of you who has been given this as a treatment option to consider it. I feel so lucky to have a doctor who is an expert in TN, and who offered this to me. I feel as if I have a new lease on life!
TL said:
Good for you! I am glad you kept after that insurance company and got the approval! We patients really need to our own advocates, don't we. Please let me know when your surgery is scheduled, and feel free to ask me any questions! Best ChristineThanks for sharing, Christine. As some of you know, I had a nerve block as the final pre-requisite for the Peripheral Nerve Stimulator and was approved for the trial implant. The drs said it was the end of the line since there were no other viable options for my ATN that I hadn't tried or reacted to or gotten very sick from. Then the insurance denied it. The dr and clinic sent a rebuttal and I talked to some poor customer service guy at the co who answered the phone last Wednesday evening and had to listen to me go on and on for 40 minutes about how much I suffered EVERY DAY from TN and how my 2 daughters had lost their Mom to the disease (not) but when He was finally able to get off the phone he felt a little bit different about TN. Long story short: the surgery was approved although I am sorry that the poor dude on the phone had to call in sick Friday (yes really). So I am waiting to go on the surgery schedule. Christine, it really helps to hear about your experience, thanks for sharing.
YAY!!!! good news!! ;-) so glad you are not feeling atn pain!!
Awesome news..Hopefully you are now pain free for life.....Good Luck
There is advertising for the P-STIM from Montvale, New Jersey website wwwmontvalehealth.com I called they advised it is used for TN It is just so far away. I was hoping to find someone in the Florida area. Does anyone know of such a place? Montvale Health Ass. advertised that it has been recently FDA approved and also covered by Medicare....
Where is your Doctor located?
Christine said:
Well, I had my permanent stim implanted today and I feel AWESOME! The incisions are actually less painful then the ones I had for them trial on Friday, and the device actually seems to work better than the temporary one. I am still almost in a state of disbelief that I have no more pain on my right side!
Only downside is yet ANOTHER bad haircut, and that the battery (beneath the skin just below my collarbone) will be noticeable, but still, a fantastic trade off.
I encourage any of you who has been given this as a treatment option to consider it. I feel so lucky to have a doctor who is an expert in TN, and who offered this to me. I feel as if I have a new lease on life!
:)
I believe Kathy had hers done by a doctor in Florida, she can tell you his name. Unfortunately, my story has not had such a happy ending because I had my trial for 7 days and 75-80% of the pain was gone, it was incredible! I felt like a real person who could talk and chew and whose brain was not so horribly impacted by pain. The Permanent Implant was scheduled for three weeks later and my insurance company denied the final surgery. I did everything I could do, as did the Dr doing the surgery, my Primary Care Dr, my Neurologist, and my Neuro Surgeon. All were in agreement that every other treatment that could be used had been used had been tried, including horrible side effects, etc. They refused to pay for the surgery, saying that “Just because they made a mistake and paid for the Trial Implant Surgery by accident they were not going to set a precedent by paying for the Final Implant Surgery”. Amazingly, I was not informed before my Trial Implant Surgery that it had been approved “by accident” and that the decision had already been made that I would NOT be allowed to have the final Implant Surgery. If I, or my Dr., had been informed that they would NOT be approving the Final Implant Surgery I would never have had the surgery or the risk of having leads hanging out of my head and attached to a machine for a week!
Despite my experience, I would encourage you guys to try this treatment if you have AtypicalTN / Type2 like I do. They said that if you have 50% reduction in pain it is successful but I had 80% and it was incredible. I forgot what it was like but for 7 days I was reminded what it was like to be a “normal” person. It is amazing! Take care!