Hi Ron,
Welcome to the forum, and thank you for posting that wonderful information. I know that questionnaire, and agree that it is a very helpful tool. I think that this is it:
https://neurosurgery.ohsu.edu/tgn.php
And to the rest of my dear friends here, easygoing, calewark, BMW, Mark, and every other person here, thank you for the awesome support regarding my last appointment.
What I did was break the cardinal rule with doctors - do not self-diagnose and tell your doctor/surgeon what to do - you may know full well what the problem is, but you HAVE TO let them figure it out. Otherwise their larger-than-life egos may be offended. (This is especially relevant if you go in with that questionaire in hand! )
I'm doing better, the problem will eventually get surgically resolved, and hopefully I will have a better functioning system thereafter. Lisa, I think you are spot-on about the weeping and sadness.
Hugs to all my friends here,
Lily

Hi, I'm Mary. I've just spent the past two hours reading this awesome, hopeful, and mega-helpful thread because... don't want to jinx myself.... my Pain Specialist is submitting approval request to my insurance co. for a PNS!!!! I have ATN primarily in V2 and now some in V1 (upper cheek and around eye). I was diagnosed three years ago but I've had it for 20 years. Always thought I had bad sinus headaches. My pain has gotten much worse in the past 2 years, especially this past year. I have been through all the anti-seizure meds and antidepressants that are supposed to help and have had two radiofrequency ablations with zero success. I'm just DONE with the pain and the drugged semi-existence. I want to be ME again -- the me who had energy and fun and who could walk into a room without checking out where the a/c vents were and who could take a walk in the crisp fall air. I also used love to snow ski but I am realistic enough to not include that one on the list, LOL.

I have a question. It seems from what I've been reading that the electrodes were placed in the area where the pain is, not on the branch of the nerve close to where it exits the trigeminal ganglion? Like if pain is on your cheek right under your eye near the nose, they implant the electrode there? My doctor said today that he will place the electrode on the branch of the nerve along the edge of my face - not where the pain is. Anyone else have that??? Thanks, look forward to meeting everyone! Lily, I remember you from the old TN forum on BrainTalk. I was Mary0705. I remember all the bad luck serious trouble you had after your MVD. I am so glad to see you are doing okay. I hope your PNS ends up working wonders! I post sometimes on the TNA forum - I am lilysmom over there. MY Lily is a vulgar, obese white bulldog, LOL! I actually have two white bulldogs, the other whom is a sweet lovey baby named him Cesaer but l never can spell his name right so that's why I am bulliemom here!

Hi Mary,
I don't know exactly how to answer that question, becuase it has some layers to it. I can say that the electrodes are not placed where the nerve leaves the trigeminal ganglion. That is more inside the brain than out, and that surgery is called gasserian nerve stimulation, or something saying gasserian (why isn't my memory working? stupid question... could be gasserian root stimulation), and that would mean brain surgery. I've explored that route with my NS, he would not do it. It is, however, performed in Germany - I know someone who had it, who later had it removed due to infection.
So THAT I am clear on. I also know that there are 3 or 4 portals where the nerve comes through the skull and out into the tissue. The V1 and V2 ones are at the cheekbone, beside the nose, and a few different ones up at the eyebrow, and these spread branchlike throughout the face.
Now, what I don't know, is whether the neurosurgeon is shooting for these portals or not when he places the leads. Common sense would suggest that yes, these are what they are trying to hit with the electrodes - however, my NS has left me uncertain as to whether he is trying for these or not. He says that I have central pain syndrome, and the pain is as much a product of my mind at this point as it is of the nerve. This is not to suggest that it is psychosomatic. He says it's more like a pathway that gets worn into the ground with repeated footsteps, like a monk walking in a circle. The brain creates a closed loop of pain.
So, I do not mean to be confusing, and I do hope that someone has an answer to that question, because I would like the answer to it myself.
So, are they shooting for the nerves, or just the area that is ennervated?
Thanks bulliemom for that question.
Lily

Thanks Lily. You're right, I did not mean inside the brain! eeek! Not ready for that one! Yes, the branches of the nerve. Mainly V2 for me with some V1. My most painful area is the infraorbital nerve under my eye socket close to my nose. If he could just get that one spot I'd be happy! I call it "the mother-lode" of pain. That makes sense about the nerve path getting worn down like a monk walking in circles. When I went to the Cleveland Clinic the doctor there recommended their 2 or 3 week long cognitive behavior therapy program where they work on 'reprogramming' the brain's reaction to pain signals. I don't have the time or money to do it, but it would be nice. I'd just love to go away from work and home responsibilities and just stay at the hotel for 2 or 3 weeks!
Mary

It is nice to see you Ron and Bulliemom .

@Ron welcome to neurotallks t.n. forum.
Yes it is very true that most doctors do it below the neck. That is because for treatment in managing t.n. atypical , Bi Lat ,a.d. ect pain above the neck in face, head eys etc..)
It is not approved by the FDA or the gov. yet as a option . For spines and back it is... so yes it is hard to find a doc. even tho it is the same stimulation device. the olny difference is the placement. Perhaps that will change.

@Bulliemom and Lastnerve
As far as I understand this whole PNS stimulator implant idea..
They are trying to target a certain area of the branch of one or more ..v-1 v-2 or v-3 .Cheryl has one for each branch. anyways the idea is to hit the nerve branch in a ideal area so the pain signal is scrambled or interrupted ... makes static of the signal before its back to your brain telling you "Pain Pain". trying to at least lower the baddest pain. they are trying to go for the branch. my guess would be to target the area right before the damaged part..if they know where the damage is...
tho Easygoing hers is in back of head and slightly different then a PNS. I think not sure. have to go back and read.
and again I say IT DOSE NOT MAKE YOU PAIN FREE!! it is a way to Help manage the pain... Being able to lower my pain down a bit.. For me it saved my life.
The hardest thing is having to face and realize that I have this pain for me it isnt going away . to learn how to co habituate with the pain. Hard to do for sure ...accept it face it figure it out ... but thank God for forums like this and people like us...

I have personal things going on at moment but will be back soon . sending prayers and positive energy to the room.

PEACE
BMW...Tina

Hi Lily
Nice to see your post. It has been awhile since I posted much on the site. Seems like fall brings lots of work in my garden and house. I also am getting ready to go to Florida to meety with 6 other gals who all have Tn and some with Tn and Ad like me. I am the only one with the stimulator. They are all anxious to see it work.
Hope all is well with you and your pain is not getting you down. Take care and take care of yourself.

Love
Cheryl

Hi Cheryl, Nice to hear from you too
Yes, it's like battening down the hatches for winter. Your meetup sounds GREAT! Promise to come back and report in about it - I would LOVE to meet someone with this disease. How is your stim working out for you?
I'm doing much better, thanks for asking.
Take care, and have fun!
Lily

It has been 4 1/2 months since the implant of my SCS for atypical face pain. My recovery has gone well and I return to the doctor next Monday. I also meet with the BS rep to see if he can tweek any of the programs. Most days the stimulator is sufficient for relief. I think my tolerance level is much higher than when the pain first started.

I have been having nightly headaches and pressure in the back of my head, so I am back taking one dosage of Lyrica. I am not sure if it is doing any good.

When my pain first started, my MRI showed a meningioma (benign brain tumor) on the lining of my brain. It was wait and see if the tumor grew. If it grows too big, it can cause various problems and would need to be removed. My 2 year follow-up CT scan (no MRI's anymore) showed it has doubled in size. The NS recommends gamma knife (radiation) surgery to stop the tumor from growing. The surgery is not scheduled yet -- probably during the winter. It is a blessing that I needed the original MRI and the tumor was discovered. Most people find out about their meningioma when they are having issues (stroke or coma).

I also was diagnosed with Celiac Disease as a result of all of the blood tests that were run as part of the diagnostics of my pain. Another blessing that this was discovered.

I have complete confidence that God is in control. He made sure I found out about my tumor and Celiac Disease. He has also been faithful to allow for the treatment of my face pain.

I just wanted to share my story and God's blessings!!

Emelie

These are the words I needed to see tonight as I came on here. Faith that God is in control. Faith that God is in control.

Thank you, Emelie,
Mark56

Hi friends,
it has been a while since I have posted on this thread. Cheryl, I was reading back , and I would love to hear how your TN meet-up went! And Bulliemom, I have the same point on my nose, and I also see it as the "mother-lode of pain". It was one of the points that we were trying to hit with my PNS.
I want to report back in since I saw my neurosurgoen. He was in a jovial mood again, nothing like the temper he threw at me last time. My husband, after we left, pointed out that one of the comments he made was as close as he could get to apologizing for the last time.
Anyway, we spoke for a while again. he wanted to try to reprogram the leads himself, but the computer had not been used for so long that he just gave up and said "Oh. just lets do the surgery - I have already had the tool made up to do the re-placement anyway"
So I will finally get on the schedule. This is what needed to happen. I really need him to hit that sweet-spot that buliemom wwas talking about on the nose - it is getting missed by the current config, and it really made a huge difference during the trial. I have a photo that shows exactly where it was, and he told me to bring it, and he would use the photo in the ER to position it - yay!
So, this took many months, but we are finally getting there.
Oh, and my lead has gotten caught up in scar tissue down my neck, and as a result I cannot really tip my head to the left. He said that he would have to fix that with a different surgery at a different time. Somewhere closer to April! He said to just not tip my head to the left until then. Right. That's likely to happen.
One more thing that he brought up is that one of his colleague/friends (the only other NS in this area who does pain/stim brain surgeries) has found a successful way to do the gasserian nerve stim, and mine feels excited to try it. I think, this time, that I will let him cut his eye-teeth on another patient. I would love to try it. I had asked for it the last time, and he had said "no". I had researched it and it did look promising in the medical journals, at least.
So, that is my update, I wish that this all had taken place with allot more speed. I understand that he is up to his ears in really important surgeries such as DBS and MCS, but I am just as important. He really wants to just have me get the MCS done, but as bulliemom mentions above, she remembers my complication after complication (6 month worth, including meningitis) and then my near loss of life, and the MCS just doesn't seem approachable to me. I have seriously thought about therapy to deal with this fear, but I just don't know if I even want to go that far. It is my life to gample with, after all, and my brain seems to be really adverse to being disturbed. Ughh - I tear up every time I even think about what my husband must have experienced to watch me code. I am doing it as I write this, in fact.
Thank you to anyone who has made it to the bottom of this post, haha
Happy Holidays, and love to you all, and a super big hug to my lovely friend Tina. Hope to see you back, but take your time, sweetheart.
Lily