Well, I saw him (my NS) today, and he doesn't seem to think that it will be all that easy to move my lead, and begrudgingly agreed to do it, but he said that it will take a special tool made to do it, and, well if that doesn't work, then he'll just have to pull it and that is major and blah blah blah, and it just reduced me to tears. You guys, I've just been losing my 'brave' lately - you haven't known me for the last few years during all the other surgeries - I've had my chin up. And I just don't know now - it's getting harder and harder. I felt like he would rather have hurt my feelings than to swallow his neurosurgeon pride. So Once the floodgates opened I just couldn't stop and cried all the way home. So now my face is just screaming with pain. Ughhhh. And Dear sweet Tina, before you get on the phone to call and help me feel better, it will just make me cry more and then the pain will be even worse, so if you wouldn't mind, please give me a day to just distract myself and eat some ice cream and watch movies so that I get my mind off of this until I am in a better space. I love you honey, but I know that I can't afford to cry any more today.
I know that things will be better tomorrow, they always are after a day as crappy as today!
Love to all,
Lily

Now how did you know I was waiting till 7 my time to call you today?

by now I bet you have a few choice names you have called the PNS eh.
Luv ya back
I will have you in my prayers and my thoughts and will catch you next week with a phone call. TAKE CARE OF YOU!!
PEACE
BMW...Tina

p.s. one step at a time . we are here for you to hold you up and keep company.

Tina,

Lily

My last nerve - I just wanted to say I am so sorry for all the problems with your lead placement. keep at it though. you have come this far, know it has been hard, but get it right. No reason to stop at this point.
also wanted to let you know, I have had my stim for a month and even though it has been working well, I have been having quite a few weepy and sad days. I think it is just the culmination of the last few years and trying to get the pain fixed. it is kind of strange, I finally get the stim and start getting some relief and I get all sad and weepy.
part of my problem has been realizing I am never going to be fixed... I am starting to feel better emotionally. I am trying to just be grateful for what I have each day.
just wanted to know that I am here to support you and keep pushing until you get that lead fixed and have it working properly even though it is hard. I am rooting for you.
Lisa

I am new to this forum but have seen many of you on the TNA web site forums. God bless you for posting and giving the rest of us some clues on how to find help- especially calewark and BMW who have pointed me to PNS/SCS. After four sinus surgeries before successful diagnosis of TN Type 2 at OHSU in 2006, 3 years of many meds including trileptal and Lyrica, SRS at UCLA in 2008 with zero success, MVD in L.A. in 2009 that cleared the original pain but created all new deafferention pain and started Fentanyl plus hydrocodone in 2010, I am searching for doctors who perform PNS/SCS. Found many doctors who do PNS/SCS on the Medtronic, Boston Scientific, etc. web sites but they all use it only below the neck (mainly spinal pain). My pain doctor is going to ask the Boston Scientific sales rep and I have sent questions to all the manufacturers web sites about doctors who use these devices for face pain. Now to the point, with the correct words in the search engine today, here is a new online TN diagnostic questionnaire from where I got my original diagnosis after MRI and physical examine by Dr. Kim Burchiel and Dr. Andrew Zecast at Oregon Health & Science University (OHSU). These doctors are the west coast leaders like Dr. Peter Janetta is an east coast leader in treating TN. And, he makes presentations and publishes at the TNA conferences.
I have not posted enough to allow inserting web site info but you can search on ohsu.edu then school of medicine then neurosurger or neurological conditions to find the online TN diagnostic questionnaire and info on PNS/SCS treatment. You have to submit the diagnostic questionaire to get excellent explanations of the types of TN and suggested treatments for each). Will post again if or as I find more doctors who perform PNS/SCS for face pain.

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

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