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

Its been a double loop roller coaster ride for me lately.
But while I was going threw boxes of papers and pics I found ones of me after I had my final implant and wanted to add them on this thread.
I have mine for v-3 the lower RIGHT . batter under my left arm along bra line...needed to be placed there because of history of breast cancer... those who have implant need to consider placement of battery . have the wires across to mid back and then up and to lower right side of jaw .
anyways. very tired but want to post these up before the pics are lost in one of the many boxes i have.
I will be back soon , just had memorial service for my mom on new years eve and then yesterday family stood in surf as I waded out and let my mom go in the ocean waves.
anyways so off topic sorry. I just want to get these pics up. Keep in mind I had this done in 2002 but here is pics of T-Rex . I wish I found these when I first started this thread but better late then not at all eh?? lol
be able to catch up after company leaves I hope.

PEACE
BMW

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Tina,

((((((((((((((((((((((((Big Giant Hugs!))))))))))))))))))))))))))

Lily

Thank you for sharing as you did regarding your placement of the hardware; but more profoundly, I send you prayers and huge hugs regarding the passing of your Mom.

Caring for you Tina,
Mark56

I need to give a ring to lily and Cheryl both have been having issues with their pns..Lilly more so and I pray she is able to have that Doc adjust and fix the lead issues since he did NOT place them in the same spot as they were during the trial dang it Its your mistake doc fix it Please and let my dear pal get her life back. Cheryl once you adjust( yet again i know ) to the new med combo . i think youll be feeling and doing better. and yes keep away from those who are always complaing all the time about things it isnt good ya need to have and hear positive things!! Hugs you two
Talk to you both soon . Always in my positive thoughts.
PEACE
BMW

Easygoing
Thank You so much for helping my friend !
Such a comfort to have T.N sisters like you in our family
you keep hope alive You Rock!!!

both her and I send you a huge

PEACE
BMW

It has been far too long since I have checked in on you my friends, and even Cheryl, who lives here in our metro area. I owe her a touch base. So much water has passed under our bridge since last we shared posts.

On the positive side I am fully withdrawn from all pain management meds and handle the pain management solely with my stim, dialing it up and down as needed. Amazing what this little device will do. I call it God's miracle for all of us and feel especially grateful to have its benefit personally. Also, we learned from our Army son and daughter-in-law just recently that come end of August we will be grandparents for our first time ever! How about that?

I hope things are going well for you all, and want you to know you are kept close in my prayers though I have not been here writing.

Blessings,
Mark56

Mark I just got off phone with Cheryl she says hi to you and your wife and she will probably come post an update soon.

Was nice to chat with easygoing also... but sad to hear she has her plate full and maybe having to have another MVD due to being in auto accident and the Teflon may have been knocked off . Please keep her in your positive thoughts over the next few months as she gets everything sorted out and fixed. Her Stim is fine tho Thank Goodness. YES LISA YOU ARE FRAGILE!! even just tripping over the rug and falling can cause the leads or battery to move or migrate. So None of that okay. I am sooo glad the stim wasnt damaged in the accident . and you are fine.

Now if I can just catch up with Lily . I am starting to worry as I have called a few times and have not had luck being able to chat with her. but You are in my thoughts .. and I still care and hope things are going okay. If I dont hear from you soon I am gonna send my dog out to hunt ya down.

also Have 2 for sure new ones getting Stim for t.n. and another 3ed one pushing for approval and referral to get one... and I pray you do get approval. I am rooting for everyone of yous to have all things go well and be successful!
remember I ..we are here for you'all Just Reach and I / we will reach back.
PEACE
BMW...Tina

BIG HUGZ BMW to you for your work to reach out and keep the TN group huddled up! Thank you also for passing my howdy to Cheryl and hers to us. Think I will give her a call...

'Bye for now,
Mark56

Hi,
Time that I check in with you all. I have been using all my pain-free time to get ready for a vacation to Maui...YAY! I've never been there, and it is so great because my husband's last three years of vacation days were all spent for my surgeries. He so deserves this! And his AWESOME parents are paying for a week for us in a 5 star hotel. They are the best. We could never afford it ourselves.
Anyway, the leads.......he has still not repositioned the bad lead, and I have developed another problem, which I may or may not have told you all about - the line seems to be getting more and more taut. It feels like the unit is hanging, being held by a spot at the back of my ear. For those of you familiar with construction, it feels like I have a plumb-bob hanging from my head. And it saws away back there, like one of those wire cheese slicers. (Note to Self - never be the first on any procedure by your neurosurgeon). So.....they FINALLY scheduled the surgery - at first the neurosurgeon said that he wanted to do the lead move only, and then fix the hanging unit if the lead move was acceptable. So I wrote a very explicit email back to him about how painful the line problem was, and he finally backed off and said that he would do them together. I cannot understand why the hell he though that it should be two surgeries, especially because the hanging line does pull on my facial leads. I cannot even begin to tell you just how vexing all of that interraction was - he had me just crying with frustration. I want to be away from those people so badly. Enough is enough!!!
So, that is the update, and my surgery is 4 days after my return from Hawai'i, on the 21st of March. Please please please wish me luck that everything goes right. I'm so tired of this.
Hugs to all, at least half of my post was upbeat /
Lily