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

SO NICE to get email and to read your update here
I am sending a truck load of four leaf clovers a pair of magical lamps with 2 powerful genies inside , a double rainbow , fifty shooting stars, Chris Angel
(he does magic tricks ) , . . .I would send my lucky socks and my spider man tooth brush but I dont think you'd want to touch either of those lol.

For now Lily just relax don't think about anything but having a peaceful fun time on vaca. relish the adventure time you and hubby have . ENJOY you so very very much deserve it. and you deserve the fix it job soooooo soo much more.
I as you know have never stopped wishing,praying and hoping for you to get the lead fixed.. I know how horrible things are on those bad days and you have had more then your share.

so YES, a truck load of four leaf clovers, a pair of magical lamps with 2 powerful genies inside , a double rainbow , fifty shooting stars may all of these things bring you endless luck and a true honest to goodness successful surgery to fix the lead in March .
Thanks for the update.. I must call I need to hear your laugh try you Fri or Sat afternoon /early eve my time .
PEACE
BMW

Given your post and the difficulty in getting your neurosurgeon to understand the seesaw pain of the plumb bob at your ear, I TRULY understand your handle, LastNerve. It all falls into place. Sorry it cannot be resolved before your trip, but with all of those rainbows, genies, and wonderful rabbits feet style talisman figures, I cannot but think that all will be well. Gee, I would send you a pair of my "lucky" surgery socks [wore the same ones every time even though I always had a fresh plastic bag with still more of those little grabby feet things].

Even in your situation, taking time to just sit on the beach, maybe at Kaanapali, where we have stayed on the western flank of the island brings a wash of peaceful sound over you with each wave striking the beach. If you feel up to it in a five star [like we have stayed there] taking advantage of a spa massage can leave you feeling as though floating on a cloud. A drive, although a bit long, up Haleakala [sp?] the volcano on the eastern flank of the island will take you up to a view that astounds as you see the islands north and south, and then look down into the caldera.... what a sight.

What a blessing that your Husband's parents are sending you!! May God go with you and your time there be exceptionally peaceful, enjoyable and filled with beauty. Oh, and in our hotel the florist made leis from small orchids, so of course, I ordered them for both my wife and our daughter. They were thrilled..... hint, hint.

You will truly feel as though launched into an area of paradise as you enjoy your time there.

Blessings,
Mark56z

Oregon Health & Science University has coined yet another name for PENS or SCS. They call it Trigeminal Stimulation. It is great that they offer it.
Meanwhile, doctors are actually publishing results if you can figure out the name of their articles and papers such as "Neurostimulation for the Treatment of Intractable Facial Pain". Momentum on the treatments for TN are growing in the medical community. And, it is due to all the people on blogs like this because Google has included this NeuroTalk blog in their search engine - it's awesome. Just wanted to let you know some good news for a change. One minor downside is that really old treatment papers are showing up in the searches too so you have to be careful to check the dates of the pubs. A few neurosurgeon web sites are also showing these new treatments.

Lily this is Cheryl. I am thinking about you. Tina said you are having surgery on Monday. I am sure everything will be fine. My prayers will be with you.

Take care of yourself.

Love,
Cheryl

Lily, may all be well with you through and after the surgery, and may your healing proceed well and thoroughly such that you obtain hoped for relief!!

Cheryl, such a treasure to see you posting. I hope and pray all is well with you.

z
Mark56

Lily you sound in rough shape. I know it was a bad pain day today .It was nice to hear some of your tid -bits of your Hawaiian adventures . The tsunami warning during middle of night and the loud blaring alarm tho not fun at the time , I bet will stick out when you look back lol
Once again your heading for surgey .I think it was good to do both at same time. We are all sending positive wishes for this surgery to fix your PNS issues, be fully and completely successful ,

Please just force yourself and give yourself a good few weeks after to heal . Stay healthy . May the force be with you and the Doctor , his team thats assisting and last but not least your dh . Keep being the warrior and DO NOT feel any rush to post here. Heal and recoup first.. ..ya know the golden rule...
one step at a time. Adjust and heal from the fixing first. Just know we are all keeping you tight in our thoughts and are rooting for the outcome to be totally perfect in correcting the issues you have been forced to live and deal with ... (that is part that makes you a warrior )
rest up and stay healthy . May the best of the best find and never leave you by Monday Lily.
PEACE
BMW

Well put BMW! "that is the part that makes YOU A WARRIOR!" Beating back the pain monster!! Well put indeed!

Z
Mark56

Just want to give a very quick update on mylastnerve aka lily
she hasnt been doing so well at all after her surgery to fix the issues with her PNS. so far no improvement even tho the doc went in and adjusted/moved the lead. plus she is just getting over a bad sinus infection or cold or some kind of funk. She is to see her doc and rep tomorrow to try to program the unit better.
May things start tunning swiftly around towards the good.. towards the PNS working and to you Lily getting back into life and away from doctors and surgeries. I am so sorry things are not working but still hold hope that everythiong will change.
Oh yes I did sing you Happy Birthday on the phone a bit ago but I want to post a big Happy Birthday to you here.
Happy Birthday Lily
sending a giant huge wish that tomorrows doc visit really turns things around and the PNS starts helping.
big tight hugs to you.YOU WILL BE in my prayers thoughts and best wishes all the rest of this month and beyond!
keep being the warrior I have grown to know that you are. and know that we all care... just take your time with this and get to feeling better. but never forget that we are all carrying you in our thoughts!
PEACE
BMW

Just checking in...
Please bear with me, I am a little past tired, and have no patience right now. So I will keep this short, and please do not read it as anything having to do with any of you all.
Thanks Tina for the update above. This is hard times. The NS repositioned the lead AGAIN in a different place than promised, AND did not loosen the wire going down my neck. So I have been deep in the land of unhappy blue funk.
So, I sat with the rep, and we played with the settings. Good news. We are having good results regarding the lead at my nose - I am now able to wear glasses. I am still messing with it to see if it is helping any with pain. Not so sure. So, a bit of good news.
Bad news is, the wire to the unit is miserably tight. When I tilt my head slightly to the left, it lifts the scar, the unit, and the tissue around it, quite visibly. It pulls on the leads in my face. I was sitting waiting to speak to the NS's PA, and my SIL pointed out that I hold my head to the right. Tipped. I had not noticed it, but I had been having horrible neck spasms. Now it all makes sense. When I think about it and do hold my head straight up, it is taut. I mean like a guitar string. This was one of the things to be fixed at the last surgery - BUT THEY ONLY MADE IT WORSE. So before I saw the rep, I was thinking that I was 0 for 2 regarding results - hence the dark dark mood. I just couldn't talk to anyone.
SO.....BIG QUESTION....were any of you told that there would be a loop of extra wire put in? I had a feeling that he didn't do this. I convinced the PA to send me for an XRay, and there was NO LOOP - I had the techs show them to me.
I was told by others with these systems that this was done, so if you could all help me, were you told that there is a 1"-2" extra loop of wire put in?
I would be so grateful if others could share this info with me. Last bit of good news. I showed the PA what the wire was doing, and he shoe-horned me in for surgery 4/25/11 - next week. This is for a doctor w/ a 3 month waiting list. So I think now that they know it's really wrong. I pray so, at least.
Wish me well for Monday.
Lily