Hi everyone, yes Meeshacat is my sister and is here with me for the second procedure, she's coming in from the West Coast so it's harder for her with the time change.

Let's see, second procedure went better, no nausea, no headaches, just some pain and fatigue,,all to be expected. Having some TN pain because I had 6:30 show time so NPO after midnight, they also wanted no regular meds so I ended up missing 2 doses which I am paying for pain wise today.

I had come up earlier this week and the Doc's PA Erika is an artist when it comes to programing these things, so she had gotten two pretty good programs running and then of course, the surgery and now it's starting, not from square one but close!! Right after the surgery I was still feeling the affects of the pain med he used ( he believes no patient should be in pain unless no other choice) so my face was fairly numb and I couldn't even feel the stim working at times,,so I go back in later today and get a reprogram and since I'm heading to Dayton on Sunday they are willing to come in on Saturday if I need another tweaking. Great bunch of people up here,,no question the best hospital I have ever been to and I've been to some good ones!!

Today is harder than last time, very tired and having some clear discomfort from the surgical incision above the collar bone, the one behind my ear is minimal except when I wear glasses so I just pad it then. They even left enough hair so it's hardly noticeable, that's really nice. I do have to cover the incision on my chest because it seems to rub on whatever I wear. It looks ok,,not great, but I know after having been through enough surgeries that once it's healed enough I can start putting some Mederma patches on it and it will be hardly noticeable in a few months..vanity thy name is woman!!!

I think I've really learned that one of the biggest keys to this working properly is the programmer. She had one that has two leads working together to help with the pain in my mouth. One diode was going positive one negative all over the place between the two...it was fascinating. Don't misunderstand the Rep is great but Erika seems to just have a feel for this (or maybe more time,) So I am very hopeful that over the next few months between the Rep here and Erika and the Rep I will have to find in St. Louis I should have enough people helping change the programs as the swelling goes down and the scarring starts and the meds get reduced and the weather changes!!! that over enough time I will have enough coverage to really make a long term difference.

If they can find the same program that they had in my lower jaw line I can probably come off my Lyrica first, it made such an enormous difference in that Atypical pain I had in my jaw and gums, I was shocked. If that's all I get I 'm happy, if I get more, I'm thrilled.

Well have to go to see Erika for some more tweaking,,will let you know how it goes...love and thanks to you all and thanks for helping my sister out with this...it really made a big difference for her and helped a bunch...Thanks guys!

So happy to hear from you so happy no nausea or headache this time, I feel you on the battery by your collarbone it hurts no doubt, so glad you are there getting tweaking- Its hard when you travel to get the surgery and have that one person that works so well with your settings and then to start that process over once you return home, I totally get it, as you heal you are going to need more tweaking so please get the gal you like to get you set up with someone for when you get home, get that set up NOW while you are there, I went two weeks hunting someone down to adjust me and had to go through 2 different programmers before I found someone in my area that could even come close to the settings I got while in Chicago where my surgery was done, my pain was also atypical (neuropathic) so I can totally relate to the relief the stimulator gives you "as long as they get you good settings" I am so happy you have someone who gets you and can get you some good settings that thrills me to no end, (if she sets up the person for when you get home she will be able to communicate with your rep in your area the type of settings she used this will help you continue to get even better and better pain relief, so much changes as your surgery heals that the stimulator needs adjusted to go right along with that healing. Oh Beth I am so happy for you, I know what it feels like to get that relief and it is HEAVEN! Looking forward to hearing from you as you heal!

Heres my battery after visit back to surgeon on 12/19/2011 I have a St Jude Unit!

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Here I am on New Years Eve! about 4 weeks post op I am the one in the middle with the bandage on my chest LOL - Hope this encourages you!!!!!!!

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So Kat... ya gonna name it ??
Beth one day at a time sending healing wishes and speedy recovery. once things heal and you and the rep work the programs and tweak when needed I am sure you are going to find the PNS helping more and more. Thas what I am praying for.
PEACE
BMW and T-Rex

BMW-t-rex I hope you are feeling better, we keep praying for Beth and her sis, for sure and yessssss, I am going to name it..... Im naming mine FOOTLOOSE! BAHAHAHAHAHA I think you know why!

You are funny Kat !!Love the name!!!!!

They taped you up!! I got glued, on both incisions, so no having to come back in to get anything removed...what a blessing. When I had my MVD no one would listen that I heal quickly so after 10 days they were digging stitches out no issue with that this time....they listened to me.!!
I keep hearing that health care is broken but this is a non profit that seems to make it all come together.

Here's a great one too, there is a system that my pain mgmt Doc and my PCM can log into the computer system here and see all my records. No mailing, no faxing, just ready at their need. They not only get all my Doc's notes but Erika's as well but all the films so they can see the trial placement of the leads and the permanent ones as well.
I also talked to Erika who gave me a print out (and will every time we change it) of the programming she's used during the trial, what I have now (which is very mild due to pain and swelling) and what she will change next time I'm in, so the Rep in St.Louis who has probably never seen one in the face, doesn't screw anything up because of inexperience. It is so refreshing to be dealing with the medical community that is more concerned about patient care than who get's credit for it....

They do a bunch of these very day as well, I got to talking to the pre op nurses who said they do a bunch of these every week, not just simulators but in the face stims...that gives you an idea at how viable this procedure is becoming...this could hold real answers for so many people with facial pain issues...let's keep hoping.

I will have my husband post some photos from the trial and then from the permanent procedure, so we can compare notes. I'm feeling better today, still very tired, overdid it yesterday. Will have to be careful today since there are some things I really want to do today like go back to this great outdoor/indoor market that has fresh breads and meats and gyros that were shown on the show "man vs food" they were killer!! We promised my sister that we would take her over there today. I also want to pick up some pastries as some Thank You gifts for some friends in Dayton.

This says a lot right there, these are things that I used to do all the time but had let slip over the years because the TN had taken over so much of my life, even just the minor relief I'm getting is giving me the hope of some kind of future, that indeed says a lot.

I'll get those photos up today and will keep everyone posted as I progress through this process. You have all been wonderful not just for me (because I know what a warm caring group of people TN patients are) but for my sister as well. Your input and warmly reaching out to her has made this process so much less frightening and you all really made her feel like her being a part of this and the more she knew the less afraid and the more hopeful she has been. I can't thank you enough, it has made this so much easier for her,,,I will always be grateful for everything you've all done for her.....

Love to you all, will keep you posted as things go....

Beth I am so glad to hear things are healing and that you have such an awesome "team" at your helm sorta speak. That is so important. Dont over do it. take it a little bit at a time take breaks and naps. You are still healing and things need to scar over . But enjoy the relief! It should only get better day by day. Also we are a family all of us in the forum here and are more then happy to help and support your sis. She is an angel
I say you are all lucky
My pictures are back on the very top of page 21 on this thread.
I had staples where battery was and also where the wire went up back of neck only had glue and stitches where lead went.
This year will be ten years for me or T-Rex will be ten this July.
I AM SO PLEASED to see the advancement and also that it is FINALLY being more accepted and used .
May everyone ( even those on the side lines ) have a low pain fun weekend.
PEACE
BMW

We still have you in our prayers and positive thoughts Beth. I know you are busy getting used to the PNS and probably are going threw the ups and downs of working the programs and hope that when you have apt with rep for tweaking things get better and better each time. I sent a email to your sis to pass to you..just know that anytime now or later I am around kkk, continuing to send prayers positive thoughts, strength to you and your family .
If anyone for that matter wants to contact me for support or info to do with T.N. and or the PNS may reach me at versetmb@yahoo.com please put t.n. or neurotalk in the subject line.

Kwebster it is good to see you slowly getting back into life and also you and new rep smoothing out the kinks more and more with the settings and such... plus your getting a new paddle that will help cut on the frustration. well I guess ..I dont have to recharge so I am up the creek without a paddle lols.
Am leaving wishes for all to have a low pain stress free weekend .
PEACE
BMW... Tina