Well, made it to Cleveland safely and was managing the pain until I hit Cleveland and the weather had turned sour. Cold, windy and looking for snow....my luck.

Here's what I know after talking to the nurse. The unit is a medtronics and I think I will be able to follow up at home with a rep in st.louis. I am lucky to have some flexibility in my schedule. The test unit goes in on Thursday and we will most likely head to Dayton for the weekend, next week I can come back up whenever to have it reprogrammed. Next Thursday the permanent unit goes in and I will be staying at the hotel in the hospital for a few days in case I need any help or I need to see the rep. again. That's the tentative schedule,,we will see how it really goes!!! Getting any help over the weekend is difficult so that's why we are not staying up here the entire week, that and I don't really want to "live" in a hotel for two weeks!!

I have another question, how much hair did they shave off and exactly where? when they did the trial where exactly di they have the wires ? what exactly was implanted at that point and with the permanent unit can you feel any of the wires? Also, how do you know when you need to have it reprogrammed?? Does it stop working well ?

Well, I think that's it for now, I've probably forgotten to ask you something really important but what ever I'll figure it out over the next few days..... I'll let you know on Thursday or Friday how it went.
Thanks again for all your help and support, you really gave me great questions to ask and things to know ahead of time. you've been great Beth

well the night before surgery... I have you in my thoughts and praying for the pns to be most helpful in reducing the pain and for all aspects of both surgeries and healing also the programming to be smooth .
my T-Rex is medtronics
as far as where and how much hair each of us is different cus of where the leads will be. I know for Kathy she didnt have any shaven or cut off. I had a small tiny patch by my right ear. you could not tell at all cus of my long hair. you will most likely have your wire coming out and taped by your ear but I AM NOT sure . you really dont feel the wire all they are doing is putting the lead in your face by the nerve that is all that will be inside for your trail. the wire will come out by ear I am guessing and be taped to your head the connection battery unit will be outside it is a battery pack you will tote around the wire runs from that pack and connect to the leads where the tape is . once you have the final they put the battery and the wires under your skin. YOU WILL NOT feel or be able to see them. you may be able to see a small bump where the lead is depending on where it is placed. but after the final no wire should be exposed. LOL RIGHT KATHY
you will know it needs adjusting or programming because it will not help as it did a few days ago or it will be hard for you to program in a good setting so you meet with a rep and they adjust the programming most call it getting programmed. I do not have any of that new high tech options . I really hope very badly that your trial and final go really really good. PLEASE keep us posted and know there are a big bunch of us praying and wishing all this is sucessful for you Beth. yeah there is more folks on the side lines rooting for you then you think we are here for you . Have a very safe trip and successful outcome/ endings with both trial and the final implant surgery. God speed.
PEACE
BMW
p.s. TAKE LONG SHOWER You WILL NOT be able to wash hair and stuff so enjoy it one last time!!!!!!!!
BMW

So glad you mad e it to Cleveland, I remember getting to Chicago 5 hrs north for me and it was soooo cold, tomorrow you will get your trial, I so hope you get this message, relax, breathe, and you shouldnt be shaved anywhere tomorrow, I wasnt during trial, as everything is basically left outside your body to see if it works, things are different with the final implant and we will get you through that so just for now think about the trial, when I woke up from trial in the recovery room the St Jude Rep was beside my bed and started working on my programs, I had immediate relief once we got settings to my liking, so make sure you are getting relief where your pain is, so they can work on the leads to get you where you are happy, best advice is be patient as they program it, I got a little scared when they first starting adjusting it and it was so weird getting used to that feeling but once they found what I call my "happy" settings all was good! Will be thinking of you and saying prayers that this will be a success, ( not fun to carry the battery pack around for that week but the week goes fast) just take it one day at a time and we are here for you in anyway- I also posted my email in earlier post feel free to email anytime. Again we will all be praying and thinking of you.
Kathy

Well, I just spent 40 minutes writing everyone and letting you know that I'm doing fine and I feel really confidant about this Doc and the entire process so far,,made a few good jokes, mentioned the great hair stuff they brought back, it's like clean hair in a can...the whole bit and the hotel internet ate it.
Gone, vanished, lost in cyberspace. Anyway, I really am ok and I will write more tonight or tomorrow. Let's just say that I met with the Doc and he answered all my questions and then a few. I saw the unit, the rep will be there to set up a few programs to start. I can come back up whenever I need to if I need a new program next week. I have the arrangements made to meet with a rep when I get home through my pain mgmt office. It's all ready. I don't have huge hopes, if I can get 50% pain reduction I'm thrilled. This Doc is confidant of a good outcome so I'm hopeful but no guarantees.

Great job- and thanks for updating us- you sound prepared and ready and I am believing the surgeon wouldnt have said you were a good candidate if you werent soI cant wait to hear your great results, got a feeling you are going to be so excited with your new stim! You certainly have yourself prepared and sounding very positive, so proud of you so Good Luck-God speed to the surgeon, and the rep that will work on your stim-
Yours,
Kathy

I cant wait to hear your update. We are sending good positive energy and thoughts to you. PNS it isnt that big of a surgery really unless it is your first surgery of any kind . so I know your are going to be fine and would bet your first impression of the stim is gonna be good.Ya will get tired of lugging the battery pack around .. .
Many prayers and good wishes for A smooth trail run with much lower pain via the PNS . Stay tough and get your rest.. You will most likely need to find different sleeping position . . so get comfy and rest THEN after when you feel up to it check in.
PEACE
Tina

So, I've had 12 million surgeries and this is the first time that I have had a bad reaction! I woke up today with a violent headache and severe nausea. What a bummer. The procedure itself was minimal, some pain but nothing to be bothered by. The Rep was there as I woke up, she set some programs just to get me started and I had to drag my butt out of bed to meet with the Doc's PA today and she set another one that seems to work much better. I'm not sure how she programmed it but it really helps to cover the pain that I have on the roof of my mouth and in my tooth, so that's an enormous relief.

We decided to stay up here another night since the weather decided to turn foul and we are getting snow and sleet!! So we will head down to Dayton tomorrow and spend a few days relaxing, then next week we'll come back up here to maybe get another "tweaking" to my program and the final unit goes in on Thursday.

I have little doubt about putting in the permanent unit, I have not had a serious jolt of pain since they turned it on, a few minor ones but nothing bad. if this is as good as it gets I'm happy....my husband noticed that I actually smiled, something I haven't done in such a long time....I guess that says it all.....

So as long as I can convince them to use something different to knock me out then I can't see any reason not to do it. If I'm stuck with the same stuff then I will have to be prepared for it. I think this is a very viable option for controlling TN pain. I have some photos that I will try and post if I can figure out how to do it!!! Will have to repost to do it, love to you all and thanks for all your support...will keep you posted as the process continues......

Awesome news on the "smile" Beth, thanks for posting sorry bout the nausea,and headache, same for me so second trip I had them give me something for nausea in recovery room and then I got a script for "Phenergan Liquid" which I needed on the night of 2nd surgery helped me alot check with doctor and see if you can take this, just a suggestion, when I am nauseated I find it hard to swallow pills so I asked for the liquid version and it helped me to just sip on it, it is for nausea it has some codeine in it I believe so it also helped me rest, just one more thing to add to your list but hopefully it will help solve that issue the next surgery - it certainly worked for me. Healing thoughts to you, keeping you in our thoughts, prayers hoping for a better day for you tomorrow
Kathy

I am so sorry you got sick after . The feedback of your trial seems to be good so far and I pray that each day the PNS and program's grow stronger and more beneficial for you lowering and controlling the pain. I am sending healing thoughts ,protection ,strength and serenity to you. I hope today has you feeling a zillion times better.Try to eat and rest. Thanks so much for the update and we hope you can feel our thoughts and prayers.
PEACE
Tina