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all in chronological order beautifully reminded wow it is probably the same in all but i do remember the papers being signed by me have no copy without my glasses when i was ready to be taken in the or thanks for the memories first surgery i heard my butcher say while so called under "look at this mess" that he did someone who cares |
Yup - Mark's back!
As usual, brother Mark, you have quite a way of really touching the hearts of those you write to. You truly have a spiritual gift there. Thanks so much for sharing that gift with the rest of us out here.
I had quite the opposite experience with my implant procedure. I was way to AWAKE for the entire process up to the surgeon actually cutting me open to tie-down the probes and implant the buzzer. I was quite miffed about it then and still am. There was no reason for me to be that alert during that nightmare. I have very vivid memories of her 'sticking me', then inserting one probe and sending it up my spine...then the other. "Take a deep breath, Andy" ... Yeah, I'll give you a "deep breath" ... how about I give the anestheologist a right hook! No, I don't think I signed anything that I will regret later...but I am wondering what will happen if this thing proves defective. Another surgery - who pays for it? Surely they won't expect my insurance to pick that all up - and I'm sure not going to! I would think Medtronic would have to eat that one but...I don't know. This whole thing is so new to me. I'm not looking forward to the upcoming battles...and I know I shouldn't concern myself with the 'what-if's' and things I don't have control over nor do I even know what's really going to happen. It's just not fun to contemplate so ... I'll think about whatever is true whatever is honorable whatever is right whatever is pure whatever is lovely whatever is of good repute and if there is any excellence and anything worthy of praise.... these things are what I will endevor to allow into my mind. (For anyone wondering that was the NAV (New Andy Version) of Philippians 4:8) |
Wulllll Andy
May I send off for one of those NAV to go with my Study version? I feel as though you paraphrased quite well!!! Yes, I strive to live in the Word, for it brings solace to know we are always accompanied, even when we are without the presence of others of our brothers and sisters.
Life toils are so often troublesome. Goodness, all one must do is casually peruse the pages of this particular thread to arrive at the realization God created some VERY tough people here who live through things one would usually pick up with a pooper scooper. It is interesting, for at work I am variously referred to as the Lion or the Bear or a Comforter..... depends upon the need, but when Righteous Indignation and Battle are called up, the Lord showed us in the Temple how one deals with "moneychangers" or with David how one steps up to a Goliath. Sure, any one of we who are minnows alone are but protein a whale may strain through its baleen, but together the whole of us could just as easily choke that whale. Think for a moment..... I have groused and groused about political folk who secure an elected post in D.C. and vote raises, guaranteed retirement after a single term of office, oh, and my favorite- exemption from the so called health care reform. Together we could all throw off the yoke of oppression with our votes if we would but awaken as Japan realized after Pearl was bombed. We take awful circumstance, and if for the sake of our health, our family finances, the well being of others as with you, we seek a class action counsel so as to choke the proverbial whale. This is the maneuver for redress when numbers of people are provided mal-ware-widgets and one need not die in a pinto fire to have redress. Advice thus sought can provide answers to the questions am I at risk of having to pay to fix the problem? Will the provider/manufacturer take care of this? What is next? I cannot advise what is best here, only deliver generalities with pointers to professionals who may opine regarding specific situations. As for me, when I have needed legal help I went and secured it so those responsible would ultimately pay, and they did...... Christ never told me I had more than two cheeks when it came to turning.... Yup, Mark56:grouphug: |
Re: Prayers on Target as Requested
Thanks, brother!
Long visit this morning. Jason (Rep) is 99% positive it's not a defective PGen...said so more than once. "There's a 1% chance it's bad". He then goes on to give this explanation of how he talked to his coworkers, one of which has 20 years in the field, and said, 'No one has seen anything like what you have going on'. I'm not sure how this was supposed to help but I told him, "As a technician, Jason, all that does is tell me I got the one out of a million bad PGen's. Now if you had told me your coworker has seen it a dozen times and 'this' is what he did to fix it, then I'd agree with your assessment that it's probably not bad." Doc walked in and he rehersed the entire conversation to her. I told her the same thing - if he's never seen it before that tells me (etc) and she nodded her head. Having said that Jason also said, "We have a lot we can do with this thing to narrow down what's going on" and he removed ActiveStim, added the ability for me to control both the width of the pulse (he said they don't do that unless they feel the patient is technical enough to handle all those settings - not bragging, just letting you know I have a L O T of work to do) and he wants me to start ramping up one program, by itself, document what it's doing (the stuttering), mess with the pulse-width, amplitude (etc) and see what it's doing....then move on to the next, and the next (a total of EIGHT programs, each one with multiple variables to work with and document....) I got my work cut out for me. So far it's doing exactly what I knew it would...stuttering whether the width is set to 'comfortable' for me (450) or if I turn it all the way to minimum (210) - the stuttering continues. Now, back to my doctor: She said, "Give me a week...I'm going to write to my guru's and ask them if they've ever seen this. These 6 guys are my go-to folks when I have a question." I thanked her profusely. She's really something and seems to really "get" what's going on with me. She knew I hadn't had this during trial. She remembered I had this problem right at post-op with the implant. I think if I were to point-blank ask her, she would agree she suspects the PGen is bad. Onward and upward...one day, the 'upward' will be a reality... Thanks for caring so much - EVERYONE. While I don't look forward to all the 'fuss' I have to go through it's not all that bad, really. Yes, I'm having to endure more pain than I was with Trial because, bottom line, this thing isn't working as well as it's supposed to! |
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and who better than you to tell them about what you feel on the inside i Love it that you took CHARGE of your body and convictions YOU GO someone who care |
Grrrrrr......
Ugghhh....how frustrating this must be for you, Andy! I sure hope you or your doc can find a resolution to your stuttering SCS very soon! Hopefully it can be fixed and you can get back to that wonderful level of pain relief that you experienced previously!!
Meanwhile, I'll keep praying for you! Hugs, Jan :hug: |
Andy.....andy.....andy.....andy!!!!
Can you hear those CHEERS from the sidelines and the stands brother???? They are for YOU!!!!
Run that ball all of the way to the goal line!!!!!! Then SLAM it!! You know the real deal. You argued your way into programming. I understand from my doc I was the first on planet earth to be allowed to program myself [so he invited me to write an article for a medical journal he is still trying with a collaborative doc friend to publish] and it does work, that is if the unit is worth the material out of which it was fabricated. This thing has never stuttered ONE FLICK, never hesitated ONE MOMENT, never BURPED!! Play it hard and play it long as you know you can until you wring the best out of it. Document, document, document...... WHY????? Because that documentation becomes called Evidence in the proper circles. MAYBE, just MAYBE even after all of your hard labor on this you will discover programs which actually work for you! If you do discover them, you will have achieved that which Coral Toe and I have come to know for real in our own bodies, and God will have smiled upon you with GRACE. It is a blessing your rep was willing to listen. You are so absolutely correct, if the unit does not work, your rep will have become the expert witness, albeit an adverse witness, who can tell the story you ARE the 1%. If you are ultimately delivered from this misery which brings tears to the caring eyes of your wife, you will have achieved an wondrous end game. The rep listened. That is good. You are in the pilot's seat, and as one who has sat in the co-pilot seat at 41,000 feet, I know that is one great space to occupy. YOUR DOC??????? IS IT POSSIBLE she is related to my pain management doc? I mean, their demeanor is so so similar! Taking the case to her gurus, a great thought. A great admission. A demonstration of true compassion for the patient. Brother, I am praying you through this, and if you need any more cheering, thoughts, stuff....... I am here, and you have my PM, my number, my willingness to do anything to help with the stuttering which could drive one MAD [not angry.... mad with unrelenting pain topped with the crazy making pulsations]. I guess I had better shut up now, before I become a babbling brook, Praying for ya, Mark56:hug: |
"Babbling..."??
You just keep right on babbling, my friend! Your "babbling" really brings a smile to those that you write to AND to anyone else reading your interaction with everyone. You're one, caring, TRUE, friend...and there are several others out here that I would absolutely say the exact same thing about...thank you ALL of you.
You're right, Mark, obviously while I'm in all this "documenting" mode I'm also dealing with increased leg-pain because the programs that work the best for me are set by the wayside while I run up and down the gammet of the other ones. Jason called he late this afternoon and informed me he really wants me to test every single program even those that don't work with the pain area. He wants to know if the stuttering affects all programs, both leads. Okay, fine .. except for one, minor problem (NOT minor!): Two of the "B" program set affect my lungs/chest! I don't think so...I have enough trouble with asthma - I don't need a stim messing with the muscles that affect my breathing! I have a feeling another visit with another set of programs will be added. I can assure you, he hasn't let me touch that master programmer yet. All he did was add some additional capabilities to the patient-programmer device. A programmer, I am not - I wish I were. I'm struggling right now @ work with some PowerShell scripts and am pretty lost! They gave me rights to our Print Server and I need to .... sorry, that's WAY off topic! Maybe I'll TM you or even give you a call sometime. BTW, don't hold your breath for that one....I despise the phone! I blame it on being a help desk tech 15+ years ago but ... alas, I think it's just my stupid pride! Anyway, I appreciate everyone's prayers and also want to assure each of you that I pray for you as well. Each person must carry his/her own burden BUT we are also commanded to help each other with that burden. Is that a contradiction? Nope - there's room for both and in this forum we're all about the 'helping each other' portion of that. :grouphug: :grouphug::grouphug: to all! |
Checkin in.....
It's been a few days, Andy, and I'm just wondrin how you're doing?
This seems to be a pretty sticky situation and I'm sure prayin that it will all turn out to be something of an easy fix. All I do know is that Medtronic BETTER see this thru and do whatever it takes to get you up to par, and 'eat' whatever extra cost this may or may not involve. You hit the nail on the head up yonder when you said that these units need to be tested and REtested BEFORE they go into a human body. Good Lord! Yep, I'm prayin 4 ya, Rae :grouphug: |
Thanks, all
I've been extremely busy these past few days and, quite honestly, a little bit 'down', I guess. I am continuing to read the posts out here and pray for each one as I read them, but as you noted, I've been a bit absent. Mark, I did get your TM tonight - thank you. We are really in 'crunch-time' with my two sisters coming down from Michigan to visit in about a week or so. My poor beloved bride has so much on her shoulders with me being so limited. :(
Latest with the stim unit is - I have identified two of the 8 programs where it does NOT stutter. I don't know what this means but have an appointment tomorrow afternoon at 4:00 with the Rep and doctor. I am fairly certain an X-Ray will be shot to see if the probe (s) have migrated, which I highly suspect. My prayer is that even if it has migrated that we'll be able to 'program around' the migration and, thus, avoid another placement surgery. As for the P-Gen - I am pretty convinced it's defective and wait to see what Jason says about the 2 programs that don't stutter and find out what's next. Again, I appreciate each of you! It sure helps to talk with others that are going through similiar circumstances. I do have my church-family and they're wonderful but there's something extra-special about having others that are familiar with this technology and the nuances of it. Get this, folks, I got a statement from the hospital with the total charges. Good grief, the hardware alone was a couple bucks shy of $80,000!! It sure BETTER work and it should be made out of pure gold! Total surgery cost - just under $98k. Good grief, I think I'm in the wrong career field! |
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