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SCS, Tell me it's not just me!

WramblerWWrambler Posts: 1,588
edited 06/11/2012 - 8:28 AM in Depression and Coping
Please can someone else chime in and let me know I'm not the only one that FREAKS out when they get something in the mail? I received confirmation in the mail from my insurance carrier today. It lists all the fun stuff, you know cervical disc desease with myleopathy etc,. I knew it was there, knew it needed to be written down to be approved for the SCS. So I KNOW all this stuff. Yet, seeing it in writting just has me about half freaked out. I have waited for the SCS trial to be approved. Now it has! Yet all I think now is about having wires pushed up along my spine, what if it doesn't work. What if it does? How do I return to normal life now? I have been limited in all aspects of my life for over 2.5 years, what will it take to get back to "norma"? after passing the Psych eval for the SCS I now find myself afraid to even ask for help with any of this! What If they realize I am nuts AND CHANGE THEIR MINDS?
I have dealt with depression, meds, shrinks and doctors about this type stuff for 15+ years, long before my accident. I know all the stuff that I need to do. Yet still have to ask. AM I alone in being smart enough to know what is going on, yet not quite smart enough to calm down about it? :SS ~X(


  • You'd be nuts NOT to worry about some of this stuff.

    I hope you find it helps you - just think how it could transform your life! Being prpared, asking questions, resarching it is the best thing you can do.

    I can't remember who said "if you aren't worried, you've under-estimated the problem" and it certainly pays to be cautious. But with some optimism too - this could be the thing which gets you some of your life back.

    Cautious, informed optimism with realistic expectations is probably the way forward, at least for those of you still with options to try.
  • Hi Wrambler,
    You are so NOT alone. This is an emotional rollercoaster that is one thing I know for sure. Sometimes I think to myself "I got this, you go girl" and then the next I just want to curl up in the fetal position and cry and scream. I just wish I could get off this ride but darn it, I don't see this happening anytime soon or ever for that matter. Trust me, we all think we are nuts sometimes but WE ARE NOT NUTS!!!!! Going through what we go through is a challenge bigger than anything I know so give yourself credit. I had my SCS implanted on 1/16 so if you have any questions please feel free to ask.
  • Whenever you said "What If they realize I am nuts AND CHANGE THEIR MINDS?"

    How many of us must think that at times???

    I think it's the people who DON'T think they are a little 'off' that are the real problem.Most of us..we know that we are human,and can be a little nuts from time to time-that's normal...lol.

    Seeing what we already know in writing-someone ELSES writing-can be a shock.That's generally when reality sets in.I think that when you give yourself a little time now to really accept this as fact,that you will see-you're going to be ok.Like life,change is inevitable..and sometimes scary.

    Good luck with your SCS.I'll be anxious to hear all about it :)))
  • At least somewhat. My shoulder is fired up for some reason.
    Makes me remember why they mailed out that letter!

    Thanks for all the comments.
  • It makes no sense to start a new topic, so I'll just grumble here. I am really miserable right now. Pain is running in the 8-9 range. Lortab all day long etc, Figures. Do you think the non thinking parts know when the thinking part has scheduled something that may cancel them out so they panic :))) My shoulder started ramping up on Saturday and has gotten worse each day since. My wife wants to wonder why? Me I give up as I said it makes no sense at all! If I could just curl up in my chair and wait this out I gladly would. Nope, got to keep coming into work. Then try to think through a viel of Lortab and not let anyone know how darn near impossible it is to connect thoughts I don't want to connect! writing stuff like this is easy. Trying to fill in the blanks on an excel sheet SUCKS! I don't have enough sick time to take off till the SCS trial. If I did I would be afraid to use it :S Human Resources sent me a letter in November telling me the following week they would be reviewing my case as I should not be working under restrictions. Uhm, they never got back to me :O
    If I remind them I will likely be sent home till we find a remedy for what ails me and somedays I'm all for that. Hey, most days I'm for that anymore! Still I keep thinking if I get this straightened out before they catch it I can keep working. My supervisor and his boss both know about it too! So, since these people all have placed their faith in me I keep coming in.
    I guess I'm just generally grumbling till the next 3 weeks pass. I hope this SCS works for me. If not, I'll be following the path of so many others in looking for disability or a new job =((
  • Wrambler,
    Please feel free to grumble all you like. You have earned it. I know how hard the waiting game is - especially for someone like me that is not an overly patient person to begin with - LOL. My last visit to a doctor was on 2/10 and that was a consult with the surgeon who will be doing my trial. I recall him asking me when I wanted to do the trial and asked him "is today too soon"? He truly understood what I had been going through. When he left the room to go schedule the appt for the trial I have to admit I was a little deflated when he came back in and asked about the 24th as a start date for the trial. He explained that he would not be in the office this week as his son was returning home from Iraq and he wanted to spend time with him. The first thing to come out of my "big" mouth was - "thank him for helping preserve my freedom" and then the second thing was - "if you had given me any other excuse as to why I have to wait 2 more weeks I dont think I would have accepted it". He again laughed as he understood what I had been through leading up to this point.
    Like you I was concerned that they would find a reason to tell me I was "crazy" as I have a history of panic anxiety disorder and depression. Of course I know I am not crazy but sometimes I still feel as if I am. I have started counting down the days to the start of my trial - hoping that it will lead me to more of a normal life. (Is there really such a thing as normal?)
    One concern I have though is the fact that you are still on pain meds. They have weined me off of all my pain meds. The strongest thing I can take is Tylenol............as if that does anything. My younger sister had the SCS implant a few years ago and they did not wein her off her meds - they stopped her cold turkey and she went through HORRIFIC withdrawls. The dry heaves were so violent that it actually pulled her leads loose. So if no one has talked to you about it you may want to call your doc and ask some questions. I was also told that I needed to be off all my pain meds to get a good quality result of the trial. It certainly sounds reasonable (especially after what my sister went through). The pain meds she was taking during the trial were the reason she and the doctors actually decided the SCS worked and chose to implant the permanent one.
    Doctors have been recommending the SCS for me for 2 years and W/C just kept sending me to different docs only to have the same things done repeatedly. And my younger sis has been trying to "talk me out of it" for just as long. My thoughts are "just because it didn't work for you doesn't mean it won't work for me. My injury and situation are different than hers and I truly believe the pain meds were a factor for her - one which has been eliminated for me.
    So all in all - YES THE WAITING GAME SUCKS..................especially when you are in incredible pain.
    I recent received a text message on my phone that made me laugh hysterically but at the same time made sooooooooooo much sense. It read simply: LIFE IS A BITCH - IF IT WERE EASY IT WOULD BE A SLUT.
    I hope your pain is a little better now. Keep in touch and keep right on grumbling if that is what you choose. Feel free to PM me anytime.
  • Hi wrambler

    Hugs Grumble Hugs Grumble >:D< We all gotta do what we gotta do to get by and cope! Heaven knows i need my daily moan lol. I can't work with all this... so hats off to you for struggling through... and YES excel sheets SUCK! had to laugh! (or cry) prefer laughter... hang in there!
    L4-L5 fusion 1998; ACDF C4-6 2008; DDD
  • I know about the pain meds thing. One PM told me I had to wean off. This one said nothing about it all and I asked what I needed to do to prepare. I guess I'll have to check on it and try to figure out what I need to do.
    I have seen it both ways. Seems logical from both sides. One said says no sense in hurting yourself until the trial in case it does not work. same thing as if it does not work you're right back at square one. The other side says no pain meds at all. I'll have to sort this out.
    No time like the present to be more miserable then I allready am!
    Gee, thanks for reminding me...
    Just sat and looked for info. The need to stop the pain meds seems to be doctor and level of use related. I am not going to worry to much about it. I got enough issues without pulling my hair out and with only 3 weeks to the trial I don't know that I can comfortably get completely clear of the Lortab anyway.
    I will call and discuss this with my doctors.
  • Wrambler,
    It seems no matter what we do we are always going in circles. I think you may well be right on the pain med issue........it seems each doctor has their own way of doing things. I hope I did not add to your stress level with my earlier post. I am always reading and trying to find out as much as I can about what to expect, how things are supposed to go etc. I drive myself nuts with it at times. And like you I freak myself out. Thankfully, I have found this site and am able to vent. And like you, I worry about the "what if's". I know I am almost out of options if this doesnt work and quite frankly that scares the pee out of me. I have no desire to spend the rest of my life on meds but I am also willing to except it. I am counting down the days until my trial............1 more week. Wooooooo Hoooooooooo.
    I'm here if you need me - just send a PM.
  • I'm going to post what the locals told me over in the treatment section.
    As for adding to stress. to late for that. I will be very surprised if I make it without a nice warm fuzzy panic attack or two or three... I'm going slightly off the deep end.
    On Saturday my shoulder started hurting worse and it increased Sunday and little yesterday. Now it has leveled off to barely tolerable. I expect it is weather and tolerance related, I have been taking Lortab for a while again now. I don't want to go to the next step, specially with the trial coming up. I got to cross my fingers and pray the next three weeks passes quickly and the trial is my personal answer.
    I know what would help, but again have to make a call and beg for valium, or xanax etc, It's been a couple of years since I needed those. I do know they help with pain some and sleep, so I am considering that option. But, again, I don't want to toss any red flags up in the air at this point.
    I love this situation, when the pain is bad it walks on my thought processes, such as they are anyway. I forget everything. Today I got half way in and realized, no work cell phone. Had to go all the way cross town and get it. Then I had run low on gas so I had to get gas. Made me an hour late for work, so, no lunch today. Yay!
    Yepper this is a fun time... <:P
  • Sounds like you are having one of those days ( ~X( ) and I can't blame you. I think my brain was fried with meds a long time ago. With a week to go before my trial the pain is getting intolerable and with some hesitation I called the doc and am awaiting a call back to ask for something to help me get through the sleepless nights due to the pain. (|: I am very thankful that I am not working when I have nights like the last 2 or 3 that I have experienced. And for those of you who are still forced to work despite the pain my heart goes out to you >:D<
    I get the feeling you are pretty frustrated and understandably so...............but at the same time I sense a bit of humor in your post. Have a GREAT REST OF THE DAY AND KEEP THINKING HAPPY THOUGHTS..........I know easier said than done.

  • Yeah, got to keep humor or I will lose it! The best time I have had in days was watching South Park and Futurama with my 16 year old =)) The South Park was the one where they picked on Poke'mon, hilarious or as I like to say HI-LARRY-US!
    There is nothing that helps more than totally brainless stupid humor!
    I usually skip those shows as my wide hates them, but last night I needed the entertainment value! :))(
  • Wrambler,
    Yes sometimes humor is a necessity to get us through some of the tough times. For me it is King of the Hill and the Simpsons.
    I heard back from the doc this morning and they offered me more opiates..........told them no just wanted something to knock me out!!!!! So he gave me a week supply of Ambien. Also found out something new today as well. It seems the surgeon forgot to write a scropt that I needed for an anti-biotic. So when they called in the sleeping pill they also called that in as well. If they have not said anything to you about it - you may want to check on it before your trial.
    Hope you are having a great day.
  • Jacque

    I did not take any anti-biotics prior to the trial or implant. The doc used some specialized anti-biotic prep that was like a "bed" or "coating" for my back. I heard him explaining it to the rep and another doc while it was being applied. I did take anti-biotics post op with the implant.

    Glad the doc is helping you with some sleep.

  • Are they really making you wean off meds before having just a trial? It sounds crazy, I didn't have to when I tried mine out and am glad that didn't happen because things went sour during the trial. I need to laugh as well and we watch the Simpsons, Family Guy, and Scrubs with our teens.
  • No weaning off! They said I was fine, they only taper people on patches and high dose stuff down to oral meds such as Lortab or Percocet before the trials. They don't force people to do withdrawals etc, then only find out that the SCS does not work for them. They just want to be sure the patient is not on so much pain med that it clouds the trial so they can't tell what is going on.
    No antibiotic either, it was not mentioned and they mailed me a script for blood work. I am going to assume they have got it covered as I allready called once. I'll be waiving that red flag if I keep calling :)
    I expect if I have another morning like today and yesterday I will surrender and call my psych. I know a simple Valium would do the trick as far as keeping me from feeling like I am about to freak out all day long :( I hate to resort to that. But I can't spend the next three weeks like this :SS or I'll be 8}
  • Anybody got any Marshmallows? I got that lovely campfire burning between my shoulder blades again this afternoon!
    woo, hoo. S'mores anyone? Course you'll have to come over and do the roasting. I can't hold a stick to get them back ther =)) e
  • I'm finally starting to calm down about all this waiting stuff. Trying to work on thinking positively about the SCS coming up. I can almost sleep again! I just keep telling myself this will work! I guess the flip side is to not get so wrapped up in it that if it fails I crash and burn :?
    Just trying to find my happy place :D I know it is around here somewhere :O) Waiting for the shoe to drop as I'm pretty sure my wife is about to freak [( out because I have not been helping out around the house. I have told her I was not doing well, pain wise and mentally so perhaps she will hold off :T till we get past this. Sometimes she forgets this hurts and why I am doing all this.

    Sure is nice to not be riding that anxiety roller coaster again today 8}
  • ..especailly when you are going through a NEW treatment.Wanting,hoping against hope that it works-scared that it doesn't,and even if it does,how will it change things.Personally I see your reactions as totally normal.

    Ride it out ..it'll all work out.You have almost 3 weeks to wait though so may as well read a good book or something relaxing.Sometimes...only sometimes I think about the SCS.In the future I might think more seriously about it and research it more,but I don't know if I would be a good candidate.
  • Oh the ups and downs, they become such a normal part of all this. Keep your hopes up about the SCS, they help so many people and I'm one of them, I love mine. I'm sitting here right now charging myself up. I hope the time passes quickly for you and that your trial is a complete success!!!
  • I love your new avatar =)
  • I am whole again! I have been trying for days to resize that picture and upload it, but always failed to get the resizing right! So I asked Ron for help, then tried one last time and got it! My mission is complete :)

    My Avatars name is Chewy...
    He's our Wookie! actually he's an Airedale.

    I'll tell him you like his picture! He's sleeping here, as usual!
  • He sorta reminds me of my poodle with the curly hair and all. I have a chocolate standard poodle, he is like one of my kids.
  • I know the feeling about the ups and downs. I have been more anxious than normal these last few days :SS . My trial is coming up on Tuesday. The pain this week has been unbelievalbly horrible. I finally had to give in yesterday and call the doc for something to relieve it. I was losing way too much sleep over it - even taking Ambien to help me sleep (|: . The nurses have instructed me to talk to my surgeon next week and see what we can do. I fell asleep at a decent hour for the first time in days last night and actually slept about 6 hours solid. <:P There are times that I think I am losing my mind and going 8} Sometimes I get far enough down that I just cry for a bit. I have tried sinking myself into books and that helps some. I'll keep you posted on how things go next week.
  • Wrambler....

    Deep breath in.............

    Deep breath out.............

    Relax those shoulders. Close your eyes (after you read this. lol)

    Start at the tip of your head and feel the stress leaving down your head.....

    down your neck.........

    down your shoulders to your fingertips.....

    down your back........

    Do you feel it? The stress going lower and lower in your body?

    Now, let it slip down your legs......

    To your feet......

    And now out your toes....

    Is it gone? Do you feel more relaxed?

    If not, try again.

    And you know what? You are NORMAL. You are just excited and the excitement is getting a little crazy, then you second guess yourself, and this causes stress, and your good ole buddy "Stress" take up lodge in his favorite room, your shoulders.

    How does your gut feel? Your intuition? Excited? Happy? Impatient?

    Use this!! Use this to calm your body, use the endorphins for good measure!! Don't let them spiral out of control into stress - stress is your enemy right now.

    AND, my big input on meds - if meds worked for people who are candidates for the SCS, we wouldn't be candidates for the SCS!!! Had I been taken off my meds, I would have been in such a state of inner disaster (physiological, truly) that there would be no way I could have made an informed decision.

    So honestly I ask - if someone can truly get off their meds and survive, why are they candidates for the SCS? Just honestly curious?? Most people I know going for the SCS are literally at the end of their rope, cannot imagine going on if this is what life is.....pain meds don't help enough, but take the edge off. I had never heard such a thing as getting off all meds for the SCS trial???? Wow Wow Wow. Glad my doctor didn't do that to me.

    Because, even on meds, isn't the pain horrible?? Isn't that why you're trying the SCS??

    Wrambler, I'm glad you weren't waiting when I was waiting - I don't know if we would have helped each other or driven each other nuts! lol You remind me of how excited I was, and this was just in November.

    The time really and truly does get here, and it just seems to take so long.

    OK, Deep breath again.........

    You deserve to give yourself time to stop everything, close those eyes. While you are resting, envision the leads blocking your pain. Envision BEING the massage chair, not sitting in a massage chair. That loving, buzzing, tingling and where is the pain? No where to be found. Is that the pain......far far away?? Barely noticeable because of the wonderful buzzing????????

    BUZzzzzzzzzz, buzzzzzzzzzzz, tingle.........tingle.........

    Many prayers and hugs, my friend. You will make it!!!

    Take care,

  • How does my gut feel? Uh, fat.... Actually I have been doing better the last couple of days. I think I'll be OK, I know I will be!
    Jacque sounds like she could use some help though! I feel sorry that she is so wound up this close to her trial starting! I have 2.5 weeks till mine yet X( As for my pain, yeah it is fairly awful. I have been pondering it some lately trying to decide how devistated I will be should this SCS fail. I don't want to hang EVERYTHING on this! I want to try and have some sort of idea on what I will do should this fail! I so hope it works, I so hope I can move on. Toss most of my meds and just move on! If it fails I need an idea in place to go to. My plan should it fail me is to call my PCP and ask him who he has found to refer me to for pain medication management. My PCP has very little knowledge of how to deal with this stuff, he is too afraid of addiction and pain meds to be managing my care for any longer should this SCS not work for me! It will work though ;))
    Jacque needs to follow the Cherish pre SCS relaxation plan, very very carefully! She should do so staring into that marvelous post SCS Cherish smile! The happy place is waiting for Jacque! I here it calling, come relax, take a nap! Sleep a while ZZZZZZZZZZZzzzzzzzzzzzzzzzzzzzzzzzz
  • In starting a new thread. It's been a great weekend <:P
    Shooting pains shoulder to finger tips for half the day, both days. :''( My 18 year old son goes to visit a friend in our old car about an hour from here and gets a ticket for running a stop sign and no valid proof of insurance =D>
    Now, I have been asked to attend a dinner at church next Saturday at 6:30 and when I balked at it because of the time I felt like a criminal :O
    So, I now feel like :T
    Geez, surely the week will get better? image:)" alt=">:)" height="20" /> If not you all will need to come vist me in a rubber room 8}
    My son was lost and rolled through the stop sign, or so he says. He asked the cop for directions and he says the cop would say nothing but, "License and insurance card please". Bleeping college towns anyway. Our insurance rolled over and the card was 4 days old, figures. My shoulder pain is nothing new! The church dinner, well, I need to take my meds by 6:00 or I can't sleep. If I take them I feel stupid, probably because I am. So I don't want to go. I will probably be brow beat into it. I wish the SCS trial would start. I really need for this to be over. ~X( Hey, I got to hope this will work don't I? O:)
  • Wrambler, it seems you have a lot on your plate to deal with right now. I only wish I had that much to worry with.......then I wouldnt just be worrying about the trial and the "what ifs". Although my pain is getting worse by the day - I did have a great day Saturday and Saturday night - I had a date - first "real" date I have had in over 20 years..........lol. It was truly a good thing for me to have happen at this stage in the game. It got my mind off of everything, if only for a little while, and it was very much needed. A good dinner and great conversation can do wonderful things sometimes - especially when you dont expect it.
    Hang in there bud, you will make it thru this I promise. Keep me up on how things are going for you.

  • Jacque, so glad to hear you had a date! Sounds like it went well! I think maybe I should try and get a date. Probably should not tell me wife though! }:) I have allready figured out how to manage the dinner at the church and it will do me good too. It's a potluck "get to know everyone" special, so it should be fun. I can take a low maintainer dose and do the regular dose when we are done.
    I don't need to get up early on a Sunday anyway. I) Conversation can be one of the best means to forget our troubles, even if just for a little while!
  • I read your earlier post about me needing to take the advise that Cherish gave you and I think you may well be right. Monday will be a very anxious day for me no doubt :SS . There will pretty much be only one thing on my mind.
    And I agree you probably shouldnt tell your wife about the date =)) I'm thinking if you do she gonna be doing this ~X( to you --- lol.
    I'm glad you figured out a way to go to the potluck on Saturday. I have to tell you - I truly enjoyed myself - even with the pain - last night. I didnt take my pain meds since I knew I was going to be driving. I dont like to take chances with other ppl you know. The laughs and smiles made it all worth while. ;)
    Thanks for your continued support - I appreciate it more than you know. >:D<

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