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Getting a little nervous... Six days and counting!

I go in Monday, October 22, for my trial!

I have been playing phone tag with the BS rep... At the moment, she's it :-) I have questions, but they are mostly about the actual implant surgery, not the trial. I have been following several people on SH that have gone through trials, implant, etc., so I feel as prepared as I possibly can be for the trial.

I have to say, I am really not looking forward to not showering, having wires hanging out of me, and having tape covering my back, but it is for the greater good. My main concern with the trial is infection... Won't there be a little hole where they put the leads in? Highway for bacteria/infection? That is my biggest concern really.

Anyhow, just wanted to post and vent some concerns :-) I am nervous, but so ready!

To top off my nervousness.... Type 2 diabetes run in my husbands family, so I check his blood sugar on a fairly regular basis. It's been running high, but last night I checked it a little while after he ate... It was 345! He hasn't seen a doctor in years, like 10 years, because he thinks medication is for the weak and doctors are quacks. UGH! Needless to say, I called and made him an appt with my family physician. His dad died from Type 2 almost two years ago, his uncle died from it before we were married, which we have been married for 11 years. I just hope to god he can control it with diet and not be insulin dependent, considering he says he will refuse insulin and just die. He has seen what diabetes does to people, first hand, and I think he is just afraid.

Ok, now that I have vented about that! I am off to do homework and try to keep my mind off of the trial and my husbands health.


  • Mel its getting closer. LOL I really don't know why your worried it really is simple.
    I have not posted much in the last few weeks but I am glad to see your time is close.
    Before you know it the test will be over. Lets just hope that it helps.

    Now for your other half blindfold him tie his feet to gather and show him what his life will be like if he doesn't get the
    Sugar under control. I have seen what it does to eye site and feet but they have to learn it some times to sink in.
    Just a thought I wouldn't really do it well maybe not depends on how big he is LOL.

    Well good luck with the trial
  • I am really more worried about the perm implant than the trial. Ive had plenty of injections, so i think the trial will be somewhat similar. I think it's just everything I have going on has my nerves shot.

    He's a big guy, but I can take him! Lol

    His dad and uncle both died from type 2, so he knows darn good and well. Like I said, I think he is in some serious denial. His dad was legally blind, had a failed kidney transplant, quad heart bypass, and did dialysis 4 times a week... The list goes on, and we watched, and went thru all of it with him. He ended up passing away with lung cancer that spread to his brain and pancreas failure. It was awful. I can't sit around and watch him do that too. His dad never got it checked, until there was already irreversible damage.

    I made him an appt for Monday, and he IS going! I will zip tie every one of his limbs!!! Lol
  • Mel, I wish you luck on your trial and surgery. Mine is set for Nov 6th(trial) and Dec 4th(surgery). I got insurance approval yesterday-yay! I know all about stubborn spouses, mine is the same way, wouldn't go to the doctor if he was dying and the one time he had to get stitches he whined like a baby haha! Make sure to get the extra long zip ties, can't afford for him to escape lol!
  • The best time to check your husbands blood sugar is first thing in the morning before he has anything to eat. Although that is a high number, a lot depends on what he had to eat. If you want to test after you eat, you test 1 hour, than 2 hours. At the 2 hour mark you should be returning to normal levels unless your eating something like pizza as an example, it can take 3+ hours to return to your baseline. I'm a diabetic and have to be careful what I eat. I love pizza but I only have it once a month, its considered my blow meal.

    Good luck with your trial, I'm sure you'll do fine.

  • Thanks all!

    B - his family has a long line of diabetes. He won't test it himself, so it's only when I force him too. It is a really high number, but I did take into consideration what he'd eaten. I've tested him a.m., p.m., hour after meals, two hours after meals, but because of the fact that he won't do it on his own free will, it's not consistent, so we have no real "for a month, three times a day, this is what it is." Know what I mean? I'm hoping my doc will knock some sense into him. He seems to think he's going to go in and they'll just prescribe him insulin right off the bat... I told him they'll want some tests ran and to see what happens if it tries controlling it with diet first. His diet is atrocious! When he's home, we eat fairly healthy, but at work... Wow, breakfast consist of a Monster or Red Bull, fast food, or, even worse, cupcakes or a candy bar, then lunch is even worse. I really think he can control it a lot with diet, if he commits to it.

    Anyhow, I am for sure ready to get this trial and see where it takes me :-)
  • I control mine with diet and Metformin. It sounds like if he makes just a couple of changes, he would be fine. One thing they will make him do is to test his glucose every morning to get a baseline. They'll also run an A1C test to determine his levels over the last three months. No offense intended, but he's a fool to mess with that stuff. My neurologist thinks some of my neuropathy is diabetic neuropathy on top of my other problems. Ask him if he wants his legs and arms to burn because he wants that cup cake or candy bar. Make sure you tell on him when he sees the doctor. Don't hold back.

  • MelWMMelW Posts: 427
    edited 10/18/2012 - 2:04 PM
    None taken! He is a fool! His arms fall asleep and hurt him constantly now! His uncle that died, had both arms and legs amputated before he passed away... It irritates me to no end that he hasn't tried everything possible to prevent it. I hope the doc puts the fear of god in him Monday.
  • MetalneckMetalneck Island of Misfit toysPosts: 1,382
    edited 10/18/2012 - 4:14 PM
    Your procedure had been a long train comming! Try to let your hubby pull up his big boy pants and manage his own health issues so that you can focus on what your challenges will be over the next week or so. Chances are he'll still be there , still needing your extra TLC when you are through the acute phase of your beginning treatment. Give yourself the time (mental and physical) that you will be requiring.

    Best of results,

    Spine-Health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!  (Click on Welcome to Spine-Health)

  • Yep, he's gonna have to! I have too much going on to worry about everything.

    I finally talked the the RN from Boston Scientific... Good thing too. She told me things I did not know. I bought my perm implant was going to be percutaneous leads, nope, it's paddles, which means laminotomy, possible laminectomy. I am not real excited about that. She also said I'll be staying at least one night in the hospital.

    I get my trial leads out on October 29th, and surgery will be the first week of November.

    I'm ready to git er done! Lol
  • Hey Mel its this Monday morn right?
    I hope all goes well and test helps you.
    Don't worry about the implant yet. If the trial works for you the laminectomys will be well worth it.
    Both my PM and OS wanted the paddles for me, they both said better results and less problems with
    migration. I do believe another person on here posted that she had the other leads but they still did
    laminectomys to tie them in place which also makes sense so they dont run away.

    Well good luck
  • Yes, it is! I leave in about an hour for the trial.

    If the trial works, then I think just about anything would be worth going thru to relieve some pain :-)

    Thanks, Rick!
  • Good luck and positive outcome!
  • Wishing you all the best with your trial Mel! Great that after the trial you don't have to wait long for the permanent scs if the trial brings you relief. Look forward to hearing how everything goes.
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • Sending thoughts & good vibes your way today!
    L5S1 REMOVED herniation. Years of pain & compression. Microdiscectomy complete!! Trying to be super smart & safe with recovery!
  • Thanks, Ben, Karen, and Trish!

    Just got home a bit ago. My best friend and mom went with me. I have to say, lead placement was super uncomfortable. It literally brought tears to my eyes. He ran into some scar tissue, and talk about pain. He tried to push them through as far as he could. Whew! But it's done and day one of my trial!!! :-) I'll let y'all know how it goes.
  • CandyJCCandyJ Posts: 105
    edited 10/22/2012 - 3:21 PM
    Here is wishing you the best Mel, so hope that it can go as well for u as it did for me. I am always here for you or anyone that has a ? about the SCS I have the St. Judes Eon Mini perm implant and have had it since May 2012.
  • MelW said:
    Thanks, Ben, Karen, and Trish!

    Just got home a bit ago. My best friend and mom went with me. I have to say, lead placement was super uncomfortable. It literally brought tears to my eyes. He ran into some scar tissue, and talk about pain. He tried to push them through as far as he could. Whew! But it's done and day one of my trial!!! :-) I'll let y'all know how it goes.
    I just got my trial wires out today kinda uncomfy but not bad , the second day was the worst for me I was so sore I thought something went wrong , it didnt work for me but I sure hope you get some relief and it works for you .Use some ice it really does help with the pain and the wires are awful mine didnt want to stay connected so my programmer finally taped them together. Be careful when you change positions , I got zapped several times and couldnt get it turned down fast enough ..Good luck and let us know how its going!!
  • I am so happy that your wait for the trial is over! Hopefully you are adjusting well and finding some positive effects from it! The first few days take some getting used to--if I moved too suddenly in one direction I would get zapped only to have all stim stop by changing positions (nothing painful though!). I was at the grocery store one time and as I reached up to get a can of beans, I got a zap and dropped the can! (Glad it wasn't something breakable!). I forgot about the instructions NOT to reach up above my head. The leads are only held in place by a stitch so changes in movement may increase or decrease the stimulation. However, I think someone mentioned not feeling well after the leads were removed and the same thing happened to me--very short-term though. I am anxious to hear what you think! Good luck!
  • MelWMMelW Posts: 427
    edited 10/26/2012 - 2:44 AM
    Softballmom, is yours cervical too?! Do you have your perm implant? For the life of me, I can't remember. :-) I know I've read your posts, but I've read so darn many that I confuse them sometimes ;-) lol, plus there just seems to be a lot more lumbar scs's than cervical.

    I can definitely tell the difference with the scs. The first few days, I thought the "buzzing" was going to nearly drive me to insanity! It makes my arms feel like they do after I have done yard work with a weedeater all day. You know that feeling afterwards where it feels like your arms are still "vibrating"? I'm getting used to it now though.

    I have to say, I'm glad my trial is as long as it is... If it'd only been three days, like some, I think, no, I know, my opinion and decision to proceed would have been totally different than how I feel now. Yesterday was day four, and the first day I wasn't getting anxious about the buzzing all day. I was crying and told my husband, on the second day, that I didn't think I could handle it and that I am back to square one... But, I had a talk with myself (I have to encourage myself often :-D) and reminded myself that it does take time to get used to and that i needed to ask myself whether its helping the pain, and it is, so I just have to get over the rest. The benefits outweigh the annoyance of the buzzing.

    Anyhow, three more days! I get my leads removed Monday, bright and early. I will be happy to get rid of the tape, wires, and all the other crap, but I do think I will miss the actual stim.
  • I have had the permanent SCS for exactly 6 weeks now and it is cervical with the paddle leads. I kept the stim settings low at first because I was in so much pain from the surgery. I have 3 incisions that are pretty long with the top one so high they had to shave about an inch and a half into my hair line. Unfortunately this incision is visible a little above a lot of my shirt collars and my hair hits the incision even if i pull it back into a ponytail. I think that because of where it is located it remained irritated long after the other two healed. I also had muscle spasms constantly throughout my upper back and neck but eventually these go away. I used ice a lot for the swelling and incision pain and heat for the spasms. You were awesome for hanging in there throughout the duration of the trial (even though you were frustrated and quitting was a possibility) and being patient. Because of that you were able to finally feel some relief--and that's great that you were even able to lower your meds!! The permanent placement is going to be more challenging than the trial since it entails major surgery but your positive self-talk is going to help you through the initial rough patches along with patience once again! The trial does give you a feel for what to expect with the permanent placement although at a lower scale. You will get used to the vibrations over time--I've gone through a lot of trial and error with my settings but finally feel like everything is coming together and working great :-). Mel, feel free to send me a PM with any questions you have and I will try to help and answer them based on my experiences! I'm just so happy for you to have finally started the trial and feel a difference! I hope so much that you continue to feel better! You're almost there!
  • It has been quite some time since I had my three neck surgeries, and now the levels above and below the fusion are causing some problems and starting to push on the spinal cord and of course the nerves...bone spurs throughout the fusion levels as well....the nuerosurgical team is suggesting the SCS for me, and it seems a little freaky. Thank you for all of your time and comments, and i am curious as to how you are getting along now that some time has passed? Would you go though it again? They should be calling me monday to schedule the temp SCS.....

    Thanks again, pain free hugs!
  • MelWMMelW Posts: 427
    edited 11/04/2012 - 8:07 AM
    Softballmom, the doc said I will have two incisions, one being in the hairline as well, and then the other lower back area. He said they will have to shave part of my hair too. I was not expecting that... Oh well, I will just be happy to have it back again.

    I remember the dreaded spasms... Blah! I had them something fierce with my fusion. Aside from the initial pain of the fusion, the spasms were the worst of it.

  • I was surprised when I felt that my hair was shaved! On top of that, I had three incisions instead of the two they told me I would have. I am so happy that I found this site but wish I had written down more questions to ask regarding the procedure. You know, I never even met the surgeon who partnered with my PM doctor for the surgery. My information came only from the PM nurse practitioner and even now that is who I see for all of my follow-ups. After my procedure the hospital wanted to send me back home (90 miles away) and were a little perturbed with my husband and I when we insisted I stay the night. It is not typical procedure to keep patients overnight after a SCS implant. However, since I had read Kathy's post, I knew I should stay the night! Good thing because that was one hell of a night and once again, due to Kathy's post, I asked for morphine which although it makes me sick, it was worth it. You are so much more prepared than I was and I am SO happy that they are telling you what to expect! Each hospital, state, and even insurance makes a difference. Sounds like you will be in good hands!! :-)
  • The surgeon doing the implant is the same one that did my fusion. Although I know him, I did wonder if I'd be meeting with him to ask specifics about the surgery. The nurse called me and said insurance now requires that you meet with the surgeon prior to the implant, which I think should be done regardless of what insurance says... That's just me.

    I'm so glad there's a section for SCS. If not, I'd only know the generic info on the Internet. It's been so helpful, with the trial, and I'm sure it will be for the implant as well.

    My doc told me they automatically have you stay over one night, which I'm really happy about. I hate being in the hospital, but want the time for extra pain control before I'm sent on my way. When I had my fusion, they did the surgery, recovery for a few hours, then sent me on my way. I thought it was a little weird and wish I would have been kept at least over night.

    Anyhow, I'm counting down the days! My dad and step mom are coming in from PA for thanksgiving, so that'll help pass the time some, then I have tests every other week, plus finals, and getting everything ready for me to transfer schools, so I have plenty to keep me busy! Not to mention, cleaning my house and getting everything ready for after the big day :-)
  • yes, getting prepared when you have kids too is just one more challenge! I wanted to have a clean house and all laundry done since I have 3 active girls. With two boys who are active, I'm sure your laundry piles are like mine or worse! I call it Mt. Saint Laundry! :-) Well, my intentions were good but I couldn't get everything done. My husband tried to help with laundry but he forgets to check for stains and more importantly, pockets!! My girls have lipgloss, rocks, jewelry, crayons and anything else you can think of in their pockets! My clothes were washed and were dried so now my girls have new doll clothes!! LOL! He tried :-) Just do what you can and the rest will get done eventually!
    I'm so glad you are staying overnight and I hope you are comfortable! After that first night, I did pretty well. I set an alarm at first to take my pain meds so I would always be on top of the pain. After a few nights of doing that I slept fine. I will say a prayer for you! A
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