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Posted 5/15/2009 4:18 AM (GMT 0)
FJ, yes someone on here mentioned the problem with coughing and another person mentioned something about leaning their head backward and it produced an extra jolt lol. I wish who ever posted about these things would come join here on this. He keeps going, and going and going and going lol. Will you have an internal battery or external? Susie
Posted 5/15/2009 5:59 AM (GMT 0)
Susie, when they put the perm. unit and leads in, it will be an internal unit. They say the battery is at least 5 years use if not they will pay for another surgery to replace it. Like I want to prove them wrong. They showed me the unit and the leads that will be used. So far I am still hoping for the best but I realize it has its limits. They say that their goal is to reduce my meds by 50% and the pain by 50%. They also say that the trial is not as effective as the perm. unit. As I stated earlier, I will go in and they will do some programing modifications and then send me home for the weekend. They don't want me to take off work but I will try and take tomorrow and Saturday off as I have to work on Sunday. I am too nice to my employees. I will update tomorrow. Thanks.

Posted 5/15/2009 4:35 PM (GMT 0)
FJ please ask them about the life of the battery versus usage. A couple of people here had to have their batteries replaced alot earlier because they were having to use the unit so much. One was going thru a battery in like 2 1/2 yrs. Perhaps this is something they have improved, however, its worth discussing with them....He keeps going, going, going, thats FJ.

Susie
Posted 5/15/2009 5:10 PM (GMT 0)
John-
I think what you are experiencing is pretty typical. I also have a BS unit. I almost never can sleep with it on. Nighttime is when I take the vast majority of my meds. The temp unit really bugged the heck out of me. It would jump up so high sometimes when I would stand up that I would scream at the top of my lungs. :) Coughing, sneezing, yawning & so on were also all triggers. The same things were problems during the first couple months with the permanent implant, but over time they improve. 3 years out, I still can't sleep with the SCS turned on except on very rare occasions, but the other issues have mostly resolved and all things told, I still really benefit from it.

I'm going to go against the advice of everyone here (I'm not sure any of them actually have an SCS) & tell you that you need to listen to your doctor's advice & work your normal schedule during the trial. Your doctor recommended that for a reason. Yes, you are a work-a-holic and ought to cut back on your hours, but now is not the time to do that. If you are resting more than usual, your pain will decrease from the resting & you won't know whether or not the SCS will actually benefit you. Not everybody who goes through the trial actually benefits from it. And I have met a couple people who cheated their trial & got the implant, only to really regret it b/c it doesn't help them at all & causes them all the usual troubles. I know you're tired & it sucks to go to work when you're already feeling lousy, but you really won't get an accurate read if you're not going about your normal daily activities. Do the trial, then cut back. I'm all in favor of you getting a break, I just think you need to wait until the trial is over before you take it.

I'm not trying to be cruel. I just know all the problems my SCS has caused me & if I had to put up with all those issue PLUS not get any real relief, I would be so angry; I just want to save you from that. Getting accurate results from the trial is so important & I really hope you will consider what it will take to get them.

best,
frances
Posted 5/16/2009 1:13 AM (GMT 0)

Frances, I did speak with the rep about the battery and the use. He still says that if the battery does not last they will replace it at their costs. The problem with that is who wants to have the battery replaced. He stated that they are testing a battery that will last 15 to 20 years.

I had the tune up today and they say everything looks good. They checked and said the unit says I have been using it 20 hours a day. They feel I am giving it a very good test drive. We cahnged a few setting and now I am able to zap my feet. My PMS stepped in and asked me to stopp taking my meds except at night and see if we can look at the possibility of decreasing my meds. The problem is I am going full speed every day and I refuse to listen to the pain until I get home and stop. You all know very well that this can cause one to get behind on the management of the pain and the it takes longer to get it under control. I have to work again this weekend so I am sure I will get a normal view. At this point I am still looking at the whole senerio as possitive.

Posted 5/16/2009 1:55 PM (GMT 0)

FatherJohn,

Good luck today working, please LISTEN to your body...if its too much for you, GO HOME!!  The SCS sounds like it is doing wonders for you....REMEMBER your PMS wants you to TRY to cut back on your pain meds, if you can't then DON'T!!

((((((((((((((((((FatherJohn)))))))))))))))))))

XXOO
Patti

Posted 5/16/2009 7:31 PM (GMT 0)
Fatherjohn,
I'm not going to give you any advice one way or another (surprise, eh? LOL) but just want to keep cheering you on to the finish line. I feel like you're on your way to a touch down!

PaLady
Posted 5/16/2009 8:24 PM (GMT 0)

Patti and PAlady, I seem to be haing difficulty posting today. I have been kick out of the forum 5 times now. I will try one more time. Thanks for the encouragement. It was a bad night as the point of incision where the leads are inserted was very sore last night. I have so much tape and bandages on my back that I can't get in to see it. I do not have a fever so I don't think it is an infection. It feels a little better today so I might have irritated it yesterday. I will keep watching it today but sleep was slim last night.

PAlady, you might want to check out Scarred thread about being up at 3:00 AM as someone vented on you and I feel he was out of line. He said he was leaving the forum so the problem might be solved. Just to bad people have to say these kind of things.   

Posted 5/17/2009 12:10 AM (GMT 0)

Fatherjohn I read that post early this morning and it was VERY out of line.

Yes I have been kicked off the forum many times today.

I hope your night is a better one then lastnight.

You will be in my prayers that you will get some sleepy dust in your eyes and sleep the entire night

Laurie

Posted 5/17/2009 12:18 AM (GMT 0)
Fatherjohn,
I also have been having huge problems getting onto the forum. Was on, got kicked off, and keep getting error messages when I try to get back on. So it must be something going on with the site. Maybe they're making some changes - hopefully good ones!

FJ - i don't know if what you're experiencing is normal. Probably with difficulties posting people who have had the stim. haven't been able to respond. Seems like you're keeping tabs on it regarding an infection. Hopefully your doctor has an on-call number if you need it.

And thank you both for your comments about that post. I did see it in the wee hours and it certainly was hurtful and I feel undeserved. Glad others thought so, too. I did send an alert to the admin. about the post being hurtful to me. I hope he got it but with the problems on the site who knows. Anyway, thanks for the support!

I haven't even had a chance to read your other thread, FJ. Interesting title. I just hope this response gets posted!!

PaLady
Posted 5/18/2009 2:05 AM (GMT 0)
Hi fatherjohn,

I just wanted to send you a shout-out & see how you are doing! I hope you are continuing to find the trial successful & have less pain!

Skeye
Posted 5/18/2009 4:27 AM (GMT 0)
Skeye, I tried to post but was kicked off. Someone must have my number. Anyway, I am using the until 24 hours a day trying as much as I can so I know for sure that this is a good option. They have already set the date of June 1 for the implant and are waiting for me to give a thumbs up tomorrow. They also wanted me to drop my meds to just at night. I am waiting to see how that is going. I had a discussion about break through meds as I have had some miserable nights just like some of you but they have not addressed that yet so I just have to tough it out. I have not missed any work although there are days that everyone would be better off if I was at home. The unit comes off tomorrow so I will see what it is like to not have it on for a few weeks. I hope you are doing better. I feel so bad for what you have to go through. I wish there was a way to help each other sometimes. Keep fighting the good fight.

Posted 5/18/2009 5:28 AM (GMT 0)
Fatherjohn,
But I'm curious as to whether you thought the unit was helping - especially during the day. It seems like at night is an issue, but did you get through work without meds just using the stim?

I'm sure the answer will reveal itself, although I'm guessin you could postone the date a bit if you still wanted to think about it. The trial seems so short, but I understand from others here that there's a fear of infection to leave it in longer.

Hugs!

PaLady
Posted 5/18/2009 6:01 AM (GMT 0)
PAlady, I will try and keep this short but still complete. There are parts of the trial I am sick of. At the same time I can see how it could be a big benefit. I am tied of the tape and wires on my back, no shower, the spot where the wire goes in my back is sore and it is hard to get comfortable. I try and get used to the constant vibrating but it does get old after awhile. At the same time, I don't recognize the pain during the day as much. It is still there but the vibrating is a good distraction. To make the trial longer, infection would be a bigger concern. As well, the wires ane not anchored in so they can be pulled out easily. The idea is that by distracting you about the pain, you will use less medication. I see how that will be possible. But night time is still going to be the biggest issue. I can also see that it could be easy to get behind on pain management and have more bad nights. We all know that when we get behind, it seems impossible to catch up. My PMS and I are going to have a deep diiscussion about break through. I know he is very conservative but he is not the one that crawls around on the floor crying because there is no relief. I am still going to give this a try.  

Posted 5/18/2009 7:24 AM (GMT 0)
Fatherjohn,
I wish you all the best. I know you will make the best decision for you. I don't know about these "conservative" physicians. I mean, I can understand it to a degree, but we're just trying to live life. You're right - he is not the one crawling around the floor in pain.

((((((((((((Fatherjohn))))))))))

PaLady
Posted 5/18/2009 7:26 AM (GMT 0)
I know that this thread is soon to be over the limit but I don't want to start a new one tonight. I spent time replying and adding a few thoughts this evening to some threads. Trying to encourage and support others who have deep needs just like me. I worked until 10:30 PM tonight and now am home and as I lay in bed and my thoughts are slowly slipping and I am trying not to allow the anger to take over. I have turned the stim down as I try to find rest but as I had imagined earlier, as I have reduced my meds by only taking them at night for two days, the pain is increasing and I am powerless to do anything as I explained, the PMS has not dealt with break through meds I have had the stim on constant since Friday Morning and doing everything I am supposed to. Now I get to pay the price. My wife is tired and she has seen this before so she just wants to close her eyes as she knows she is powerless to do anything. I know the frustration of the rolls of tape they used on my back that are itching without relief is only supporting the feelings I am having with the onslaught of pain. Tomorrow I get to have it removed and then I will be polite and be the nice guy as by tomorrow I will have worked through the anger, frustration and depression to be my normal positive respecting person. I have written these comments before but deleted them. I am finding mental relief just making myself write to help work through the night. Maybe it was the number of students that I had to help through issues today that now as I lay here, I am struggling with who is going to listen to me as I want to vent. I am not going to delete this and it will be ok. I find it amazing as not long ago I was writing to encourage others or talk with students who were looking for help like a person trying to find directions on mapquest. Now I have probably confused some of you as to who is this who has taken over the computer. Thank you for letting me vent and express myself without being judged or criticized.

As I go back and read this, I wish I had not written all this but I made a decision I would not delete. I hope I am understood but even if I am not it is simply ok.


Post Edited (fatherjohn) : 5/18/2009 1:31:27 AM (GMT-6)

Posted 5/18/2009 7:39 AM (GMT 0)
Fatherjohn,
I am so glad you did not delete.

There is nothing to criticize.

I, for one, am listening. I think I have an understanding of what it's like to have to focus on others so, so much. It's almost auto-pilot.

I am listening.

PaLady
Posted 5/18/2009 8:09 AM (GMT 0)
PAlady, after I posted I saw that you were logged in and I knew that there would be a response. Thank you for understanding. I hope you find some sleep.

Posted 5/18/2009 8:15 AM (GMT 0)
John,
It is really between you & your doctor to decide whether or not the trial is a success.

However, just to share my experience ... I did not cut down much at all on my meds during the trial. But the pain level did seem to go down a few levels & I was using it an average of 18 hours per day. I could not sleep with it on & could not drive with it on. A friend of mine rigged up a contraption so she could wash my hair b/c it is very long & was getting disgusting, but my leads were in my neck, so we had to be very careful. I think we got more water on the floor & on her than in my hair, but good times were had by all & in the end my hair was slightly less disgusting. :)

After the permanent implant, I was still using it 16-18 hours per day. The post-implant pain was substantial. My PM said that I was his first patient to do the surgery with only local & he wondered whether that might have had an effect on my post-implant pain. I guess we'll never know, but I have no regrets. I was on more meds for the first few months, and then slowly started cutting them out one by one. A year later I was down from 12 pre-op/15 post-op to 4. Now, three years later, I am down to 2 & am only taking 1/3 of the dose I was on pre-op. I don't use my SCS nearly as much as before. I don't need it nearly as often.

I did have to cut way back on my activity level b/c, like you, I was always working. I'd be up at 6am & would work with only a few breaks until 11pm, 6 days a week. Sundays were full of personal activities & volunteer work. I had to change all that post-op & honestly I really benefited a lot more when I did that. I gave my body a chance to heal & now I am stronger than I've been in a very long time. I am able to do more & more every day & have once again cut my pain meds in half (so actually, I'm now on 1/6 the dose from pre-implant). If there were teaching jobs to be had, I'd go back to the classroom. Though perhaps it is better to avoid the temptation to overdo & continue working on getting stronger for another year or two. :)

Anyways, I hope that helps a bit. Try & hang in there. It does get better. The surgical site for the permanent implant is not so itchy & raw b/c they don't use any tape. It could be the tape is irritating you. My PM changed out the tape on mine after a couple of days b/c it was driving me crazy (which meant, I was driving him crazy with my whining :) and that helped. But I think you only have another day or so, right? If that's the case, maybe just keep toughing it out & everything will be better before long.

feel better,
frances
Posted 5/18/2009 9:19 AM (GMT 0)
Frances, Thanks for the information. I know that everything is on course. I am planning on the perm implant June 1. The tape is driving me crazy for sure. Tomorrow that part is done. Even though they laughed at the thought about not shaving my back and taping over the wonderful hair. I can endure. I even know that this is not the miracle cure even though it may be very effective. In fact the stim is not the issue, just an aggravation at times that by itself would not be big. The issue is bigger. I have no option when it comes to a doctor. My only option besides this PMS is 650 miles away and that would mean a larger than life option. So I wait and work with this dr hoping for relief. I have given the stim the full workout and don't regret it. My venting is not about the stim but the lack of relief and being tired. I hope that makes since. I am thankful for the information especially the longer term results. There are several forums just for the stims and what you say and what I have gone through are right on track with what I have found. But at 2 in the morning with no options is frustrating. I will make it I have before but when you are in the middle of the fight, you get tired. I will be at work at 8 am and life will go on. It is just the frustration between now and then. Thanks and hope tomorrow (actually today) is a wonderful day for you. Blessings!

Posted 5/18/2009 1:02 PM (GMT 0)

(((((((((((((((FatherJohn)))))))))))))))))))))

XXOO
Patti

Posted 5/19/2009 2:33 AM (GMT 0)
((((((((Fatherjohn))))))))) Vent all you want about your frustrations & pain. We are here listening, and we will understand to the best of our abilities. I am quite surprised by the sudden decrease in pain medication. I would think that that would happen after the permanent device is inserted & that it would be done slowly. Wouldn't such a sudden drop throw you into withdrawls? I hope you've made it through the day alright. One more day of the trial, and then you get rid of that icky, itchy tape, and hopefully get back on your meds & feeling better! I really can't imagine how emotionally tiring it is to council students all day long, especially when you have such problems yourself! Hang in there!

Skeye
Posted 5/19/2009 3:02 AM (GMT 0)
Patti & Skeye, Thanks for the caring thoughts and hugs. It was quite a day. I did not get to sleep until after 4:30 this morning and was up at 7 to get to work. The day went fast at work as normal and then to the PMS. They forgot to book my appointment on their computer and that meant pushing other patients back to fit me in right away. I felt bad for the patients that were waiting and the PMS did not rush which could be good. It was a long discussion about if he was going to do the implant. It came down to the fact that I work very long hours and I need to have my head clear to be able to teach so he decided that it was a go. The fact that there was no relief at night almost blocked the decision. I am back on the Methadone and he had added Ambien with the Nortriptyline. He was at a loss of what to try at night to either kill the pain or knock me out since over the years they have already tried so many. He is hoping that after the implant on June 1, we will work again to dropping the meds during the day. He did not think that doing so was putting me behind the pain and then at night I was trying to play catchup to beat the pain. Skeye, do you mean we can actually have withdrawls from dropping meds like methadone cold turkey? I wonder why he does not think that is a possibility. I appreciate some things with this guy but at the same time he is so conservative I am not sure he is always thinking of the comfort of the patient. He struggles with the thought of depression when someone puts in the hours I do. I did not think I was all that different. The surgeon who did my fusion will actually do the implant since my PMS can't do a solo at the hospital. I hope to have the Ambien cleared through Insurance tomorrow and see what that wiill do. Here's to hoping for a restful night for all of us.
Posted 5/19/2009 4:51 AM (GMT 0)
Fatherjohn,
I'm reading slowly through posts and saved yours for last (the best, of course). You sound like you're clear with your decision about the SCS, but not so thrilled with your PMS. I understand you don't have a lot of options, though.

Sometimes (maybe more than sometimes) I get so angry at the control doctors have over our lives. This isn't meant to in any way be disrrespectful of those of you who are younger, but those of us who are a bit "older" I think have some rights to choose how we want to try to spend what time we have left especially when it comes to working. This "conservative" stuff is a bunch of junk; why not let us make an informed decision about our lives as long as it's not outside of the parameters of medical standards. And that really applies to any age (it's late, I'm rambling again!). I hope this makes some sense!

I'm not sure but I think that methadone is supposed to be titrated slowly either up or down, but it has such a long half life maybe withdrawals wouldn't enter into the picture in a time limited case like yours. But I'm not at all sure of that.

I hope you get some sleep! No itchy tape and a nice warm shower!

Hugs,

PaLady
Posted 5/19/2009 12:06 PM (GMT 0)
FJ,
Geeze, you've been through a lot since I've been gone this past weekend! I feel guilty I wasn't around for you! I read over your posts and one thing I don't quite understand is why they want you to lower your methadone? Of all the narcotic pain meds, methadone gives me the least side affects. It made me sleepy when I first started but that went away and it doesn't fog my brain like other meds. I don't understand why you can't use it w/ your stim? Why stop if it's helping?Also, cutting down quickly will surely give you withdrawl within a couple days as it stays with you so long if you don't taper off really slowly. Like PA said, they should let you descide, only you know whats going on in your body. Well old boy, I'm in your corner and PLEASE don't worry about venting, we all do it, some like me more than others! Thats the great thing about this place> you can get it off your chest here!!!!
Hang in there>
Your Buddy,
Pete
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