Firstly Sarah I'm really sorry to read your post and how badly you are now suffering. Is this something new?
I completely agree with Fiona after having my trial done in April and then having to wait over 4 more months for me was just torture. It's being given that new lease of life and then taken away and having to revert back to that awful pain and suffering again. If you are at the stage where you are suffering really badly with this new pain and know that you won't be able to continue if the trial is successful, I don't mean to be negative but the trial isn't always successful either, so remember that too. You are the only one who knows how you feel now and whether you can continue, if successful with the trial, with the permanent one. If you think that you will need to put it on hold, I do think that it's pointless now doing the trial. You will need to address this other issue you are dealing with first. I'm taking from your post that the SCS won't 'help' this current pain.
I will continue to pray that some day you will get to a stage that you will be pain free. I really hope it comes sooner rather than later

Sarah,
Hopefully your Dr will be able to address this new and alarming issue you are facing.....I pray that he'll direct you as he assesses what is going on.....

The others have said it well - regarding the trial. It is indeed quite a procedure and there is pain involved and I know you don't like needles.....all this is done using needles and incisions and please take heed to what they've shared.
The last thing you need right now is a new set of pain that goes along with new incisions - especially if the SCS is being put on hold.

Hopefully your doctor will take a good assessment of what's going on with you. If he feels the trial could possibly prove to tackle these increased pains with such a variety of new symptoms...then hey, that would be a wonderful light to shed upon this very frightening and stressful time for you.

I am sorry you are dealing with this Sarah......
Prayers are certainly going out to you

Caring,
Rae

I desperately want to do this. My mom wants me to as well.

But... there is a chance that she may lose her job because of my health. It's a big mess and we can't figure out a solution.

I don't want to have to cancel...

I just don't want to go through with it and then have to stop or postpone the surgery... after going through the trial. My head hurts.. I absolutely cannot figure out a single solution.

I can understand your desperation for pain relief. However, doing a trial and not being able to follow up on the permanent has the strong possibility of making your current pain worse. Please consider this before you make any decisions. I know being in pain can cause us to want to do anything for relief, even if only temporary, but this trial procedure is JUST a temporary relief and at the other end there is a good likelihood that your pain may be worse than it is now. My question would be do you have the meds. to deal with increased pain should you get the trial and have to put off the permanent implant? I had to greatly increase my amt. of pain meds. between getting the trial and waiting for the permanent implant. Even the surgeon and my family dr. didn't understand this (or even believe me, for that matter) but it was folks here on this forum that validated what I was dealing with and many recounted their counting the days until the insurance would allow them to get the permanent implant because their pain has increased so.

Please don't do this just for temporary pain relief as you may make yourself hurt even worse if you cannot follow through with the permanent implant as soon as possible. However, if you do the trial and do plan on getting the permanent, try to get your dr. to understand that while waiting on the permanent to be approved/set up by your doctor, you may need increased pain meds. to help you get by.

You know pain can make us see things differently and want to try anything. After having all my surgeries I often look back and think, 'why did I go for this op and that op etc'.....and the reason was that at the time I just wanted ANYTHING that would give me relief. The mere mention of a discetomy or a spinal fusion was great news , because I felt oh here we go something to try and Im sure IT will help as they said it would. And it didnt . When you are feeling so bad and so low, as long as something is being done, be it and operation or even a trial, you feel that your getting somewhere!. Well I did. I wanted the doctors to be on my case 24/7 to be coming up with solutions all the time. But you know in hindsight I now wish I didnt just go and do EVERYTHING that was suggested to me. Because I ended up worse than when I was first referred to the Spinal Surgeons. I dont regret doing the SCS though. It was a good decision. Its not 100% curing my pain, but its helping somewhat. I can only imagine the absolute pain and suffering you are going through Sarah. But you must put try to put everything into prospective too. This trial is no picnic. Its a painful procedure as they have to do the preparatory work and then insert the leads. Its fantastic if it works....its disappointing if you then really want it and have to wait a LONG time for it. I hope that you can make the correct decision for you. I hope that your mum wont lose her job because of your health. I would also think that if and when you get the 'ok' from your insurance company that it doesnt really matter how long it would be before you do the permanent implant. Thats just my thoughts. I dont know how your insurance works in USA but here if your insured your insured.
You should speak with your Doctors and Im sure they will be able to medically advise you if its the right decision to go ahead with the trial, even if you have to postpone the permanent implant. Although I would have thought that maybe they would be more inclined to say to you to wait until you are ready to go ahead with both the trial and permanent procedure and do it with a couple of weeks of each other. Thats just my thoughts as Im writing.
I do hope today you are feeling better and that you will make the right decision, as your trial is only days away.
Take care
Jackie

I am a bit confused. I already am fully aware that doing the trial and then not going through with the surgery will make the pain a lot worse--that is why I am thinking about canceling the trial. That is exactly my point. I'm not sure what I said to make people think that I didn't know that.. or that I wanted to do the trial for just 3 days of relief. I would -not- go through with that only to get a few days of relief, only to have it yanked out forever.

Pain medicines don't help me at all because my body doesn't absorb the pills--so whether or not I do the trial, I will not get any relief from medicines.

If I do the trial and then have to wait with the surgery, I will just have to deal with the added pain--I can't increase my meds to help. It won't.

And if I don't do the trial and just continue on as I have been, I will not get any relief from the medicines. So either way, I'm going to just be sitting in pain.

I told my mom that we should consider not doing it.. and she won't even hear of it. She says there is no way that we are not going through with this.. not just the trial, but the real surgery as well (assuming the trial is beneficial).

But I do not have people to help me after the surgery. My mom planned to take time off to be home with me until I was able to get up and go to the bathroom and get water on my own. I don't know how long it took all of you to be able to get up and move on your own... but my situation is a bit different since I am already bedridden and can only get up for 1-2 minutes at a time.. a few times a day.

I already need a lot of care. If I need water or food or anything else, I usually have to just wait until my mom gets home from work.. and now that she is going to group therapy three nights a week, there are some days (like Wednesday) that the only time she is here is from noon-1pm and then after 8pm. So with an added surgery and more limitations, I am going to need people here to help me.

My mom was going to take time off to be here as often as she could (until I can do it on my own) and then I have a friend (she is 64 and a former nurse) who was going to come a day or two a week.

But now my mom cannot take time off because of her boss--she has the time built up, that isn't the issue.

So if I only have someone here to help me 1-2 days a week (during the day) and then at night (my mom).. that isn't going to be good enough.

Unless I can find a way to find enough people to help me from 8am-9pm every day for however many days or weeks until I am able to do things myself again. And everyone I know is either working full time or going to school... so I can't find people to help me.

I am so frustrated because now I am really hurting from this new pain that started yesterday.. I NEED relief and this was the only option that worked best with my circumstances. Increased pain medicines, internal pain pump.. those are not going to work for me.

I need to move forward with this...

But I can't be left alone and unable to get up to go to the bathroom and things like that... I can't just make my mom's boss let her take time off... and I can't snap my fingers and make people appear to help me.

So I don't know what to do. My mom said there is no way that we aren't doing this on Tuesday... but I don't feel comfortable doing it until I know that I will be taken care of after the real surgery, if I have it. And it doesn't look like there is any way to guarantee that at this point. Ugh!

Would your insurance allow for home health care, for a few hours a day, for a while after your surgery?

After the trial is not as big a deal as is after the permanent surgery. After the trial they just remove the leads, put on a bandage and you're on your way, waiting to hear when the permanent surgery will be scheduled. It's the potential pain that comes afterwards that's the bummer. It was bad enough for me that it sent me to bed, whereas before the trial I was in bed only occasionally as I just pushed past the pain and forced myself to continue to do stuff like housework. But after the trial was over and the pain increased, I was living on increased pain meds. and in bed most of the time until the permanent surgery.

The time you really need help is after the permanent surgery. You need someone to stay with you for 24 hours post surgery, and even after that you are so limited in what you can do for three months that being in bed and getting up occasionally may actually help you to not be doing things you shouldn't be doing. Those of us who don't need as much help as you, have had to be very careful to not do things and mess up the surgery.

You said something about pain meds. not helping you. Did you mean oral meds.? For a long time I've found that the best way for me to take pain meds. is by suppository as the oral meds. made me throw up and very constipated.
I take dilaudid suppositories along with phenergren suppositories, as the phenergren helps with nausea. Just a thought.

I just went back and reread my last post.. I hope I didn't give the impression that I was angry at all about people talking about how the trial without going through the surgery would be a painful thing. I am not at all upset that anyone addressed it, I just wanted to say that I already did know that and that is where my concern started. If I didn't have that concern, I would have just said nothing and gone on with the trial.

I asked my mom this summer about home health care and she said that they didn't provide it unless I was terminally ill. Now today she said that she didn't check with them, and that that was the case for something else. But I am so new to this not being able to take care of myself... I am bedridden anyway and so I don't need someone here to sit with me as I lay in bed.. it is when I need to get up and go to the bathroom, which is the only time I am able to leave bed. And though I know that I will have to get used to it someday, I am so not comfortable with anyone but my mom helping me with that. But I do know that there will be times in life when I need help with things like that and so I will have to deal with it and get over it someday. But the other part (the bigger part, really...) is that even if my insurance would cover it (and I have no idea if they would or not), they wouldn't pay it all... and there's no way we can afford to pay even a partial bill for that much time.

We have already arranged for someone to be here always for the trial.. not when it is over, while it is occurring. I am very sensitive to touch.. and while I'm hoping it isn't going to happen, I am worried that the sensation will irritate me more than it will help me. So, we have made plans for someone to be here with me while the trial SCS is in. That's already been taken care of.

It is after the real surgery that I am worried about.

From what I've read, it sounds like most people really had a lot of pain and trouble moving around for anywhere from 7 days to 3 weeks. And that is people who already have mobility... so I am not sure if my situation would be that I am less able to get up and go to the bathroom and may need longer... or if it would be shorter since I am in bed all the time anyway.

My mom is going to talk to HR at work on Monday. She has a meeting set up. She can't take a month off of work to be home with me just because I am having surgery. BUT.. she may be able to take up to 8 weeks off if she needs it personally (like if she was sick or having surgery) and then the university could hopefully hire a temp for her office. Since she is currently battling an alcohol addiction and is going to counseling and group therapy 10 hours a week, she is going to see if she can get some time off around when my surgery would be. Not that she is going to lie to them. She has three big concerns right now--her job, my health, and her recovery. She can't give 100% to all of them like she would like to. So, if she can explain that she is having a hard time between the three, maybe she can take sick leave (which she couldn't take to care for me.. it would have to be vacation time, which is more limited) and stay home to help me, but also to focus on her therapy without the added stress of work. I'm not sure if it will be that easy, but that would be nice.

But since I wrote that earlier, something else has come up. I am not sure if I should be doing the trial anyway. I was reading the information that came along with the DVDs from Medtronic that my doctor gave me. It said basically that the whole point of the SCS is to control pain so that a person can do the things that he or she needs to do each day without so much pain. Okay... I already knew that. But it wasn't until I read that today and thought about it... I don't know if I should even be going through this process. I'm not suddenly changing my mind or not wanting to go through with it.. that is not the case at all.

But... the reason for the trial is to test it and see if you can tolerate it and how much it helps your pain, before doing the real surgery. So during the trial, the person is supposed to be active--doing normal every day activities to see if it covers the pain.

Am I allowed to do this if I am bedridden? If so, alright.. let's do it.

But... if I do the trial and am not able to get up and walk around... go shopping, do the dishes, and all the other "normal" activities... then should I still do it? I don't know the answer to that.. and I am trying to find it. Going to try to get a hold of a doctor tomorrow and find out. See... as of right now it doesn't look like there is any solution that will allow be to get out of bed and live a "normal" life. So pretty much being bedridden is not a temporary thing, but a permanent one. So if I do the trial and surgery and can live my life (in bed) and get pain relief... that's good enough for me.

But if I go through all of it.. and then in a year, five years, twenty years... we find a way to stop the pooling and I can get out of bed... I have no idea if the SCS will help my pain as I work on being more active.

It's complicated.. because my original thought was.. why go through it now if it won't continue to help me when I am able to be active again? I can't guarantee that it will still do anything for me.

At the same time, I may never get out of this bed.. and if I just sit and wait in pain... I may be waiting until I die for pain relief.

I just don't know. So hopefully I can get a doctor's opinion. I mean.. my pain management doctor is the one who recommended this and has taken me through this part of the process.. and he knows I am not stuck in bed from the pain alone.. that even with pain relief, I won't be able to sit up in a chair or get up and walk. He's never mentioned this or thought twice about moving forward..

It's just something that has never come up... and I would like to be able to talk to a doctor and ask if they think I should still continue forward. I want to--more than anything. I desperately want and need some of this pain to ease up so I can function each day. It affects my mind and my mood and everything else.

So if it isn't an issue.. I still want to do it. I just don't know if a doctor would agree or not.. and want to be sure before putting my body through it.

Yikes. It has been a rough day. I don't know why it isn't until two days before the trial that all these things have come up. It isn't that I haven't been doing tons of research.. it isn't that we haven't made plans for someone to care for me.. but somehow everything just seemed to have fallen through and messed up.. right before it's about to finally happen.

So, I will see what tomorrow brings. I will try to get in touch with a doctor (or nurse or anyone who can help me answer that question)... and see how the meeting goes for my mom.. and I will be praying that everything comes out ok and that I can move forward as planned.

If not... I don't know. I will pray for another option.. another answer to get some relief.

Oh, I almost forgot.. yes Fiona.. I was talking about oral meds. My stomach does not absorb them or break them down and so they have very little (or no) effect on me.. depending on the type. I am on a medicine for PCOS and I take two pills a day and they work perfectly.. but the majority of my meds don't work at all. I guess some medicines absorb faster and there are other factors as to why only a few work and most do not. None of the pain meds I have tried have done anything.. or any of the meds for neuropathy/nerve pain.. which of course is what I need most of all.

I have never tried meds that way, but I really do not see how I physically could do that... I am so limited in how I can move and bend and twist and I just don't imagine being able to do that on a daily (or weekly or whatever it is) basis. I don't know for sure because I haven't tried.. and I don't know totally how it is done... but I am guessing that with the limitations I have, I probably could not do that. Would have to find some place that explains more in detail how it is done.

Sarah, I am so sorry for everything you are going through It hurts my heart to know that you are in so much pain and nothing has been able to help I wrote you a longer message on FB. Whether, you decide to do the trial or not its up to you and you have my support either way! I wish there was more I could do for you but all I can do is send prayers and 's! I do hope you at least get to talk to your doctor about everything that is going on, it seems to me that they would have had to take all your health problems under consideration before they even recommended the trial stim, so maybe they can help you with your concerns and questions and offer some helpful suggestions. Well, take care and I hope that you are able to find something that helps your pain! Love you

Dilaudid suppositories and phenergren suppositories are inserted rectally, usually every 6 hours. Maybe you could have whomever is helping you to the bathroom help you with that. My husband had to do it for me when I was recovering from another totally different surgery I had a year ago and all he did was wear a disposable glove, put it in (using KY jelly) and then throw away the glove. I know it's not the nicest way to take meds. but even today I refuse to take oral meds. and ask for the suppositories every time just due to how much pain relief they give me and their lack of side effects, other than constipation. The medication gets into your system through veins in your rectum so you get much more pain relief as oral meds. have to work their way through your stomach and you often don't get their full benefit (and then there's the side effects of oral meds.).

I would think that if your pain mgmt. dr. knows your current situation and suggested the SCS that he/she already knows you're not going to be doing things during your trial, like shopping etc., but that you'll still be in bed. His/her goal is to reduce pain, not get you up and shopping again. If it turns out that you can resume a normal life somewhere down the road (that's what we're praying for), then they can reprogram the stimulation coverage to help for when you are moving differently or more. The surgery is simply to get the leads into your body and then they can reprogram you for years, if need be.

Other folks have had to be reprogrammed many, many times because they have been fortunate enough to be able to increase their activity as time goes on, so your "maybe, one day" being able to resume some normal activity isn't going to affect the capability of the SCS....they'll just tweak you and help you get better coverage for the areas that are now being used, that hadn't been in the past.

The majority of the pain relief capabilities of the SCS comes after the implant and can be tweaked at any time in the future, so don't worry about needing an additional surgery or revision or anything. Additional surgeries or revisions are for those who've had accidents or done something to cause their leads to move, not because they're more active and need better coverage...that is what "tweaking" is all about...changing our coverage as we change in what we do in life.

Good luck in your decision!!