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 :)

Prayers for you.....
 

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
:hug:

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 :hug:

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! :mad:

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.

I am so sorry
 

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 :hug::hug::hug:'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 :hug:

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!! :hug:

Sarah you have gotten to this stage ie, waiting for the trial because you have been to your Pain Doctor and had your psych evaluation and everyone was in agreement that it was time that you could progress for the SCS. Im sure all of the above situations that you are currently experiencing have been taken into consideration and thats why it has been suggested to you. I know you are in constant pain and perhaps the SCS will be able to help with some of this pain. It wont help with the pooling in your legs etc but it could help with some of the constant pain you have even if you are in bed and immobile.
I would have thought that the hospital that you attend wouldnt let you go home if you dont have anyone there to help you out. I know you say that you arent comfortable with someone else, apart from your mum, to help you but surely if you were living alone for example they wouldnt let you home unless you had some home help. Well I know thats what happens here in Ireland. People would be sent to a convalescent home(nursing home) to help with your recovery. Thus leaving your mum to do her own thing while you recover. I am mobile but not as active as some of the people on here. I dont do all the normal activities I used to do on a daily basis either due to my pain etc. But the SCS helps me somewhat. It hasnt completely helped all my pain. I still have the pain in my bad and the heaviness I feel there too. The pains in my legs are still there when I go walking. But there is a certain amount of relief I get from the SCS. Its not always enough but at times, like when Im lying down, the sensation makes me feel relaxed and good.
So if everyone has been pointing you in the direction of the SCS, ie your doctors etc, then do try the trial, see if it works, get on to your insurance people or even the hospital, and see if anyone can come up with a solution as to how you might cope if left on your own all day, is there anyone who might help you from the hospital point of view.
I do hope that something comes up for you and that you can progress. Im sure you would want to know if it works anyway. And then if it does you will know that at least going ahead with the implant will provide some kind of pain relief and thats a step in the right direction, isnt it.

Good luck with whatever you decide;)

I can't afford staying in a hospital just to be taken care of.. just like I can't afford to have someone come into my home and help take care of me. That's why we had planned that between my mom and a few friends that everything would work out. And it was all set... until this stuff happened with my mom at work.

We are waiting to hear back from the surgeon's office.. we told them that I really want to move forward with this.. but that we just want to be sure that it is okay if I am not able to get up and move around a lot. The activity log that people are supposed to fill out during the trial is supposed to list how much the pain eased up while doing daily activities. In my case the only activity would be getting up to go to the bathroom. So we just want to make sure it is ok.. I would think that since my pain management doctor has suggested this and okayed it.. that it would be.. but nowhere along the way has anyone said that may be an issue. It never came up until yesterday.. and I want to know that it is still okay to go forward. The nurse is going to talk to the surgeon and get back to us.

My mom is at her meeting at work right now.. so I'm hoping that something good comes out of it and they can find a solution. Her boss seriously treats her horribly and I think that if they truly knew every detail, my mom's boss would either be reprimanded or lose her job. But, for now I am just hoping that something can be worked out.. not just for my sake but for my mom as well.. she has an incredible amount of stress from work that she does not deserve and does not need to deal with right now. It would be different if it was her fault.. but her boss just flips out and will yell at her for 20 minutes straight over something that has nothing to do with my mom at all. She's put up with it for many years.. but right now with everything she is going through, she really doesn't need all of this. I will be curious to see how the meeting goes.

I am really hoping that the surgeon says that it is fine to go ahead and do this tomorrow... it really is the last option I have for pain relief.. and if it doesn't happen, I have no idea what I will do.

Today is one of those horrible pain days when I just want to sleep my life away because the only time I don't feel the pain is when I am sound asleep. I hate these days... I hate feeling like I am wasting my life away just to deal with the pain. So... I'm hoping for a positive outcome. I should know in a couple of hours.

My mom's meeting went well. The lady at HR said that as long as she has the time built up, her boss is not allowed to act this way and not let her take it.. or demand that she find someone to cover the office every minute she is gone.

So, my mom is supposed to go back to her office, type up a list of suggestions to give to her boss of who they could hire to answer the phones and things if my mom is gone (people from a local service that works to get adults with developmental or other disabilities back in the work force, student help, retired faculty that may agree to come back and help out for a time period, etc.)

My mom is free to take her vacation time to take care of me.. and if her counselor will sign a note saying that my mom needs to take time off for -herself-, then she is free to take sick leave, even if it also to help me.

So that is all taken care of. I know her boss isn't going to like it and will probably take it out on my mom... but at least my mom knows that her job is protected and that she cannot lose her job for taking time off. :)

Just waiting to hear back from the doctor's office... glad things are working themselves out! I hope the last piece of the puzzles works out, too.

Well, the nurse called at 4:50 and said that the surgeon would prefer to discuss this during my appointment Thursday. Ugh.. that isn't going to work! I need to know -before- I go through the trial if I can still be doing this.

She apologized and said she totally misunderstood and did not realize we needed an answer today. Since it took all day for her to get back to us, it was already too late to try to ask anyone else.

Tomorrow morning we are going to try to reach my pain management doctor and see if he thinks it is okay to go through with it even if I cannot be active during the trial... it would seem as if he should already know my situation and wouldn't have taken this route if it wasn't ok--but I need to make sure. He never once said that during the trial people are supposed to be as active as possible to see how much it helps.

So... as of right now the plan is to just go... and hope that we don't have to cancel it a minute before it happens. My pain management doctor can be pretty hard to reach, though, so I am not confident that we will be able to get a hold of him in time. I just really don't want to go through the trial and then have a doctor say "wait--you shouldn't be doing this because you are stuck in bed and you will not get an accurate picture of how much it helps."

So who knows. I guess I will find out for sure tomorrow morning... or at least I hope I will... :confused:

Alright, the decision has been made.

It's on!!! We're doing this. No turning back.

Let go and let God.

Will be in touch to let you know how it goes... if I am not able to comfortably get on the computer during the trial, I will have my mom help me get a message to Tara on Facebook and hopefully she would be so kind as to give an update. But I'm hoping that I am feeling up to doing that myself! So we will see!

In a way, this has all kind of been a blessing... because I've been trying to work all this out and find out what to do.... I haven't had time to really be nervous since in my mind, it may not be happening.

Now that it is, I am getting nervous--eek! But I know it will be okay.. God is in control. :)

Love you guys--thanks for all your love, prayers, and support. :grouphug:

I joined the board yesterday and have been looking for something on Spinal Cord Stimulators ... I'm with you all the way .. sending positive, happy, smiley vibes .. we're all with you!

Hi Saffy :)

Welcome to this fabulous board. Ive just noticed you dont live too far from me, I live in Dublin Ireland. A lot of the posters here are from the USA. All VERY friendly and supportive. You will find lots and lots of information about the SPinal Cord Stimulator here. There are lots of people who have the SCS a couple of years, months and even weeks.....so you will get a broad view. Are you planning on having the Spinal Cord Stimulator implanted. I had mine done just over 11 weeks ago after 5 years of lower pain/leg pain. Its giving me about 50% relief, which is great. Please read all the threads even the older ones, because believe me there is great reading to be had;)


Sarah thats fantastic news that you finally got the go ahead. Wishing you the very best of Irish luck for a safe and successful trial and a speedy recovery too. Take care and when you can keep us all updated:hug:

Yup .. it looks like I am going to have to put aside a whole day to read through all the posts .. good stuff!

Yes am definitely going to go ahead with the trial (am worried about the Consultant Physcologist appointment I have to say). The main thing is, I would like to cut down on my pain meds more than anything .. I feel like they are controlling my life. Ok, they are keeping the pain at a reasonable level, but they are so messing with my head. (This is one of my good days!)

As soon as I read Sarah's post ... then looked at the calendar .. erk .. somehow it seemed I was meant to find my way here.

We went to Dublin on a cheap flights .. thank you Mr. Ryanair .. and had a lovely stay of two nights .. took the dart up to Howth for some Fish and Chips .. mmm mmmmm .. and went to Gallagher's Boxty House where I have to say the food was superb!

GOOD LUCK SARAH!! :hug:

Hi All
Don't know yet why i am posting here , i dont know if i need advice, support or an ear or maybe all of the above.
I am living in Ireland and my story is i fell 2.5 years ago when i was 28 weeks pregnant, I damaged disc in my back , broke my arm and tore my hamstring. after 10 weeks in hospital and baby born by csection i tried to recover, my arm healed well but i have been left walking with a crutch unable to lean on my leg from the pain, burning swelling etc and dreadful back pain. i have had many blocks and rhysotomy ( spelling) and last week having spent the summer with my leg in full cast as it was contracting constantly I was diagnosed with crps in my leg. Dr wants me to have a scs fitted and I am due to see psycologist next monday and the trial has been booked for 2nd of december and if this goes to plan full implant a week later.
I have two young kids and a great hubby can anyone tell me what to expect the week of the trial and the weeks after the full implant. would i be ok by xmas?. now i am glad that i have finally been diagnosed after 2 years of being made to think it was all in my head and it was only down to a new pt sending me to the right dr that i got a diagnosis. he did iso kinetic testing on my leg and i got the results of an 85 year old. the pain dr did bone scan, sweat test and sensitivity test and he could not believe i had not been diagnosed sooner as all my symtoms suggested that this would be the problem.
For the last 2.5 years i have fought for my life like most people i was so active before this with full time job kids hubby and fab life. now i am just a spectator unable to do much i still work 2 days a week, have been doing a degree through distance learning for last 2 years also but unable to do much with kids so alot falls on my hubbies lap. god i am rambling but i suppose i am wondering what i have to look forward too? dr thinks i will b 50% better but most things i read suggest that this is not true. how painful is this procedure ?
any comments would be appreciated :)

hi familyhealy1
 

Hi Familyhealy1

Welcome to this wonderful site. You have definitely come to the right place.

Firstly may I say welcome to a fellow Irish woman;) I am from Dublin Ireland.

Im sorry to read your post about how you have been dealing with this pain for so long and having a young family to cope with too.
Having the trial is to confirm that this is the right way for you to go and hopefully you will get relief from this and continue on to the full implant.
The Psychological appointment is straight forward really. Its just to make sure that you ARE suffering with this pain :rolleyes:as if you werent already, but that there are no underlying conditions ie, depression. You will be asked a range of questions about yourself, your family, how you feel, your expectations, your limitations, basically to get a full profile of how you are today and what you want from this SCS(spinal cord stimulator). Its not a CURE but its there to help you manage the pain. There are some on here who have great relief and are getting back into activities that they thought were going to always be a distant memory.
The trial itself is a bit uncomfortable. Are you having the leads/paddles put in? If its the leads then you will be numbed up and will be slightly sedated. Once the lead is fed throught into place its then turned on, which is attached to an outer battery that you carry around with you for the trial. This is when you will tell your doctor where you feel the sensations etc.
Once its in, it can be a bit uncomfortable for a day or so but overall not bad at all. I did find that once it was out I was SOOO looking forward to the actual permanent implant. Unfortunately mine took bout 4 months as my Consultant went on holiday and he also wanted to wait 6 weeks in order to have the site heal fully before he preceded.
When the day comes for your implant, again if its the leads, you will be given some light sedation and be numbed up again. Then the leads will be inserted, like in the trial, and you will be able to tell where you feel the sensations.
After the operation it can be quite uncomfortable and sore. Im not sure if you have had operations but if you have well the pain is quite similiar. Its very painful around the incision sites and you will have some inflammation. But you will also be given some pain relief too. I was in hospital for 3 days overall. Its now 12 weeks tomorrow since my implant and I would say Im just about coming back to myself again. Now after the operation for about 3 weeks I was VERY sore and at times uncomfortable but that did subside. You will be able to read lots of different posts from others here who went through the same and their experiences. Also a couple have had the actual paddles implanted which is a bit different, again you will find the threads for this too.
Ive the ANS SCS implanted, do you know which one you are getting?
One of the most important things to remember is that you cannot BEND, STRETCH, LIFT, TWIST for at least 6/8 weeks....so that will be hard having a young family. But this is to make sure that the leads dont move which would be awful after going through so much to get them there in the first place.
Im sure you Doctor has been through the whole thing with you anyway.


I have been suffering with Failed Back Syndrome for the past 5 1/2 years and after having 4 surgeries I have now been implanted with the SCS since August 5 2010. I have lower back and both legs with pain and burning/stabbing also. I find the SCS is good for the legs but not so much for my back at present, but then it does take some months for the leads to scar in which eventually once they have and dont move about Im hoping that I can be reprogrammed to cover all areas that I need. But I would say I have at least 50% relief at present, which is better than nothing. I too worked but had to give it up. But Im starting to get out walking again which is great.

Do you mind me asking you where you attend? I am with the Pain Clinic in the Mater Private.

I hope this has been of some benefit to you and please if you have any questions do feel free to ask. Also the stickie at the top of the page is great for information too.

Take care

Jackie :)

Report on Sarah
 

Hi, everyone, I am just putting in an update about Sarah. She left me a message last night and said that it went okay and that was at home trying to rest. She said that her back was really sore but she was starting to feel the tingling. I got that message late last night, so haven't gotten a new report for today yet. I did tell her to try to sleep on her side (thats what I did during my trial)to help with the back pain. Anyway, everyone just please say prayers and send happy thoughts her way that the stim works for her :) I will let you all know when I hear from her again. Take care and have a great day:hug:'sTara

[QUOTE=jackiekennedy;709183]Hi Familyhealy1

thank you so much for your response jackie! i am attending st v.....nts private and under o k..fe . your answers really have helped me but can you advise do you have to stay in hospital after full implant? i did not think i had to but maybe i need to call and ask this question again. its a meditronic unit that he said would be placed in. I am happy that i would only have to wait a week if this is what would work on the pain. right now i have spent a week in preety bad pain my pelvis has started to really hurt and i dont know whehter that this is the crps spreading but this pain burns so bad and i really cant stand up this week. i dread totally going from sitting to standing as the pain is excrusiting ( sorry spelling again) . my gp has been great has supported me from start to finish and never once looked at me like i was imaging it or that it was in my head he just stuck with me but he is away this week so dont know what to do as pain is really bad.
when i said in my post i have continued working i do very little my work lets me work from home both those two days but this week i cant imagine being able to do it but then feel so guilty if i have to call in sick. I have tried so much not to take too much pain relief , trying to be a martyr but i think i am lossing this battle. i was in college yesterday and had to leave as i could take no more. can the weather make crps worse as i would say my pain level has been increasing for the last 6 weeks or so but definately a 10 for the last week. sorry for rambling but i really dont have anyone to ask these questions 2 and appreciate your response jackie

[QUOTE=familyhealy1;709199]Ive heard of your doctor, my is F Ch***bers. He is very good. I stayed in hospital one night when I went for the actual trial. I had the procedure done in the pm and then the next morning I had the rep come and programme the device. Then I was sent home. I only had the trial from Wed til Fri as it was taken out then. But immediately I had it turned on I felt so much more relaxed. I know exactly how you feel when you say you have burning. I have that all the time and its excruciating at times. Well this definitely has helped me there. Especially in bed at night, I would have to put my leg in and out of the bed , but this makes it more relaxed :)
As regards the actual permanent implant I was in hospital from Wed thru to Saturday. But as it turned out I should only have been in hospital for 2 nights, administration error brought me in on Wed:eek:but op didnt take place til Thurs pm. So I was fuming. Last place I want to be is more hospitals. I was also screened for MRSA while I was there before the operation. As regards being a martyr DONT!!! honestly if you have some pain relief take it because I find that when Im in pain it just wears me down. Hopefully you will get relief from the SCS and in time wont need any. BUt really being in pain is awful, as you are well aware, if its that bad , well if it was me, I certainly would prefer to be some pain free than none at all. My Doctor is big into reducing pain relief if and when he can. I was on Lyrica and was a total nut case so he said to come off it. Im still on some meds and hopefully will try to get rid of them as soon as I can. Im hoping in another few months at least. Well I was told to expect at least a year for a total recovery and also the leads to scar in.
If you need anymore info dont hesitate to ask. Im here most days as I dont do much:rolleyes:my children (4) are all grown up, my youngest is just 18 so Ive LOADS of time. So I can only imagine how you must feel with your young family. So ask whatever you need ok :)

Jackie :)

Hope Sarah your doing well
 

Thanks Tara....I hope Sarah that you are doing well and when you get the chance you can update us all on how you are doing. Take care:hug:

[QUOTE=jackiekennedy;709242]thanks again Jackie for your quick responsei have made appointment to see stand in gp tomorrow so hopefully he will come up with a plan to get me through next few weeks. Can i ask another question Jackie? i also suffer from facet joint syndrome due to the fall now pain dr said this initial scs will only help with my leg not my back can you tell me can these scs devises help with lower back pain? i am going away next week hubby arranged a week away in lanzarote (without kids) so i am hoping the heat will make these pains settle down. I really am glad i found this site tried to log onto the chronic pain ireland site but you can't register to become a member and this was the only site i found with active posts about scs and crps... thank you for the time you have given me your recovery has given me hope i do think i am in alot of denial with this pain. i try to be wonder woman 2 kids , job , college but i thhink everything is coming to an end as i am at a brick wall now unable to even get to standing position but having played the game of i will not give in for so long i dont know how to now say help me please!! today i think i could have cut out my pelvis if it was possible as i cant breathe with the pain as it seems even to hurt when i breath in and out. ok sorry here i go again moaning but i am in such dreadful pain and so tired from this pain.

Great news!
 

I have another update from Sarah, she is doing great :) The stim has been helping with her neuropathy pain and the pain in her feet! She is doing so good and really is excited about having the surgery to get a permanent one. She also said she is 100 percent pain free except for the back (because of the wires and such). I am so happy that this has helped her and I am so proud of her for going through with it :) I just wanted to share this with all of you because I am really happy for her and this is a very big blessing :) That's all the news that I know for now, if I find out anything new I will send out another update! Have a great night :):hug:'sTara

Sending you prayers and positive healing energy Sarah.
Bless you for the update tchr .
PEACE
BMW

Tara--Thank you -so so so- much for updating everyone for me. Feel free to continue to do so... whatever you see in my status updates or in messages to you (related to this, anyway...) :hug:

I am going to post the big update I am putting in my CaringBridge.. but it took over 7 hours to write it, so that's why I am just posting this one. It is very difficult to comfortably type, so I don't plan on doing a lot of it. Plus, I have appointments the next two days (an hour each way... so 4 hours in the car plus the appointment times).

:grouphug: for you all! :)

So, here's my big old update... and then if Tara wants to update you she can.. or I will be back when I am in less pain. My back sure is hurting bad.. went to the ER today (advice of my doctor)... this will explain all that:

Just wanted to do another quick update here because last night I was exhausted and just wanted everyone to know I was home.

First I wanted to say... the first day that I saw the fall colored leaves, I also saw the snow fall... do you know how weird that feels? The leaves changed many days before today, but today is the first time I saw it... and then today was the first day it snowed and I saw that, too. How weird it is to feel summer and then the next time I go outside, feel snow and see fall... it messes with my mind!

Here's a bit more information.

All of the steps before the procedure went well. We made it to see the doctor... just spent about 5 minutes with him, so it felt a bit pointless as all he did really was tell me what the procedure would be like--and I was already very very aware.

So after we got done there, we headed right over to the new surgery center. We got there before noon and my procedure wasn't scheduled to start until 1:30, so there was a lot of time to sit around and wait. Thankfully, they got me into my recovery room right away so I could sit and relax in the recliner type chair instead of a waiting room chair or my wheelchair.

It was one person after another after another coming in.. I lost track after the first three or four people. A nurse, an anesthesiologist, a nurse anesthetist the Medtronic rep, another nurse... who knows! I remember some names (Sarah, Melissa, Chad, Scott, Mike, Jim, Dr. L, Dr. M...) but couldn't really tell you who did what... except Mike was the Medtronic rep. and obviously I knew the doctor who was doing the trial.

I wasn't really nervous before that point--not much anyway. Because I didn't know for sure until almost midnight that it was going to happen, I didn't have time to worry. I was feeling worried on the car ride, but I just closed my eyes and focused on the music (Brian Littrell's CD--very good).

So then, as I was sitting in the room, around 1:05, I started to get nervous. The only thing I was really afraid of was the shot in my back, which if you've known me or been reading this a while, is one of my biggest fears.

My mom came and sat close to me and held my hand and wiped away my tears... :)

Then before I knew it, it was time to go... so off I went into the OR.

When I got in the room, I had to climb up these two steps and try to position myself on my stomach on the table... yeah, right. It was really hard since I couldn't let my toes touch anything. But eventually I got it.. and they put pillows under my knees and legs to keep my toes from touching the table.. :)

So then they started... Scott had said that he had given me some meds through the IV and that I should start to feel a bit sleepy.. and that when it was all over, I wouldn't remember this part. Ummm yeah right. I don't think they gave me enough of the sedation. I felt everything and it was so incredibly painful. I was crying because it hurt so badly and apparently I was moving too much and they weren't able to do what they needed. So they gave me a bit more of whatever sedates me.

After that point I don't remember anything until I woke up in recovery.. so I sure wish they would have given me the higher dose from the start.. it was one of the most painful things I've ever felt... and I wasn't supposed to be so alert during it.
So I was moved from recovery into my room... and they brought me some apple juice, water, and crackers. I ate some crackers and drank a bit of juice.

The rep from Medtronic came back in (he was there during surgery and I also had met him before surgery). He showed me how to use the remote and all of that... he said that during surgery, he had it all the way up to 10 (or whatever the highest is..) and that I still was not feeling tingling. He said sometimes that happens, and with my numbness in my feet, it made sense.

So it was very difficult to find the right settings.. eventually I started to feel something... It didn't take long for him to explain everything... then he asked if I had questions and went on his way...

My mom asked the nurse when she came in how soon I could leave, and she sounded a bit surprised and said that I could go whenever... it sounded like it was unusual to leave so quickly... but I don't know for sure. So I changed into my clothes and slowly got ready to leave. The car ride home was pretty painful.

I got home and just wanted to rest. I was exhausted all day even though I had slept the night before. So I laid down and slept for around 4 hours. I got up and ate a bit and checked my e-mail and then went back to sleep.

I sleep on my back these days.. I used to toss and turn and roll from front to back and back to front all night.. but because my toes are the most sensitive part of my body, I can't lay on my stomach anymore. So usually I lay on my back. But when I took the nap when I got home, I laid on my back and OWWW!!! It made it hurt worse. So I laid on my side. I laid on my left side for most of the night, but woke up in a ton of pain around 5. I switched to the other side and went back to sleep.

So today I woke up and was hoping to feel much better (as far as my back goes), but no such luck. I really struggled this morning to do anything like sit up and go to the bathroom. My mom had some things that she needed to do this afternoon, but before she left I wanted her to look at my back because it was really hurting and I was afraid it was infected or something. It isn't just sore like on the inside.. but was very tender to touch and things. So my mom looked at it, and it was bleeding. She called the doctor's office and they said that it shouldn't be bleeding and that we either needed to go to their office (which would be an hour there and an hour home in addition to the time it took to address the problem) or go to the ER in town. So off to the ER we went. Luckily, they found out that it was not currently bleeding from the incision sites... what probably happened is that the blood had pooled underneath the dressing and then I moved or the cord attached to the leads got moved a bit and whatever blood had been held there started to ooze out of the dressing. So luckily they were able to clean it up and put clean dressing on it, and it should not happen again. They said more blood may come out that has been sitting inside.. but that is normal and should just form a scab. So, the only time we should be worried (as far as the bleeding goes) is if it oozes out from under the new dressing.. because they added a lot more than what the surgery center did and so it should hold all the blood that would come out... so unless it gets to the outer edges of this new dressing, then we are okay. It is still hurting badly, but my mom said it looks good.

So I got home and changed clothes... and then Michele came to stay with me while my mom left. June had come to stay with me originally for a few hours, but then we ended up going to the ER so that didn't happen. She was here for a short time, though. So Michele came to stay and my mom took Kado to the vet. He was just there a week ago, but his eye wasn't looking any better to us. Apparently the vet thinks it is getting better so I guess that's good--but I don't see it. He still keeps it mostly closed and walks around like it is hurting him badly.

Then my mom went to her counseling appointment. My mom is actually taking some time off work. She is going back in January for the spring semester... but is taking the next couple of months off. We are all dealing with a lot right now... this trial and then the permanent surgery (if they do it, which I don't know why they wouldn't) are coming up for me. My mom is doing 10 hours of counseling a week and working on some financial issues... there's just a lot going on. So the HR department at her work said that as long as she has the time built up, that she can take it off.

I am hoping that I can sleep on my back tonight. It is really painful to be laying propped up like I am now (with a big foam wedge and then two pillows to prop me up enough to type). This position is always harder on my back than lying flat because it puts a lot of pressure on my back. I'm hoping that tonight I can just lay flat--that would help me to sleep a lot better. I don't sleep well if I am forced into a position that I am not comfortable in.

I can't believe that I was just thinking about finishing this entry and I haven't even shared the best news of all! My pain in my feet is totally GONE! The stimulator covers it all... I cannot tell you the last time I have not had extreme pain in my feet. It is wonderful. =) It's a bit hard to truly focus on that right now because I am hurting so badly in my back... but in time that will all heal and hopefully if I get to do the permanent surgery then once that heals (because that will be a more invasive and much more painful surgery), I will be left with a whole lot less pain than I am used to. Even if it isn't always 100%... I will take what I can get. I will be so sad on Friday when they take this out of me... I know it is going to be very painful... I just hope it doesn't take a long time before I can move forward with the permanent surgery.

I have been living off of cereal since surgery, so I am going to eat some real supper and then try to get comfortable until I can get all of my meds down. So, here's my long update (that has taken me over 7 hours to write--don't think I could sit and write all this at once.. in too much pain to do that). I will try to update when I know more, depending on how I feel. I have my appointment with the neurosurgeon (who would do the permanent implant) and then have my follow up with the guy who did the surgery yesterday on Friday. Hopefully tomorrow I will know more about if this is going to be a permanent thing or not! I'm off to rest now.. chances are, I will respond to a text much faster than any communication online.. at least until I am more mobile and unhooked from all of this.

Yayyy Sarah!
 

Thank you so much for the update!
I am so very VERY excited to hear that you are already getting this much relief in your feet! Absolutely AMAZING!! :Head-Spin:

Your incision pain should start to ease up in the next day or so and you'll be able to concentrate more on the pain relief in your feet/legs....! I am just so happy for you I can't get this cheezy grin off my face :D

God is so Good!

Try to get the rest you need and update when you are feeling up for it
:grouphug:

Rae
:hug:

Hi Sarah
 

So glad that you are getting some relief from the trial. Great news. Yes its a bit sore and Im sure you will want to go ahead if its this good, but you know the pain is minimal compared to the REAL pain that you are experiencing every day. Hope you continue to get relief :) Take care

((Sarah)) that's amazingly good news!! I'm so happy about the pain levels! It's so nice when you suddenly have pain relief! Days without pain are such a blessing.

Anytime you have an invasion of your body (surgery) there is bound to be new pain. It's just always such a shock to suddenly have that extra pain there and can get scary and frustrating!

I'm so excited for you. Take good care of yourself. :hug:

Thank you so much for the update .. am really happy that things have gone well and that you have relief at long last!

Thinking of you Sarah
 

:hug:Sarah, welcome back :) I am so glad that things have improved so much because of the stim! I am sorry about your pain and trip to the ER though, I hate going to the ER. I am also sorry that your back is still very sore. Good luck at your appointment with neuro tomorrow, I will be thinking of you while I am getting my ct's done ;) I am perfectly happy with you updating the group instead of me, although if it gets to the case you can't share, than I can always pass along messages for you. I am so excited for you and I also hope that mine is scheduled pretty soon too because I just want it done and for things to work right again ;) Like I said, we get to be surgery buddies yay :) I have a lot of stuff to take care of today so I will talk to you later. I am so proud of you and have HUGE faith that your pain is going to keep getting better :) Take care.:hug::hug::hug: Love you lots, Tara

Sarah....
 

I've been thinking about you lots!
Hope things are going ok!
http://dl.glitter-graphics.net/pub/3...wi5bc7nl1r.gif.....I know that's easier said than done :), but at least relax by knowing that your quality of life is on the mend my dear friend!
Put ice packs on the incisions for 15 or 20 minutes (I like those gel packs best).......
I have a good feeling you're going to be amazed! Try not to get discouraged during the pain from the procedure......do your best to relax into it, and center in on the fact that the pain in your feet won't be your constant unwelcome companion!
Amen!
:hug:
Rae

Rrae
hi and thank you for the private message you sent me, don't know how to respond to these yet but i guess i will become an expert soon enough. went to my gp's today and thank fully he gave me some new pain relief as i was unable to even sit or stand this morning. they are fentanyl patches and they really have calmed down the pain so hopefully i might get a decent nights sleep tonight. It is great as you said to speak to people and get support from people who are going through the same stuff . and Jackie has been great with her advice and it is good to speak to another irish person about it as they know the system here. The gp does think the crps is in my pelvis now which has made things difficult with dealing with the kids but my husband is great and so is the creshe so am making it through. the phsyicatrist is on monday which i am a bit scared of but as dr said i have managed to keep it together for 2.5 years so i can make it through another month. thank you again for your kind words i have seen a few of your posts on the different threads and it sounds to me that you are a great friend to many and give support to so many people. I hope you are doing well also,
jenna

Hi Jenna
 

Hi Jenna

Good to hear you got some pain relief today. I used Lidoderm patches (lignucaine). I found them to be 'ok' so I hope you get great reief from them. Don't worry too much bout Monday. I firmly believe that the dr knows even before he sends the patient whether they will be ok or not. I'm sure all will be fine. Keep us updated and good luck too.

Jackie :)

Heyy Jenna!
 

I'm a big fan of the Fentanyl patches. They are heavy duty narcotic pain med, but they get the job done......I used them on a regular basis (the highest dose!) until I got the SCS......It was nice to not have to take pills all the time. I hope you fare well with the patches. They take some getting used to.
We should start a whole new thread of your very own! Do you know how to start a new thread? Well, I'll just take it upon myself to do it for you! That way, we'll be able to help follow you along as your procedure unfolds, without having to search thru different threads.
When you first log in to the SCS forum, up top on the left side is a feature that allows you to start a new thread (as opposed to adding posts on to other threads.) You deserve a thread of your very own!......I mean reallY! You've come ALLLLL the way from IRELAND!! :rolleyes: ...... your arms must be SO TIRED from the swim!! harhar :o ok that was incredibly corny.

It's so good to have you!
Rae
:hug:

Very short update as I am headed to bed.

Went to meet the surgeon today for the permanent surgery. It was a different guy than the one who did the trial. Made it an hour there and an hour back, and even was able to walk around the mall for almost an hour-searched for (and found) a winter coat and gloves and a scarf! :)

I haven't walked that long since April when I was student teaching. :) It was pretty crazy.

Then we grabbed some lunch and headed home.

Feet are still doing well... but my back is still hurting lots. It is better today then it was yesterday, of course, but is still acting up quite a bit. I can't get relief for it because I can't put hot or cold on it, can't absorb the pain meds, and nothing else will help. So I just wait for it to heal.

The trial comes out tomorrow--then the pain will start back up.

So we tried to find out when the next surgery would be, but we aren't totally sure yet. They have to wait to hear back from my insurance and then they can set up the date. Hopefully it will be sometime around the 8th-10th of November... unless something else comes up. So, we'll see.

Tomorrow I go back (have to be there by 10:30) to have this one taken out. So then all these restrictions will be gone, though I am sure I will still feel the pain.

Okay, I am off to bed. Goodnight all--thanks for your notes, prayers, and thoughts. :)

How you doin dear Sarah?
 

Holding my breath waiting to hear how you are today......

My eyes POPPED when I read that you were able to walk around the mall for an HOUR!!! :yikes: incredible!!

I pray you are getting relief from the pain your body has been thru!
Stay Strong!
:hug:

Well done Sarah
 

Well it sounds as if this trial is the business for you Sarah. To walk is amazing especially when you have been bedridden for so long. Fantastic news. So you see when it works it REALLY works...and hopefully anyone else going for the trial, like Jenna, will have the same results and on their way to the permanent implant!

You go girl:)