[fionab]

Sorry I haven't been able to keep up on everyone's postings. Have gone back on the dilaudid, sigh!! The pain in the upper back/shoulder blades is just too much to handle. I see the pain mgmt. dr. on Weds. so hoping he has some answers on what's up with my cervical SCS.

Just don't understand why the trial went so splendid but not having such good pain relief with the permanent. What's the difference? Is it where they place the leads for the cervical trial...is it in a different place than where they place the leads for the permanent?

When I was last in, they said they could tell by the laptop they hooked me up to that my leads had not migrated and gave me the speech about coverage moving/changing as we heal, etc. etc. Holy cow, it's been six months now. Shouldn't things be settled in by now?

Can you tell I'm getting a little sarcastic here... just have had about enough of it. Have tried turning the thing off but it makes the pain even worse, so I suppose it is helping somewhat. This is NOT what I was expecting/hoping for!!

[Patti_Christmas]

Hi Fiona,

I had a great trial (or so I'm told) that really was one day out of 7 that provided excellent coverage. I was also told that I had a problem with lead migration and it was decided prior to the permanent placement that I would have the "surgical implant" route as opposed to just the lead placement. (This was in July/August of 2010)

In Sept of 2010, my stim was implanted. They either "forgot" or didn't bother with the surgical placement, and I suffered horribly with the stimulation not covering the correct area. I felt the stimulation in my chest, my abdomen and my other leg. The doctors kept insisting that the lead placement hadn't moved, and that it was possibly due to swelling and that I was a slow healer (which is common in RSD patients). Everything that I was suffering from seemed to baffle them, and I too heard the speech. I was seeing the docs and Medtronics Reps weekly for re-programming. For some reason, the stimulation was even making me come up off the table, and would sometimes jolt so painfully that I would loose control of both legs. At this time, my battery (which was protruding out about 1/2") had positioned itself to where it was very hard to communicate with the controller.

At one appointment, my "implant doctor" wasn't in the office and another doctor came in when the rep said that there was a problem. This doctor came in, checked things over and decided I needed another surgery where the leads would be placed by an orthopedic surgeon. It wasn't necessarily that the wires had moved, but more of a problem with the nerves themselves (of course they aren't going to admit to any wrongdoing on their part), and that the battery needed to be moved (duh....).

So, off I went to see an orthopedic surgeon for him to evaluate and get a plan of action. Surgery was scheduled for Dec, and he had planned on placing a paddle, as this would prevent the chest and abdomen sensations, and was a more "direct and stable" contact to the desired nerves.

Well, this was a flop. I was suppose to be able to have the stim on immediately following this surgery, but again I had the sensations in other parts when I would move. It was decided that things were too swollen and that with the swelling, the stim's sensations were being affected. (I also found out that the reason the battery moved in the first place was because the doctor had implanted it under a stretch mark which is a very, very thin unstable location.)

At my 2 week check up with the ortho doctor, it was noted that the swelling was still incredible. I was also experiencing new symptoms of RSD in my back, shoulders, arms and fingers. The doctor told us to contact the pain management doctors immediately (as they would also with their office notes) because this needed to be dealt with as soon as possible because it would be very problematic.

At the pain management clinic I go to, they really don't give you a "set" doctor. My initial doctor though did say it was just swelling and that I had undergone two "tough" surgeries in a short time and to give it some time. I saw another doctor at his office, and he said it might be meds, so he was changing them (changed my vicoprofin to vicodon) and was planning on looking in my Lyrica dosage and then boom - he's out of the country, so I never saw him again, nor did anyone continue with the investigation into my meds. The last doctor I saw there (is the one that is now my assigned doctor) is the one that finally decided the RSD has spread/flared due to the surgeries placing the stim. He is now attempting to treat this with blocks which to date have been ineffective.

I have my stim off again because of chest wall and abdomen sensations. I had to wiggle to get the coverage in the right leg from the day of my implant. One rep said just to pretend I'm trying to tune in a tv with rabbit ears, one rep said absolutely no tuning in and reprogrammed me once again. All this time, I have heard the same thing - "we don't understand what's going on - you had a great trial".

I ask myself all the time - was this "pushed" on me? I should have done more research before agreeing to this, but I was so desperate to have any type of relief, to have some normalcy in my life again that I agreed to it. They kept (and still do) insisting that it will work, I just have to heal. I've questioned and thought about removal, but that's another surgery that I don't need to put myself through at this time. I've even thought that the doctors and reps push this device, sometimes it works - sometimes it doesn't, but in order for their "numbers", does it have to stay in a person for a certain length of time? I know that we are "registered", so does that make their sales look better? Their companies look better even though it isn't working for an individual? Do they "report" the problems or try to get their patients to stick with it so their sales look better? Once they remove a unit after being fully paid for "new equipment" are they able to once again make money for selling a "used" device? Are we truly patients or are we just part of the "numbers" game that keep companies in business?

(Sorry for the rant, I just wanted you to know you aren't alone, and if you have questions, demand answers other then what you are getting! It's your body and this site is much better for answers, questions and research then the doctors, reps, etc)

[Rrae]

Patti thank you for that feedback...... it is very informative and I have actually pointed a new member to this post because she is having issues that kind of remind me of some of the stuff you've described.

My heart is sinking as I ponder the fact that there are quite a few of us who got these implants in about the same proximity......and things were very exciting and wonderful at first.......now it seems that many of us are beginning to have issues arise and frustrations, problems......revisions....new battery because of a faulty one......

I had heard the term "HONEYMOON PERIOD" early on in my seeking out information....and now I'm beginning to comprehend fully of what that means.
I think many of us are facing the unfortunate fact that the 'Honeymoon' is 'over'......
yes, the implants are still helping us......but....not quiiiite what we expected.
And many of us are having a hard time getting decent follow-thru care......
Like what Patti describes.

And OH MY LORD if ANY of these manufacturers even THINK of stooping so low as to put a 'used' unit (one that has been explanted) in to a new patient, I would be literally SICK to my stomach!!
I would assume that any explanted pump would be considered a BIO-Hazard!
This would not only be inhumane,.......but completely ILLEGAL! ....
....right? Mark?.......input?

I'm feeling very down about all this.....I wish I could feel 'happy'.....or ...'funny'...... but I just can't right now.
I'm on the verge of looking in to disability.....and I too am wondering if I have RSD spreading......SOMEthing is not right....

We need to stick together...and work thru this.....

Totally Bummed
Rae

Patti your post is just amazing. Its unbelieveable what you have been though, two surgeries, but still you are not much better.

Have to say I do wonder about your trial too. I had my trial for just 3 days unlike some here who would have had theirs for possibly a week or more. I did find I had relief in those 3 days and that was when it was decided that we go ahead with the permanent implant. But reading your post you say that you had ONEday out of SEVEN!!! now that doesnt sound like a success does it????........you yourself question if it was 'a good trial'.....I wonder if your rant is a bit too close to the truth. Was it a good idea to get the initial implant , but not only that to go and have a SECOND one done too.....its just shocking to think that you are suffering so badly, plus not have the same Dr at each visit....Im sorry for your pain I really am.

I cant imagine what it must be like to have gone through all this and then nothing working properly.....why would the leads migrate unless they arent anchored down properly especially when you say you are so careful.

But its the same old story isnt it.....my battery stopped charging and Im basically being told its MY fault, even though xrays show everything is in its place.....I only had my battery in SIX MONTHS too......its been traumatic and stressful so I can only imagine how you must be feeling too.....



RaeI hope your lift yourself up and get back into your happy mood. I bet that long trip has worn you out too.......

Didnt you have an appointment with your Dr this week/last week?????

When you say you are heading towards disability, what do you mean? do you mean you will have to give up work? just wondering!


I had to take early retirement in July 09 due to my back problem and was 'pensioned' off by the bank I worked for and I also have an Invalidity pension from the Government. Just wondering if thats similiar....

Do hope that you get yourself sorted out soon PLEASE!!!!!!! and bring back our caring sharing loving Rae ya hear

[Mark56]

I just gotta think Frank's Used Medical Implants down on the corner of 6th and Anystreet would never make it past a regulator. Gee, when they removed some of my titanium at one point, they were going to throw it away as a biohazard, but cleaned it up, sealed it in plastic at my request, and allowed me to have the souvenir. AMAZING the size of the screws they stick in there, for sure bigger than a drywall screw.

Patti, Fiona, Rae, I am so filled with sadness at your results...... I know no one promises 100% relief and feels there is triumph if more than 50% relief. It just makes my heart ache for each of you to hear the troubles, the end of the "Honeymoon Period." Makes me for sure feel blessed to have what I have to this point; however, I do wonder now whether there is a sort of a honeymoon going on in my case.

Caring so much for ALL of YOU!!
Mark56 z

[Rrae]

...that I'm a complete WIMP when it comes to pain threshold/tolerance.
Plus, I haven't been swimming in quite awhile (since one of my leads was removed) so, I'm sure the lack of excercise and increase in BT pain meds is contributing to my backsliding.

Mark, you've worked incredibly hard to get where you are....you've remained focused and steadfast as you've gone thru the stages of recouperation and titrating off your meds. You've faithfully followed a PT plan and have never once complained......you always confess that you are blessed.
You are a wonderful SUCCESS story - no two ways about it!
You will remain in your 'honeymoon' for as long as you desire!

I need to grow some b--ls and become more determined in my effort to stay above this battle.
Guess I'm just going thru a pity party or something.....confused as heck tho.
Once I get in with a new spine specialist, hopefully I'll feel more in 'control'.

Well, Jackie I think my issues are very similar to yours......
When I say I think i may be heading for 'disability'.....it's because I am in NO way able to do my work...not with this 'gremlin' in my lower back....sitting on my spine with a chainsaw. I am not able to sit at a desk, not able to stand for very long......and it's as tho my 'working days' seem to be fading right before my eyes......and it's all because of my back, just like you described.
And it seems to be getting worse.

'Early retirement' sounds like the way to go.....I hope/wish/pray that it unfolds this way, rather than me abruptly just coming to an 'end'.... not sure what I mean by that. I'm just not sure of much at all right now.
Just seem to be in a vortex of unanswered questions.

I guess I should be a bit more clear regarding my SCS....
All in all, I AM 'happy' with it. It's just that I have several other pain issues that I seem to be getting slammed with. My unit is doing exactly what it was meant to do, and that is - it covers over the horrible burning neuropathy in my legs.
I don't want to sound as tho I'm a 'failed' SCS..... Not at all.
I am happy with what the little unit is doing.

yep. happy happy happy

[Patti_Christmas]

In regards to my one day of good coverage, the coverage helped tremendously! Never in my wildest dreams did I imagine that I would have to undergo two surgeries and still have the problems because the doctors felt that they "knew" how to place it based on the one day, and they knew that there would be lead migration.

I made it back from my re-programming. It was hard not to harm anyone while waiting because I had to sit for 30 minutes!!!!! They were overbooked, and the chairs are super uncomfortable in the waiting room! It wouldn't have been too bad, but I had overdone it with yesterday's appointment, sitting in the uncomfortable shrink's chair for about an hour and the drive to and from.

My programming went fairly well. The Medtronic rep is trying a few things out to see what is going on. He is concerned that the "mimic" from the stim might not have been the stim, but perhaps the RSD flare, as we know it is affecting my upper back, shoulders, neck and arms. Sadly, when walking, it hits both legs and I'm hoping it's just because I'm not "accustomed" to it, but I've already had to have my husband shut it off as I caught myself on the wall.

While being re-programmed, I didn't have the stim in my chest. I now had to turn it off again because it's back. I am starting to wonder if I am "too jumpy" right now, and all my nerves are messed up. He and I spoke about how after I turn my stim off, that I can feel faint sensations for up to an hour or so after. One rep said that is normal, he is saying that there might be something more to it.

So, here I sit, after spending over an hour at the doctor's office AGAIN only to be out of whack. I will try it in the morning again, but it's too much and makes me feel "wonky" because it's all over.

On a happier note, I got my Compounded Pain Cream, and that helped for about 3 hours!!! The icy numb tingling sensations we all know as RSD is shining once again . This truly is a crappy thing.

[Mark56]

I just want to reach out and help, Patti, but don't know what to do except let you know I care and I have you in my prayers.

Caring,
Mark56z

Originally Posted by Patti_Christmas

In regards to my one day of good coverage, the coverage helped tremendously! Never in my wildest dreams did I imagine that I would have to undergo two surgeries and still have the problems because the doctors felt that they "knew" how to place it based on the one day, and they knew that there would be lead migration.

I made it back from my re-programming. It was hard not to harm anyone while waiting because I had to sit for 30 minutes!!!!! They were overbooked, and the chairs are super uncomfortable in the waiting room! It wouldn't have been too bad, but I had overdone it with yesterday's appointment, sitting in the uncomfortable shrink's chair for about an hour and the drive to and from.

My programming went fairly well. The Medtronic rep is trying a few things out to see what is going on. He is concerned that the "mimic" from the stim might not have been the stim, but perhaps the RSD flare, as we know it is affecting my upper back, shoulders, neck and arms. Sadly, when walking, it hits both legs and I'm hoping it's just because I'm not "accustomed" to it, but I've already had to have my husband shut it off as I caught myself on the wall.

While being re-programmed, I didn't have the stim in my chest. I now had to turn it off again because it's back. I am starting to wonder if I am "too jumpy" right now, and all my nerves are messed up. He and I spoke about how after I turn my stim off, that I can feel faint sensations for up to an hour or so after. One rep said that is normal, he is saying that there might be something more to it.

So, here I sit, after spending over an hour at the doctor's office AGAIN only to be out of whack. I will try it in the morning again, but it's too much and makes me feel "wonky" because it's all over.

On a happier note, I got my Compounded Pain Cream, and that helped for about 3 hours!!! The icy numb tingling sensations we all know as RSD is shining once again . This truly is a crappy thing.

Patti I wish this could be sorted out for you NOW and that you didnt have to sit for sooooo long.
The sensations you mention when you turn off the stim is very similiar to what I get if I turn it off, well I do , when Im recharging.......My Dr did say to me that it was 'normal' to have the sensations after you turn it off as the nerves will still be stimulated for a while..........

I pray it will be sorted out sooner rather than later

Jackie

[fionab]

Originally Posted by Patti_Christmas

Hi Fiona,

I had a great trial (or so I'm told) that really was one day out of 7 that provided excellent coverage. I was also told that I had a problem with lead migration and it was decided prior to the permanent placement that I would have the "surgical implant" route as opposed to just the lead placement. (This was in July/August of 2010)

In Sept of 2010, my stim was implanted. They either "forgot" or didn't bother with the surgical placement, and I suffered horribly with the stimulation not covering the correct area. I felt the stimulation in my chest, my abdomen and my other leg. The doctors kept insisting that the lead placement hadn't moved, and that it was possibly due to swelling and that I was a slow healer (which is common in RSD patients). Everything that I was suffering from seemed to baffle them, and I too heard the speech. I was seeing the docs and Medtronics Reps weekly for re-programming. For some reason, the stimulation was even making me come up off the table, and would sometimes jolt so painfully that I would loose control of both legs. At this time, my battery (which was protruding out about 1/2") had positioned itself to where it was very hard to communicate with the controller.

At one appointment, my "implant doctor" wasn't in the office and another doctor came in when the rep said that there was a problem. This doctor came in, checked things over and decided I needed another surgery where the leads would be placed by an orthopedic surgeon. It wasn't necessarily that the wires had moved, but more of a problem with the nerves themselves (of course they aren't going to admit to any wrongdoing on their part), and that the battery needed to be moved (duh....).

So, off I went to see an orthopedic surgeon for him to evaluate and get a plan of action. Surgery was scheduled for Dec, and he had planned on placing a paddle, as this would prevent the chest and abdomen sensations, and was a more "direct and stable" contact to the desired nerves.

Well, this was a flop. I was suppose to be able to have the stim on immediately following this surgery, but again I had the sensations in other parts when I would move. It was decided that things were too swollen and that with the swelling, the stim's sensations were being affected. (I also found out that the reason the battery moved in the first place was because the doctor had implanted it under a stretch mark which is a very, very thin unstable location.)

At my 2 week check up with the ortho doctor, it was noted that the swelling was still incredible. I was also experiencing new symptoms of RSD in my back, shoulders, arms and fingers. The doctor told us to contact the pain management doctors immediately (as they would also with their office notes) because this needed to be dealt with as soon as possible because it would be very problematic.

At the pain management clinic I go to, they really don't give you a "set" doctor. My initial doctor though did say it was just swelling and that I had undergone two "tough" surgeries in a short time and to give it some time. I saw another doctor at his office, and he said it might be meds, so he was changing them (changed my vicoprofin to vicodon) and was planning on looking in my Lyrica dosage and then boom - he's out of the country, so I never saw him again, nor did anyone continue with the investigation into my meds. The last doctor I saw there (is the one that is now my assigned doctor) is the one that finally decided the RSD has spread/flared due to the surgeries placing the stim. He is now attempting to treat this with blocks which to date have been ineffective.

I have my stim off again because of chest wall and abdomen sensations. I had to wiggle to get the coverage in the right leg from the day of my implant. One rep said just to pretend I'm trying to tune in a tv with rabbit ears, one rep said absolutely no tuning in and reprogrammed me once again. All this time, I have heard the same thing - "we don't understand what's going on - you had a great trial".

I ask myself all the time - was this "pushed" on me? I should have done more research before agreeing to this, but I was so desperate to have any type of relief, to have some normalcy in my life again that I agreed to it. They kept (and still do) insisting that it will work, I just have to heal. I've questioned and thought about removal, but that's another surgery that I don't need to put myself through at this time. I've even thought that the doctors and reps push this device, sometimes it works - sometimes it doesn't, but in order for their "numbers", does it have to stay in a person for a certain length of time? I know that we are "registered", so does that make their sales look better? Their companies look better even though it isn't working for an individual? Do they "report" the problems or try to get their patients to stick with it so their sales look better? Once they remove a unit after being fully paid for "new equipment" are they able to once again make money for selling a "used" device? Are we truly patients or are we just part of the "numbers" game that keep companies in business?

(Sorry for the rant, I just wanted you to know you aren't alone, and if you have questions, demand answers other then what you are getting! It's your body and this site is much better for answers, questions and research then the doctors, reps, etc)

So sorry you've had to go through so much. I'm sure you feel like you've been going through the mill with all this and then to be batted back and forth between doctors who don't agree with one another only adds to the frustration and feelings of "what the heck???!!!" I'll post at the end of this thread as to what happened to me at my dr. appt. yest. Keep hanging in there and hope you find relief and some answers. Ever think about changing doctors?