Spinal Cord Stimulator Problems

What fine print, I don't know about Dee but I was never shown anything and the website is almost useless. I was never told that the leads could break or "fracture". Something to look forward to.

I spent another wonderful day in bed due to pain and I have been trying all day to send out an email for our art league that I am the President. I haven't been able to do any art  because of my pain but I have hope.......

You must not be be on any opiods, I have to have an appointment with me PM before I can get a new perscription. I drive 65 miles, meet with the Dr, pee in a cup, they count the number of pills that I have left and then they give me a physical perscription, then I drive another 65 miles to drop it off at my pharmacist. If I have any days left to wait for the perscription then I have to leave it only to return when it is "legal". I ran into a problem with that last summer when I went to Washington state to visit my mom. I wasn't able to get the perscription before I left and I was gone several weeks. That was a lot of fun.

Dianne

Morning one and all.  Like you Dianne, I don't remember seeing or signing anything having to do with breakage or fractures if leads.  Only that they can float, hence the paddle vs. leads again. 

Last night and this morning have been the pits.  Went to grandsons first track meet ever (he won his first two heats) just thought I would add the only positive for yesterday.  I degressed here.  Had to sit metal bleachers.  Had my pillow for my back to sit on.  I thought I was doing just peachy.  I got, hung onto rail, stepped down with left leg and that was the beginning of the rest of my pain filled evening.  The step down was like two steps, steep.  Walked over to meet hubby and other grandson.  Then we walked back to car.  I had to,stop twice bend over to relieve the back pain.  Held back the tears.  We were supposed to get pizza.  I went straight home and hubby and kids brought it home.  In pj's.  Took my leg meds and then a tizanadine.  Managed to eat, but rest is a blur.  Went to bed at 11 slept all night.  Well this am could not get out of bed.  I panted, deep breathing exercises.  Nothing.  Took 15 mins to get out and stand up.  OMG pain, pain.  Then 5 mins to get to bathroom which is a sneeze away.  All the while the damn pain was coming from side of battery.  I have really have not had much pain there.  I am torn as what to do.  Is it the battery?  Or something else.  Do I call the surgeon or wait to see if tomorrow brings the same.  I could use some opinions here triplets.  So for now recliner with pillow under my knees and just chilling.

I hope you all are having a much better day.

Dee

Dee, I am so sorry, I am just now seeing this post. I actually answered a post by you in another thread. You poor thing I thought that I had bad pain but I think that you win this time except none of us want to win at the worst pain.

How are you doing today, is it still a pain in the a$$? Sorry I couldn't resist, I just hope that it gives you a little smile.  I accidentally backed into the corner of my footboard and it about brought me to tears. It took a couple of days before my behind was't hurting super bad. I think that it is still tender and it seems like it is sticking out a little differently.

Let us know how you are doing,

Dianne

Dee

I just saw these today, now you know what I was complaining about with battery pain.  It's bad, and they sure don't warn you about it pre-op.  I feel so badly for you

Lynn I am so sorry that you are having such problems with your battery. I have been getting some strange pain from my battery, it just started earlier this week. It almost feels like it is sitting on or pinching my sciatia. The battery feels like it is really sticking out and it is really starting to bother me. I go back to my Neurosurgeon on the 22nd, I doubt that he will want to do anything about it.

Lynn what are they going to do about the battery? Have you met with your surgeon, pain management Dr and Rep? Please let us know what is happening. Are you on Facebook? Dee and I have connected on Facebook.

I think that I read somewhere on this website that they were complaining about their battery, it was getting hot and it was really bothering him. He told the surgeon and the Rep and they did nothing. The battery actually exploded in his body and caused a lot of trauma and infection. He then said that they were trying to blame him for what happened. WOW.

Dee, I asked the Rep on Wednesday how many settings that there were and she that there were almost an endless of them. She also said that I shouldn't worry because they wouldn't be giving up because it could be months to get the exact setting. I just don't get it that they are trying to get rid of you, they are in essence stealing from you and your insurance company. Please don't give up, you deserve more from them.

Lynne hang in there of the three of us you have the most knowledge.  I know you will get your battery righted around.  Keep us posted.

I was not able to find anything either (2015) except it should be considered instead of drugs as it was safer in long run..The Doctor never had me in to explain the trial surgery but I had appt with his nurse or so I thought..I asked the nurse what is the worst that can happen she replied "It doesn't work"  I said well OK.. she had me sign a paper.  All of 5minute discussion as I only wanted to know what could happen..This was a Rep and I talked to another nurse on table while being sedated what are risk and she said look it up on their website....The trial surgery was so painful I should have stopped it!  Doc numbed me some more and proceeded but still painful.  I f I had known nerve and tissue damage was a side effect possiblility I would have not done this. Someone needs to regulate how these money making procedures are done!!!! Yes I believe you.  And there is no help afterwards, they just deny you new back problem and leg weakness u never had before is a coincidence!  Bull! 2016 had Medtronic In Virginia(US) 2017 still have same problem and no one listening as PM never had anything in doc report about a problem??

I've learned around 26% of SCS surgeries result in lead fractures and revisions being required. Woohoo hey! Supposed to be when constant repetative movement or accident etc. I was laying on the on the couch as I can't sit at all, and moved forward slightly to pick up my mobile phone in front of me. I'm so sorry to be the one to tell you guys this. I feel awful!

Good Lord this is like you are all in my body.  Yikes.  I can fully understand the frustration as I am in the same boat.  Same but different.

I was not awake for the surgical implant, but hurt like hell when I woke up and tried to lift my arms up.  Today 2mos. Post Op.  I have had after either 5-6 meetings with the rep for programming issues.  NOT WORKING.  That, I can tell you from me as a patient, is something they do not want to here,  My St. Jude's stimulator was done on 3/2 of this year and I have had one day of marked I improvement.

To compound that with my rep telling me in a text, "I have exhausted all that I can do!"  What two months and their towel has been thrown in.  Talk about cutting and run.  No one on the other end, i.e. surgeon, pm rep are living in our bodies and do not know what OUR day to day living is like.

Now mind you, I never expected to be pain free, it would have been welcomed, but unrealistic.  But I was hoping for a modest 30% reduction in pain.  For me it had not happened.  I feel that when we make inquiries, they might consider that complaining, that this not working, it is to the back of the line.

I am not sure what avenues to pursue at this time.  First talk to the surgeon, explain the problem, they maybe able to help.  Ask pm for their input.  Talk to the company, which I have done twice and Inam sure I shall be in contact again.  No one likes bad feedback.

We are all in this together in varying degrees.  We just have to be our OWN advocate.  Good luck.

Lynn

No Lynne you are not missing anything.  For two categories more pain than before implant yes.  Given up on the patient yes from rep.  Now wait to see surgeon and get her input.  But if they can't find a way to get this to do what the trial did.....then. ....yes take it out and leave me to find my own way to help myself.  For those who it is helping, I could not be more happy for all of you.

Dee

Hello Triplets, Lynn the thing is that there is no way in He!! that they have used up all of the settings. According to my Rep last week there is almost an infinite amount of settings, Dee has only had this SCS in for a little over 2 months and 5 program changes, she has an infinite amount less 5 reprograms.

We had excruciating pain when they cut and shaved the bone in the spine, they owe us from going through all of that pain. Please. Dee don't let them dismiss you, fight for your body, fight for all of us. They are just being lazy and don't want to spend the time with you that you deserve. They are selling this product knowing that they do not have enough Reps to cover what they have. The answer is there, just remember how horrendous the pain was just after the surgery, well those reprogrammings do not count because we couldn't figure out what was the old pain and the surgical pain. Now that the surgical pain has subscited they could even go back to the original settings because there is no way that you or they could know if the settings worked or not. Either way you have thousands and thousands of settings that they can try. Perhaps things have moved and that is why it hasn't worked, they might need to look at a x-ray to see how everything looks. My next appointment with my Neurosurgeon on the 22nd I will be getting an x-ray before my appointment to make sure that everything is as it should be.

I need to go, we are going to an outdoor church service in our local park, it is at a Dulcimer festival. I will check in later today.

Hugs to all of us on this journey,

Dianne

I was better off after my first one. I could occasionally leave the house briefly with my Husband and kids. I would flare badly after it but it was so worth it! After my revision surgery after a fractured lead 6 months ago I'm a lot worse off. Now I'm unable to even get up on an elbow when laying (I can't sit) to eat meals. First one was great compared to how I was before it being totally housebound permanently vs being able to go out with my family 4 times a year. To a Mum that's everything! Now I can barely even move. There's something very wrong with this one.

So sad to hear another stoy about your very "popular"problem. Since they got the money they want smiles or you are a problem they don't want. I only had the trial and 1 year later no further ahead. I was a problem from surgical day of trial. My complaints that day or next 2were not even noted. Drs report says everything went fine....My back was welted up, was having pinching at pain at sight,leg weakness and nausea. Docs, rep never noted any of this and I was told they never heard of these symptoms...Severe spasms in following weeks. At one year later leg weakness so bad I can't walk much or stand. I had MRIs but not with contrast. They showed minimal bulging..I am so sad to hear of the treatment you and others have went thru with total implant, but I know what you say is not any exaggeration at all! I pray someone looks into the way these things are pushed and not explaining Before hand the real risks you are facing. I do not consider this minimally invasive surgery at all. Even the trial. Pray you find relief. This should not be considered over pain meds in my opinion. In 18years on morphine I never had these problems!

We are all in this, what I call, sinking boat.  I, like you, can barely walk, sit too long, forget standing and trying to fold laundry or cook dinner.  This is not how my "senior" years was supposed to be.

I see the surgeon next week.  Don't know if the rep will be there.  Actually I don't give a hoot.  From my perspective, it will be a no holds barred event.  My mild mannered husband will be in attendance.  He will let those powers to be know what is like living with me.  Not much fun of late.

I cannot take morphine as it almost killed me in an er visit.  All other narcotic drugs are also a no go.  So I am relagted to only Tylenol.  We all know that doesn't cut this pain one iota.

So we all March on in various modes of movement.  I am sure the company will be hearing from me again.

Good Luck to all.  Kudos to those who are reaping good benefits from their implant.

Even though I was in some bad pain days before I had good days and got a lot done at 62. But I am unable to walk across my yard now. Leg weakness so bad can't stand. This immediately next day after procedure. Plus other things. Pain where lead was in cervical area started on table at procedure and has never stopped. MRI showed nothing so I guess they thought it was in my head cause they didn't know why that would be. Never heard of that!

Anyway, Watch taking too much of the Tylenol though They say" Tylenol"is worse on kidneys than any narcotic..Actually my first pain doc told us that. I loved him and bet he would not have allowed me to end up like I am now. Doctors who care and are not ALL about the money are hard to come across these days. God help us all.Government has their nose in controlling pain meds they need to sniff around the crime in some of our situations . Still upset!

Just caught this post. Still busy chasing answers and just as frustrated! Don't k ow about all cases but in .one doctors I have? been to won't disagree with PM...of course they have in reports sent ahead of me that all went, well, no problems. So .to shows nothing so therefore nothing or nobody else to blame. The person who mentioned going to media had great idea.. This lie so g put out a out mi imal I vasive st

Just got a full page to you delete so this time short...I just came across your post, sorry still busy running to doctors at to no avail. This started out as work comp so maybe that is most of problem. Also just found out the pm docs reports that go ahead of me always, seem to ahead, say procedure went fine and no problems. ..My problems started immediately after trial procedure and I was blowed off. It took care of my hand pain* Could not tolerate it more than 2 days because of the the pinchng red fire pain and I was swollen and red from the tape I guess allergic reaction. It was never mentioned either. To make long story short I know what all these post say are fact and not exaggeration or 'constitutional" issues. I think the post about going to media Souns like good idea ..I know for d

Some it is God send but what about all the broken broken hearted and uni formed a out minimal my I invasive procedures. I know too, that for whatever reasons, lots of people are not informed of all of the things I have heard about? after and with absolutey no followup help or recouse a lot of the time! One person was laying on table I know 70 years old and started hyperventilating S they told her what they were doing g and her blood pressure shot way up and they stopped. How can no one hear about what is going on. In my area one doctor will cover for another. Sounds d fa.iar to anyone. Sorry for the ventilator g. I m not against something that is obvously life changing good for some but that we are being told they are safe for all. More screening g and talk needs to be so excited such as arthritic conditions BEFORE desiding? not after . Once you have a tissue damage, erve damage, bladder issues,

due for trial at the end of January.........was thrilled when I found out about the St Jude devise...after reading all these posts, I'm wondering if I'm doing the right thing....My pain is manageable with the pain pills which I have been taking for about a year. Don't want to rely on pain pills for the rest of my life and over the counter pain meds just don't work.   Sounds like having a caring rep is requirement number 1.  So, are you satisfied with the pain control and side effects? Have read so many negative experiences, I'm wondering if I'm making the right decision.      Any thoughts on this Carol?  

The TRIAL is hell. Worst part. Ya think with our technology they could figure out another way to "test" it out. The trial and surgery are simply uncomparable. Yes, I think there is a connection with your symptoms to the trial. How is that specific combo of symptoms now after having stim implanted?

We are so often ignored. We are pain patients. Unable to be cured. Prescribed meds that become judgements of us. AND we are they ones that MOST OFTEN don't give up. The pain becomes something that feuls us for freedom and release. You can be reassigned reps/techs. Jump chain of command. Call the number on the back of your St Jude DR Burst ID Card. They are their because they give a damn. Not money, power..