This is my story the truth and nothing but

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NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/4/2011 11:02 AM (GMT -6)   
I have waited to assure i would no be judged. I will try to keep it short as possible. 1989 i injured my back on the job, went to er later that evening was told pulled muscle. ok flexril and percocets prescribed. i was on workmans comp for 7 days, i was in training for the job and could not let it go it paid so much more than my previous admin. jobs. This is a local 2 county job of installing, new or existing sewer and water mains it paid well had great btakenefits and i had 2 small children to house and feed by myself. at first i only got pain meds maybe every 6 months or so. flash forward to approx.1993 or 94 and i had been red flaged by the doctor i was seeing, thankfully i had his partner whom i changed to my primary care.  this man sent me to every specialist he could think of physical theraphy, neurosurgeons, acupuncture, etc. the neurosurgeons told me to lose weight and excercise, at that time i was 5'9 and weighed 150. by 1996 i had a full blown addition to opiates, my meds were gone 2 weeks after filling them. in 1996 my father passed after a long illness, my mother and i were already at odds and had been for years. my dad was not the best dad but he was mine.  november 1996 approx 5-6 months after he passed i stuck a hype in my filled with heroin and thought i had gone to heaven, this was the beginning of a nightmare. i managed to kick the heroin due to my kids finding hypes hidden in my room.  i never told my pc doctor, what happened was i ran out of meds, money and got on a methadone clinic. i was on this clinic 2 weeks.  still never told my doc truth but got him to prescribe methadone. from that time early 1998 i had the least amount of pain i ever experienced. july 1998 saw neurosur. advised me that i had waited to long and gave me a 50-50 chance of recovery from a lumbar laminictomy.  this failed,by dec. 1999 i could work no more.  received ssi in 2001. now i have as of 4 years ago taken control of pm, had a problem with xanax or benzos period. stopped taking all 4 years ago. i finally got towhere i want to be it would take to long to tell everyone how many bozo pm docs. i am staying with this doctor, i dont have any bad feeling toward him medtronics is my frustration.  but be sure this to will pass. gentle hugs to all happy mon. it going to be 78 here today sooooo happy 

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16773
   Posted 4/4/2011 6:30 PM (GMT -6)   
NiNi53, this forum is not in place to pass judgment on anyone. Thank goodness your children were able to step in and help get you back on your feet. It is your choice on how much you share with your drs. I do know some drs will work with a patient that has addiction tendancies in the past. But, it is a matter of finding one that will do this and not be judgmental at the same time. You have been red flagged and know what that is all about.

I am having some brain fog, if I remember correctly, your SCS unit is not working is that correct? The dr you see now, is he the one that implanted your unit or was it another dr? I do know if the units are implanted too deep they will not work. Did you go back thru the search here at the forum and find the post I told about on the fella that has a unit that has not worked right since it was implanted and he found out he cannot sue the manufacturer as there is a clause on this type of thing? There is quite a bit of info on these units here at the forum.

Take care.
Moderator Chronic Pain Forum

JCG32
Regular Member


Date Joined Dec 2010
Total Posts : 62
   Posted 4/5/2011 4:50 AM (GMT -6)   
I think one of the great things among many of forums like this is that their is no judgement. We all relate in one way or another regardless of how or why are pain started.
Thank you for sharing and I hope you can find a pain relief that works. Yeah for nice weather. Here in FL we are going into what I call our "winter". Very hot and humid.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/5/2011 5:39 AM (GMT -6)   
Thank you for being brave enough to share - not everyone would, for exactly the reasons you've mentioned. But like the other two have said there is no judgement here.

Hoping that today is a good one for you *gentle hugs*
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/5/2011 8:16 AM (GMT -6)   
thankyou straydog, JCG32, crpspatient, and pebbles225, Straydog yes i looked at the site u sent me to and did find it very helpful.  the history i explained is well behind me now. thI see my pmdoc tomorrow, i do once a month visits to get the prescriptions i need.  yes the doctor who did the implant is still my doctor, look unlike several doctors, neurosurgeons in particular have a god complex.  my doctor made a mistake, it is not life or death mistake.  as i read thru the many postings u suggested straydog.  i really like my doctor, i am 57  soon to be 58, the thought of looking for another pm doctors scares me.  i have much more harsh and blame the manufactuer of the units.  maybe thats just my way of dealing its easier to blame metronics then my doctor, the reps in the office remind me of used cars salesman, make a sale no matter the cost to the patient.  Ultimitley the blame lays with me i never researched the cost of the unit, how well this unit worked for others. my fear of rejection from my doctor, which is in my head not from any threats.  i have made my decision not to attempted to recharge the unit, its only frustrates me and keeps my angry. im tired of being angry i am letting go and moving on, it is springtime in md. and the cherry blossums and getting ready to bloom i live less than 10 miles from Washington, D.C. i am ready to let go and live.  this decision was made by me after feedback people on chronic pain forum. i dont mean to get mushy, but even after i first joined not long ago, i found home bless all and soft hugs and a ton of graditude.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16773
   Posted 4/5/2011 10:41 AM (GMT -6)   
We all understand the frustrations you speak of when dealing with CP. It is great that you like your dr, that is half the battle. My prior PM dr was wonderful, could not ask for a better dr in the bedside manner dept, but other than great bedside manners, he was way out of his league and should have stuck with anesthesiology, not pain mgt. As a matter of fact, he did exactly this a couple of years ago. That wonderful bedside manner of his caused a lot of his patients a lot of problems that could have been avoided. Don't let yourself ever get caught in that type of trap and it is real easy to do. I was one of them and I could kick myself to this day for falling for it because I know better.

Personally, I don't think the SCS Units are cracked up to be what they claim. We have been seeing a bit of a pattern develop with people that have them and after having them a few years they are not performing anything like they were in the beginning. Some have said they wished now they had not had them implanted. I blame the drs every bit as much as the mfg because its the drs that are pushing them as the next best thing since sliced bread in treating CP. Suddenly the patient has trouble with the unit and thr dr automatically blames the representative, well, if the good ole dr had done his homework about these things and took the time to become educated about them, then he could help his patient instead of passing the buck. This happens with the pain pumps too. Its a real money maker for the drs but it is thr patient that ends up paying the price.

I think its disgusting for a patient to go thru the surgery like you did all for nothing.But, like you said, we as patients also have to educate ourselves about this sort of thing because we look at it with a different set of eyes and our opinions are not as biased as the drs and the mgfs.

Enjoy the cherry blossoms.
Moderator Chronic Pain Forum

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 4/6/2011 12:28 AM (GMT -6)   
I had a discussion on another forum about the push from doctors and the push from patients in getting a spinal cord stimulator or a pain pump instead of fixing the mechanical problem.

We all came to the conclusion that the fault lies with the sales representatives, with the doctors who either threaten patients, misrepresent what the units can do, or sell them to patients as a means to avoid surgery, which is the current trend and finally with the patients who are too eager for a quick fix, rather than repairing the actual problem, want to circumvent surgery altogether to their detriment.
 
Some PM doctors are pushing the units onto patients who are weeks out of a surgery or as a means to avoid surgery altogether. Some are threatening patients that if they don't go ahead with a trial and implant, they will not prescribe pain medications any longer. If a patient is threatened with that, they need to file a report with their county's medical board. It's unethical for any physician to do that.  They make a lot of money from doing both the trial and the permanent implant, as well as any revisions that might be done, and battery changes, etc.
 
Not all of the units fail, for the right patient, selected with the right criteria, at the right time in the protocals for spine injury, they are a good treatment option.

But for someone looking to avoid having surgery when there is a structural problem, it is not going to work, in the short term or the long term. For someone who is taking a ton of medication and is looking for a means to stop taking pain medications, it probably isn't going to work, and for someone who gets less than the standard of 50% relief in their daily pain levels, it isn't going to work. And that will result in a bunch of failed stimulator implants, which in the long term can destroy the efficacy studies of scs, and result in insurance companies not wanting to pay for them, as we are seeing already in some cases.
 
The company reps are in it for the money- plain and simple. It's how they make their income- selling those units and servicing them. They will tell the patient who is looking into a scs as many lies as they feel they need to to get you to trial a unit. Once you trial it, even if it does not meet the standard of care- 50% or greater reduction in your daily pain levels- they will tell you that once the permanent leads are placed, you will get better relief, when that doesn't work, they will tell you once the leads are scarred in, it will be better, they will tell a patient who has greater back pain than nerve pain that it will cover their low back pain and it is not approved for that. In fact, in most instances it will not cover low back pain......period. If someone happens to get some stimulation in the low back, it is because of the patients anatomy,  the position of the leads and the program, not because the unit is designed for that to happen. It is rare for low back pain to be covered with a spinal cord stimulator.

There is a standard of care when it comes to spine patients, and it is there for a reason.

First, you try PT for several weeks, then anti inflammatory medications and more PT, then exams and consults with surgeons, to rule in or out mechanical problems. Followed by imaging studies as necessary, emgs and test injections to see if they can relieve some of the pain, if not all, low dose oral pain medications and nerve pain medications....then surgery enters the picture......followed by more PT/rehab, long acting pain medications, and breakthrough if needed, more nerve pain medications, and when you are reach high doses or the meds are no longer effective, then the scs should enter the picture, not before and finally the pain pump.

Skipping any of those steps, except in emergencies, is going to result in a failure, either because the mechanical issue isn't fixed, and / failure to use the right treatment at the right time.

I learned a hard lesson in my own pain journey. When I first injured my back, I thought that I knew what a 10 on the pain scale was- and I did, it was my worst imaginable pain (at that time in my life), then each time my back went out again, I learned a new 10, when my discs herniated, I learned yet again another new 10- that one had me crying in my sleep, then post op from my first back surgery, I developed a whole new appreciation for a 10 on the pain scale- that one I thought would kill me, literally......since then, I have developed a few other new appreciations for 10 .
 
What I am saying by all of this, is that as our conditions deteriorate, we learn what we once believed whole heartedly was a 10 is now a 5, or less because that 10 - the worst pain imaginable has evolved while our conditions are worsening.

I look at pain management as a journey, not a destination- I want to save the big guns, scs and pain pumps for when my 10's evolve yet again, as I'm sure they will in the next 10 years or so....

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16773
   Posted 4/6/2011 1:30 PM (GMT -6)   
Very well said Sandi. I have to agree with you that too many people see these devices as a quick fix, when there is no quick fix. The mfg's and drs make a killing off of implants of the devices and they will lie to you about what they can do or cannot do. I barely remember meeting my rep, it happened as I was being wheeled into surgery and I could no more tell you today who that person was from the man in the moon.

People with pumps do not have the need to see a rep like the SCS implants. I really wish there was stricter guidelines in place for drs in the education dept of these devices. There are too many drs out there recommending these implants and the drs have no formal education to back up handling a patient with these devices. They attend a seminar and suddenly they are qualified to make the recommendation, thats wrong.

I found out the hard way that my dr was not qualified to handle a pump patient and I paid dearly for his ignorance. I always say the best thing that ever happened to me and 45 other patients was when he quit PM and went back to being an anesthesiologist. I truly hope he does that job better than he did handling pump patients too. At one year post-op I had decided I had made a mistake getting the pump and I was ready for it to be taken out. I hung in there and now have a dr that knows them like the back of her hand which has made all the difference in the world for me. But, the damage that is permanent & cannot be reversed was a high price to paid for his ignorance.

I don't think we can ever get it across to others enough that educating yourself about your condition is one of the most important things you can do for yourself. It needs to be the same when looking for a dr and also on his recommendations. It can really save a person a lot of grief later on down the road.
Moderator Chronic Pain Forum

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 4/6/2011 3:53 PM (GMT -6)   
Sandi,
Do you mean to say that there are states that allow SCS reps to interact with patients BEFORE they get their implant? Wow! In IL that's practically forbidden. Certainly can't happen without a doctor present in the room. Ooooohhhh, that would make me mad having to face salespeople in my doctor's office when I'm sick or in pain.

In defense of the reps, though. I have worked in sales myself. Yes, the goal of any sales person is to sell products; I don't fault the SCS reps for promoting their product. I will be the first to agree, though, that somehow (I have my suspicions) this crazy misconception has spread that SCS's are the miracle cure for just about any pain anyone could have. They're not all bad & not every rep tells lies. In fact, many don't. The literature from BS I got says 25% reduction in pain is considered a "success" and that seems like a fair assessment to me. Many people are genuinely helped by the units. I was one of them for about 5 years. Yes, I am quite disappointed that it now doesn't hold a charge for more than a few hours. I sure wish I knew that going into the procedure, but I'm not sure I'd change my mind about it. I made the best decision I could at the time. Surgery was not a good option then & it's still not a good option for me today. So, I'm stuck with icky meds until I see an improvement in the SCS's & get my battery replaced. Oh well.

Guess I just wanted to offer a flip side opinion on the reps. They get a lot of flack, but they're not all bad & are not always deserving of the blame we place on them. Doctors have a role to play in determining what is the medically best option for their patients. Surgeons have an obligation to learn & practice how to do the procedure. And we patients have an obligation not to be too quickly drawn into the emotional pitches that these SCS's are the greatest invention in all mankind. They have their place. They're not for everybody. What a tough balancing act (as if we don't have enough to deal with already).


Nini,
Glad to hear you have benefited from HW. I know I have as well. Happy early b-day if I don't have a chance to wish you that on the actual day. :)

peace,
T

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 4/6/2011 7:38 PM (GMT -6)   
Hi T,
Yes, in a lot of states, the rep will be there for the consult. There was one there when I went for mine. In fact, between the lies I was told by the doctor about the scs and the lack of answers and outright lies about low back pain coverage that I was told by the rep, I decided not to go down that road, just yet. And when I do, it won't be with that surgeon or that rep.

I am not saying that all reps lie, but there are enough out there that do, that it gives them a bad name. I know that there are honest, hard working reps that work for medical device companies and don't want to be dishonest with the patients they encounter.

The standard of care for scs is a reduction of 50% or more in normal daily pain levels, anything less than that is not considered a successful trial by their own literature. I did some reading on BS website in the medical areas and their own paperwork says a successful trial is 50% or more reduction. I did notice that they removed that number from the patient area though. By all rights, they should not have implanted the unit, but could have offered another trial with a different lead configuration if you wanted to go down that road again. If you are happy with the pain relief, then I am not one to say otherwise.

There are many doctors, PM's and others who are marketing these things as the best thing since sliced bread and they can be, for the right patient, at the right time during their treatment protocal. But I have a huge problem with them being sold as the way to stop taking pain medications, when the reality is that most scs are still taking some level of narcotic pain medications after implant for years afterward, not just in the short term. I also have a huge problem with them being marketed to patients who really do need surgery but they are told by some doctor or worst yet, a recommendation from a patient that they can avoid surgery if they get one implanted, and then can't figure out why it failed.....when these things are implanted, they are set to deal with the level of pain that you currently have......despite the settings available on these things, there are only so many configurations and settings that the patient can choose from, sooner or later, they are not going to cover the mechanical pain any more- now they either need a revision to get a new stimulator and leads or they will further complicate any spinal surgery because of the wires and scar tissue that is present.
I am not saying that the scs and the pain pump don't have their place in the scheme of treatments available for pain, because they certainly do....they are the two last frontiers as it were- after all of the other lesser modalities have been tried, with little to no success. Then it is time to take the risk of scs or pain pumps.....patients shouldn't be led to or allowed to jump from point A in their journey's to point Z without traveling through the rest of the alphabet first.....that's all I am saying.
There are far too many ramifications for the doctors, the patients, and the efficacy of these last resort treatments when the waters get muddied by taking short cuts.
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