Spinal Cord Stimulator Problems

I thought all SCSs are rechargeable.  I was railroaded into. Boston Scientific SCS June 2014.   I never got not much coverage on right side.  Neuro refused to do corrective surgery.  Now the battery has moved over my spine and hurts.  Rep suggested padding the area which is really stupid since when wearing DDS back brace the padding causes more pressure on the spine.

i have seen another neurosurgeon who order CT scan and was shocked to find I   have acquired scoliosis with stress fractures.  I believe was I allowed the simple corrective surgery in 2014 I would not be in this shape.   For years I was told the SCS just needs more and more reprogramming.   

The whole SCS industry IMO is a giant rip off.  I am bed, wheelchair, couch bound now having been put on a drug called Levorphanol, rarely prescribed.  I am being treated like a lab rat.

currenly I wait for an MRI of one specific area which is possible with Boston Scientific SCS.   

I am so sorry you hurt, it’s exhausting.

Your story is pretty discouraging in a way that I'm going to try to get a new unit to replace what I consider a defective one. I'm sure it's not going to be easy, but I think I have no other choice, except to remove the unit. Why should I have an implanted device that doesn't work in my body. I also have a Pacemaker/ICD so the frequencies this works at won't interfer with the ICD. I have a Tens unit, but have been told not to use it because it could trip the ICD, which would be a very painful experience to say the least. I look at your situation and think maybe I'm fortunate that I'm not bed ridden and have to use a wheel chair. God bless you.

I am so sorry to hear about your problems.  I joined this site because of my father.  Why does the temporary unit they used work so well and the St. Jude stimulator implant does not?  With the temporary unit my father was like a kid again.  Before that he had to use a riding lawnmower to get from the house to his garage and then with the temporary unit he could he could walk almost anywhere he wanted.  He even came over to my house and did some minor repair work for us.  He had the St. Jude stimulator placed in December and it is not working at all.  My parents are not ones to complain so my youngest brother and I are the ones making the phone calls to the reps.  He has had the unit reprogrammed many times.  I think one of the problems is that the reps keep changing.  The last rep told him that the unit would work for him "if he kept an open mind."  I am just furious.  If I come across any helpful information I will gladly pass it along and I would appreciate the same from everyone. 

Hi Alan, I’ve had the St.Jude Burst SCS since June 2017. It has made a big difference in my life. I’m now able to stand and cook and clean. My back does not like vacuuming though. (But I try). In the beginning I had shocks from the battery. Also getting used to the battery was a bit much. I figured it had to stabilize in the pocket the surgeon made in my back. I have neuropathy in my foot but the SCS doesn’t help there. I guess I’m lucky that it worked out well for me. I wish you blessings and more pain free days. 

That is true Beth Ann that the temporary unit was a miracle. I felt so good after failed back surgery in 2012. It took time for me, as I mentioned, to get used to the SCS. At times I was so discouraged but I did probably lower my expectations a bit. I can stand now for a bit but then have to lay down for a while. I hope your Dad gets better relief. 

I love the comment from the rep "if he kept an open mind". These reps must have gone to school to come up with excuses. My rep told me and my wife "that psychologically, some people think that nothing will ever work for them". I had the same experience as your father, test unit gave me a substantial amount of relief, but them implanted one has done virtually nothing. I saw the doctor today and he is going to re-arrange the leads as soon as he gets approval from Medicare, and can schedule an operating room. He told me that it might work for me. Oh brother, I sure hope so!

Curious...during your trial did you have the two leads.  Then when trial was over what was put in permanently.  

I had the leads during the trial and they were successful.  But the permanent implant was the paddle.  Never achieved pain relief and 7 mos.to the day had it removed.  Would be interested to know if they were the same.  I found there, for me was a difference between the two leads, success, then paddle, no success.   Is difference.

Good luck in finding pain relief.  Keep us posted.

Now I'm curious too! During the trial they did put in a couple of metal wires that were coated, kind of like the same thing they wire houses with. Now, I have what you describe as paddles. They look completely different. I believe they are some kind of metal, maybe stainless steel. I'm seeing the doctor again tomorrow for some kind of special epidural that I haven't had before. He is still going to operate on me again to move the "leads" around. I'm guessing he's talking about the leads from the unit to the paddles. I'll have a few questions for him tomorrow!!! Thanks for replying to me. This may wind up being successful, but I don't think he would ever remove the paddles because originally they were stitched in and scar tissue would have completely imbedded them. What are you doing for pain relief now? I still have to take pills with this ineffective unit implanted in my back.

Alan unfortunately nothing.  I am allergic to all pain meds.  Lots of Tylenol which does not help.  I don’t know what I am going to do going from this point on.  The paddles were removed. No issue removing all of it.  I sure hope the epidural helps.  Just frustrating.  *sigh*

Good Luck

Dee

Well, I saw my doctor today (Friday, June 15, 201) and he gave me two shots of a steroid, one on each side of S-1, the vertebrae beneath L-5.  I lived in Florida for several years and had several full epidurals.  I felt like a new person.  I had a large yard, about an acre, and with lots of hard work, my wife and I really whipped that yard into shape!  Eventually though, after moving to California, I went to a doctor to have another epidural and I had nothing but pain.  After a little research, I found that epidurals do have their limitations; they stop working.  I've had two more by another doctor with the same results.  I printed out a couple of replies I've received on the forum from people that have had the exact same results I had with the trial and then the permanent implant did not work.  I didn't include the names of the people or the address of the forum to insure privacy.  I gave them to my doctor today and asked him to read them when he had time.  He looked briefly at them and then showed me a model spine with leads running in and around the vertebrae.  When I saw this I told him the rep showed me a picture of my back, which looked entirely different than the lead wires. The picture the rep showed me had two pieces of metal about two and a half inches in width and a length of about sixteen to eighteen inches.  I will see him in a week for a follow up and we will clear things up at that time.  I believe those two pieces of metal are called paddles.  So, confusion still reigns.  I hate to mention this, and I don't know where you live, but people have told me to try marijuana that has been baked into cookies or brownies.  Although medical marijuana has been legal in California and a few other states for a few years, now recreational marijuana is legal here and in a few other states.  I don't condone the recreational use of marijuana because it will be just as bad as having more drunk drivers on the road.  I'll admit, when I was in the Army, I did partake of it with some of my buddies, but after my honorable discharge, I never smoked it again.  I've had this back problem since 1971, when I was injured in the line of duty as a firefighter in a large East coast city.  Yes, I've  suffered with this for 47 years, which makes me an "old" guy 72 in first week of July.  I've taken various medications, all prescribed by doctor for all of that time beginning with Ascodene, valium, Lortabs, Tylenol 3, Vicodin, MS Contin, Oxycontin, etc.  I have not enjoyed any of those pills and have never abused them.  If they are unable to get that neuro spine stimulator work, I may have to try the marijuana.  Oxycontin is now very difficult for the doctors to prescribe, but I continue to use Hydrocodone a generic muscle relaxer with three Tylenol capsules.  The doctor has also cut back on the Hydrocodone since it's also an opioid.  I'll also have the spinal stimulator removed.  Why have something in my body that doesn't work?  What if that battery starts leaking after a few years?

In your case you may want to try the marijuana. I wouldn't recommend smoking it though as it has plenty of natural chemicals just like tobacco that are released into your body when burned. You are in a real quandary as to what you can do to relieve some of that pain.

God bless you Dee,

Alan

Good good Morning and Happy Father’s Day.  I was smiling as I read what you wrote.  It was like I was reliving conversations about medical marijuana.  It has become legal in New York where I live.  I am if a generation where drugs are frowned upon always.  Never did anything growing up.  Never had the desire to even try marijuana.  Just had this talk with my daughter whom I shall paraphrase, “Mom get over it already,”. LOL. My son in law totally gets where I am coming from.  He is a retired Marine and has many brothers, some of whom I have had the privilege of meeting in our home, tried to e plain to my daughter that it is hard for me to just jump right I to using.  Am looking for a new pain mgmt. Dr. to take a look at my newest MRI and give second opinion.

Back to marijuana, I am rethinking my stance.  There are no opioids that I can take without serious side effects.  Not worth it.  Have been using CBD oil without THC.  Been doing research on my own.  Good grief a lot to learn.  Thought maybe  CBD oil with some THC might help.  Now to find it is another question.  The Drs. that can facilitate for you is prohibitively expensive.  Not a road I can travel.  So searching for a combo of treatments.   Alan I sure hope you get more relief with your epidural injections and glad you have a doc who hasn’t given up helping.

I am a firm believer that  when one door closes another one opens.  Haha that’s me looking for that open door.

Thank you for your service and God Bless you too Alan.

Dee

Thank you for the Father's Day wishes, and thanking me for my service to our country.  Father's day came with beautiful weather out here, and my wife made it a very special day for me.

Oh wow.  You and I are on the same track.  You must be from the same generation I am.  Regarding Marijuana,  I had never done anything like that and had no real knowledge of it.  I thought it was the same thing as using heroin.  Well, after my Army buddies gave me an article from Time magazine, I reconsidered my thoughts about that issue and decided to try it.  I got out of the Army in 1968 and never tried it again.  My understanding is that we were smoking the leaves of the plant.  Now, most of the available stuff is from the buds on the plant, so it is much stronger. I've only spoken with one person about the medicinal use of it and he said it was very helpful to him.  I used to smoke and drink alcohol, but stopped both many years ago for the sake of my health.  Then I learned how much the alcohol relieved my pain, but I definitely will not go back to it!  I've spoken with my wife about using THC, and her reply was "not in this house".  Oh well, I can understand her reluctance.  She's a terrific wife and also a retired nurse.  I'll get back with you on what I find out Friday.

God bless,

alan

 

The injections I had on Friday had some influence on the pain until late yesterday when it was back in full force.  I look forward to meeting with my doctor on Friday to find out exactly what was implanted in my back, besides the neurotransmitter.  The picture the rep from St. Jude showed me looks entirely different from what the doctor thinks he implanted.  It's either the leads or the paddles.

I've tried the CBD oil without THC, but I didn't notice any effects on my level of pain.  The oil with THC might be a different story.  The doctors that can point you in the right direction are unreasonably expensive.  In one way you could perhaps think of them as being involved in the THC industry.  Also, I believe the products themselves are expensive may be very expensive.  I'm definitely willing to wait to see if the doctor and St. Jude rep are capable of getting this device to work. 

You have a very positive attitude, and that helps.  I agree that when one door closes another one opens, but only if you are willing to listen carefully.  By listen I mean to the Spirit.  I'm a Christian and do believe what I have just said.  This has happened to me at a few very important junctions in my life.  I believe there is a way to be relieved of this pain, but we will have to continue to search until we find it.

 

I'm back again after a few weeks of confusion.  The picture the St. Jude rep had on her phone was not me.  I had asked her, when I saw the picture, if that was me.  She replied yes.  I spoke with my doctor and he said he had implanted two tubes along with the permanent unit.  He showed me a model of a spine and put two of these tubes over it to demonstrate what he had done.  I asked if these were "leads" and he replied "yes".  So, I don't have paddles installed.  These tubes have a wire inside of them with several "components" attached.

That's about it for now.  He has scheduled me for surgery on August 10th, and I'll let all of you know the results. The St. Jude rep will reprogram the unit, so it may take some time to tell if this procedure worked.  I've got my fingers crossed.