New and needs suggestions...

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New Member

Date Joined Aug 2010
Total Posts : 9
   Posted 8/31/2010 8:47 AM (GMT -6)   
I am new to this tyoe of thing, but not new to Chronic Back Pain. Currently to date I have had 5 surgeries, and several medications and narcodics. None of which have even come close to remotely reducing the pain. I have a stim implanted, last January it stopped working. they said the leads have failed, but the battery was fine. So after yet another surgery they replaced the battery. Well I had stimulation after that but only on one lead. Now three months later it still is not working right. I am back on the narcodics which really brings me down. I know I don't have the pain that some people with Cancer do, and I know other people are in pain as well. But this has been going on for more then 10 years, with more ups and downs then driveing through the rockies. Early mornings (3 AM) and early evening ( 5 PM) are the worst times for me. I don't know which way to turn. Doctors want me to take more drugs, but I say no and put up with the pain. I am hoping someone out there has suggestions of something that has helped them that I can tell my doctor. He is good, but new to this type of pain. Fresh out of the Navy at Walter Reed, so I feel he knows a thing or two. Maybe! Any suggestions at this time would be welcome.


(Mikeyd, I added a subject to your post so more people will find you and help with ideas.)

Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 8/31/2010 9:07 AM (GMT -6)   


   Hello Mikeyd!

     Welcome to the HealingWell Chronic Pain forum! You will really enjoy the members here, as they are very helpful.

   It looks like you have been through the ringer, with all of the surgery's you have had. I'm not an expert on the implants, but there are a few members here who have delt with them.

  I might suggest that you post a little more information about yourself, so that the members can better direct you and or answer you're questions.

  What type of system was implanted (who was the maker)? When you first had the implant, did it help you? What types of pain meds are you on, and the dosage? Are you going to a PM or a PCD? So sorry for all the questions, but someone is going to ask them here sooner or later.

  I'm sure there will be a member here before long to better answer your questions.

  Again, Welcome to the forum! wink

   Take care!

     SE smilewinkgrin

Monty's Mom
Veteran Member

Date Joined Aug 2010
Total Posts : 664
   Posted 8/31/2010 9:23 AM (GMT -6)   
Welcome to the forum! You will find many members here are compassionate and caring and very able to answer your questions. I am happy you found your way here, but also very sorry for the reason you needed to find us. SE is right, you have been through quite a lot at this point. I have no experience with stimulators, but there are quite a few who may know some information to help you.
I have the same issues with meds that you do. I hate the way they make me feel and having to take them, so would push through the pain. Some of the other members may agree that everyone haas different ways to cope and medicine isnt for everyone. Please do not feel bad if you need to take narcotics for pain managment. They at times are a necessary thing. At this point I am using a fentanyl pain patch, and having to step up dose by dose until I get relief. I have high sensitivity to medications with lots of lovely side effects. Can you feel my sarcasm? It took me a long time to over come my aversion to pain medications, now, things are a little better. It has been a slow process for me.
I am glad you found us, and hope you find the answer you seek here. If nothing else, we can be a wonderful source of comfort and information for you!
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw

Pelvic adhesive disease, Irritable bowel syndrome, SI joint pain, 7 pelvic surgeries for pain, ovarian cysts, adhesions, and a kidney stone! Wait, future medial transcriptionist I must say ureteral calculus!

New Member

Date Joined Aug 2010
Total Posts : 9
   Posted 8/31/2010 10:13 AM (GMT -6)   
Thanks SE and Mindy it is very comforting that there are others out there that have and maybe still are going through what I have and still am. 
Well lets see, was diagnosed with Degenertive Disk Diaese in 2000, then come to find out that L4 had blown, but they thought they could remove part of it that was causing my pain.  Okay strike one, 2001 after several injections into a disk that would not hold the medication they decided that a fusion of L4 - S1 would be my best bang for the buck.  Recovery from that was very long and painful, he ordered no therapy just walking, and in WI in the winter one does not get out much.  From day one told him that it felt like there was a golf ball in my back.  Oh that will go away, he said.  Made it very uncomfortable to sit or lay down.  But anyway, after 4 more years of pain I just couldn't take it any more.  Now keep in mind I loved to downhill ski, water ski, boating, hunting, hiking and anything out doors.  Oh ya and was terminated from my job because of the fusion surgery, they were affraid I would not come out of it I guess.  15 years as a fire investigator for insurance companies and that is what I get! 
So I go back to this doctor, sorry there is nothing I can do, go see a pain management doc.  Okay, he says the only reason he said that was he screwed up and didn't want to face it.  Whatever!  So he starts me out on Vacidin, 6 up to 8 a day.  No releif.  Okay lets try injections, 5 of those and no relief.  Well lets put in a Medtronic Neurostimulator.  Actually worked for a year, then one day it decides to go crazy on me, you should have seen the look on the ladys face that was a customer of mine at a car repair shop.  I started dancing around and trying to find my remote to shut it down.  So I go in, it fell out of synic was there answer.  Two days later in the hosptial with a morphine drip, and back spasms like no tomorrow.  Lost four days from my memory don't remember anything that occured.  So back on Vicidian, some muscle relaxants (cant rember the name).  And go on living with the pain and the fact that there is nothing to do, the fusion surgery injured, stretched out the nerves and nothing can be done.  Drugs and drugs.  Have been on Fetenal patches, oxycodone, morphine, oxycoton, methadone,flexeril, solpiden, gabapentin, valium, percocet, sorry that is all I can remember off the top of my head.  Plus using the Medtronic stimulator. 
As of today, like I said the stim failed the first of this year, still on oxycodone, fetenal.  Only one of the leads are working and still is over stimulating me.  I am 50 years old, I was very active.  I loved watching my hometown high school football games.  But cant sit that long.  I have developed pain in my legs more so in the left, feels like a charlie horse.  I am in central time zone, in beautiful northern WI.  Medtronics is saying as long as one lead is working you will be fine!!???  I have a new doc, from the navy, and Walter Reed in DC.  Is he good, not so far, but like I said is new to patients with this kinda pain.  Blew his mind that my pain level day to day is a 9.  All I want is to have a normal day without any pain, some days I don't think so, but looking at this forum gave me that light at the end of the tunnel.  Although dim right now, but hopefully some one out there has gone through this and is pain, well almost pain free.
And that folks is my story the short verison.... tongue

Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 8/31/2010 8:54 PM (GMT -6)   
Good Evening Mikeyd!

Thank you for the additional information! I have asked one of our young members to take a peek at your post when she gets a chance. She has quite a bit of experience with the implants, and may have some good advice for you to take to your DR.

Give her some time, as she is a busy little critter! smilewinkgrin

I really think you need to get the implants problem fixed first, and then evaluate your next step in pain care. Also is your Dr that you are seeing a PM? ...if not I would strongly suggest that you see one.

Take care!

SE wink

Regular Member

Date Joined Jul 2010
Total Posts : 416
   Posted 8/31/2010 10:13 PM (GMT -6)   
smilewinkgrin  Hey Mikey,
Welcome to the forum. I'm having a tough night so unfort. don't have any advice that will help you. I just wanted to welcome you to this great forum and tell you that you've found a wonderfull place to come to vent, get advice or give advice. Everyone here is very supportive. I know someone will be along to help. I wish you a better pain free day. Take care , Heather
Big Hugs, Mama6

DX. with Fibromyalgia, Narcolepsy, Poss. RA or Psoratic Arthritis, Herniated disc 3x in last 7 months
Meds: Nuvigl, Cymbalta, Tramadol

Mother to 5 wonderfull kids. Oldest is 18 and just left the nest for animation school. Youngest just started 2nd grade. So I am crazy, and feeling my age plus some.

Veteran Member

Date Joined Mar 2008
Total Posts : 3089
   Posted 9/1/2010 8:00 PM (GMT -6)   
Hi Mikey,

I'm sorry to hear about the problems you are having with your pain management and your stimulator. It sounds to me like the leads, not the battery are the problem, so I'm not sure why they replaced the battery. Who is taking care of you in regards to your stimulator? Are you still seeing the neurosurgeon/PM that put it in? I would get together with your rep and your surgeon & say "look, I'm still having problems, how can we fix this." Your Medtronics rep does possess the ability to test the leads in the office to see if they are working properly. Maybe it's bad placement, or maybe it's bad hardware. Either way, if they aren't working, press them about going back in & replacing the leads. Obviously you will get poor coverage if your leads aren't working properly. I'm not 100% sure, but I am pretty sure that there is some kind of warranty on the stim technology, so you should be okay insurance wise. If your surgeon is unwilling or lacks the necessary knowledge, then I'd look for another doc who is more familiar with stimulators.

Also, what features do you have activated on your stim? Has your rep set it up so that you have control not only of the program & the intensity, but the frequency & the pulse-width as well? I have found that those last two features can be very helpful. The frequency changes the way the stimulation feels & the pulse-width allows fine-tuning of the area of stimulation, so you can get the stimulation where you need it. Granted, my stimulator is in my face, so my rep says that I am more sensitive to the effects of these features, but I wonder if you haven't played around with them yourself, if they might help you.

As for the meds that you are on. Yes, one of the goals of a stimulator is to reduce the amount of meds that you are on, but more often than not, I think any resulting reduction is minimal at best. For example, I'm still on the same meds as I was before. The stim, like meds, is just another tool that we can use to help reduce our pain. Although it helps many people, a 50% reduction in pain is considered grounds for implant, so you need to have realistic expectations. Stimulators are not cures for CP (except perhaps for a rare few), they are just one more device we use to manage our pain.

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