Neuro-stimulator

[tanglewood]

Has anyone had any experience with a neuro-stimulator implanted in the back? I am supposed to have a test in January where probes will be put near my spine; the wires will come out of my back for the test and if the stimulator doesn't help, then that's the end of that possiblity. If the test is successful in controlling my pain they will remove everything and wait three to four weeks until I'm completely healed; then they will implant the stimulator and wires and probes permanently. According to my pain doc the success rate is greater than 80%. I would sure love to hear from people who have had experience with the device. thanks

[HawktheSlayer]

       Hi, sorry to hear that you have pain.

             I have an SCS implanted for L4-L5 / L5-S1 nerve pain in my left leg. You will know how much help you will get from the SCS when they do the trial unit. I my self had 80%+ from the trial unit. With the main unit installed I started at about 60-70% which for me was great. Right now I am getting about 40-50% now keep in mind that when they install the main SCS unit that it will be a little diffenent postion then from when they had the temp leads in. Also I have a 16 point lead installed so me and the Medtronics tech. can turn on and off different areas to try and cover my pain better. This process takes a little time with him changing the lead points and settings and you need to use and try the different settings for about 2-3 months to get the real feel for how its helping. I have an appointment on the 24th for an adjustment and will let you know what change I get as to how much it is helping. Also keep in mind that when the lead scars in it might shift a little bit. I think that is what happened to me with my pain reduction level changing. I do have to say that with the pain I was in and the pain that I have now is a huge change. It really gave me my life back I still have to take some pills for pain and nerve issues but compaired to the pain I was in it is a lot less. I hope that you can get some reduction in pain to make your life a little easier to continue on enjoying life. I was pretty much out of it before my SCS was installed. I atc only keep going because of my wife and kids without them I would not have gotten to the point of having the SCS unit trial done. It really did save my life. Sorry about that sob story but that is where i was before the unit. So I hope that it can help you as much as it has helped me.

R/
Adam

[Tuckamore]

Hello Tanglewood,

Welcome to the pain management forum of Med Help. I am sorry that you have chronic back pain. Many members her suffer from your condition. I see your question posted here several times a month. There are many thoughts on this procedure.

According to literature Neurostimulation delivers low voltage electrical stimulation to the spinal cord or targeted peripheral nerve to block the sensation of pain. One theory, proposes that neurostimulation activates the body's pain inhibitory system. According to this theory, there is a gate in the spinal cord that controls the flow of noxious pain signals to the brain. The theory suggests that the body can inhibit these pain signals or "close the gate" by activating certain non-noxious nerve fibers in the dorsal horn of the spinal cord. The neurostimulation system, implanted in the epidural space, stimulates these pain-inhibiting nerve fibers, masking the sensation of pain with a tingling sensation.

I have heard different statistics than what your PMP is providing you. In my opinion that success rate is not quite as high. But the important thing is that you do exactly what you are doing, educate yourself so you can make an informed decision on this procedure. There are side effects that you need to understand such as infection rates and long term issues. Be sure the procedure is done by an experienced practitioner. Ask how many times and how long he has implanted the device as well as his particular success rate. It is important that the probes are properly positioned. I believe the power source needs to be changed every year or two.

Other's will post with additional information and their opinions. When it comes down to it if you are in severe CP what so you have to loss? I have tried every thing recommended by the physicians that I trust. If I had a condition that could be helped by the procedure I am not sure I would have a neurostimulator implanted. My PCP is not particularly recommend the procedure. She states her patients have had more issues with it that good pain management results. But that is only her opinion. She is not a PMP. But only you can make that decision. You should have a fair idea of how it will work after the trial implantation. I would at least give that a try.

Good luck to you what ever your decision may be on this procedure. Please keep us updated and let us know how you are doing. If you have any other questions or concerns or just want to chat we are here for you. Take Care, Peace, Tuck

[worried878]

agree...when someone hurts bad enuf..they r willing to try just about anything...research and like mentioned...what have u got to lose?  

[tanglewood]

Thanks for all the information! I was starting to think noone had tried it. Adam, what you said about scarring and placement are my biggest concerns. My hope is that the stimulator will knock the pain down enough that I don't have to take so much medicine. I was taking Methadone and stopped after researching; now I'm taking hydrocodone and lyrica and it helps, but I still have a lot of pain and don't enjoy much of anything. When I was taking the Meth I felt normal and was enjoying life for the first time in several years, but Meth scares me. If the stimulator doesn't work I'll probably give up and resign myself to taking Meth the rest of my life. I hope to have the stimulator test done in January.

Thanks, Tuck; Adam; and Worried,
Jerry

[Sunflower1975]

No, meth is not way to go. Meth will KILL you. Please google and type Meth Faces. This what it will happen to you. Its not worth it. Please don't use Meth. There is more medications to try until it works, perhaps cocktail of drugs like pain meds with relaxer, and stuff like that and make your pain manageable, maybe little pain. You can't expect pain to be gone 100%. Its better to have less pain than severe pain, you know?

[Tuckamore]

Methadone when used as prescribed is actually a safer opiate than many others. There are several research studies out that prove that statement. I know patients that have taken Meth for years for CP, as prescribed without any major side effects. They look no different than the average person on the street.

But everyone has their own opinion and they are entitled to them. They are horror stories with all the major opiates as well as withdrawal horror stories with all of them. What I beleive is important is your quality of life and Meth offers that for many CP patients.

Peace,
Tuck

[worried878]

methadone is a safer drug than bu11loads of other opiates if someone is gonna be on it long term...just another opiate/without the euphoria so less abused,,,if it were tons of fun to taking meth..there would be linesevery morn at the clinics...not to say it is not some's doc  but not as a rule ...persoanlly i would rather take 10 mgs of meth in the am and another in the pm than take 12-15 hydros a day and fry my liver...everyone is different and choices are different as well...but looking down a methadone user is like looking down on a fentanyl patch user, oxy slow release..a sub user..all have long half lives and wds sux

i think this implant sounds like a good plan...i would take 50% pain relief.,,we are going to try botox i think in my neck and should...deadens nerves and helps pain and spasm..tho temporarily..i will take it!

[Sunflower1975]

I thought s/he was talking about Meth, not Methadone. If its methadone, then I apologize for misunderstanding.

[HawktheSlayer]

Hi Jerry,

   Just wanted to check in with you and see how things are going? Hey did you first try the TENS unit? you didnt mention it in you first post. I know that it was my first step to the SCS unit implant. Its helped me and that lead to the SCS trial unit, then the implant. I sure do hope that everything is going well for you and the process of finding you pain reduction. Please let us know how things go with the trial.

R/
Adam

[tanglewood]

Thanks, Adam - no, I have not tried the tens unit on my neck; they gave me a number to call to order it and I did not follow up. I used a tens unit on my lower back and did not feel like I got enough relief to justify all the trouble of trying to use the unit. I kept it for about two months then sent it back. My insurance paid part, but it was costing me to keep it and I didn't feel like it was helping much. But, that was my lower back and about two years ago. I should probably get it and try it on my neck.
Thanks for the follow-up. I will let you know how things go. Right now I'm using Hydro and Lyrica to control the pain; it's a roller coaster.

Take care,
Jerry

[tanglewood]

Hey Adam,

    You were so kind to follow up with me; how are YOU doing? Is your pain under control? I hope you are doing well.

Jerry

[HawktheSlayer]

Hi Jerry,  

  No my pain is atc going up right now not down. I think that the scar tissue from my first 3 surgeries is starting to wrap around my other nerves, but I cant have a MRI again to see what is going on. I have an appointment on the 7th with the medtronics tech to make some adjustments on my unit to see if we can find a better location to help with the pain. I am waiting on a call from my PMP to see why he lowered my pain meds insted of raising them. I also take lyrica and it does help some but just not enough, I will prob find a new PMP soon if this one keeps messing with me. I just hope that with the adjustments on the SCS unit that I might get some more releife from the pain. I still hope that your trial goes good and they can help you with your pain. I'll keep intouch as much as I can.

R/
Adam

[Rcoker245]

I have had the neurostimulator implanted today. I had the trial and it was a success. I'm having some surgical pains tonight like sharp pains from one incision to the other ones. I had have 3 laminecties and one big back fusion from l1 to s1. I had bones spurs when he put in the stimulator. Maybe that's what is causing my sharp pains now

[momtofourboys]

Hi Adam
I just saw your post  I have a spinal nerve stimulator in my spine.. I had a temp one put in and it was pulled out with in 3 hours of having it implanted (DO NOT put your hands over your head) I can give you more information on the no no's later.

I had the final one put in on July 3 and I would say my pain is aobut 60% percent better. The healing rots but I think it is worth it. I tried so many drugs to help my pain. I have tumors in my foot that are wrapped around the nerve  and they take them out but they grow back.
The people from Boston Scientific are great. they are the ones who control the device. you are awake during the procedure (well tehy give you stuff to "make you groggy" while they are implanting the wires and doing the spinal. they you come to and the people from Boston Scienctific are htere and ask you where you feel the stimulation. and you go from there. the first proceedure can take anywhere from 45 minutes to 3 hours, depends on how fast they hit the nail on the head. I will tell you I wasn't very hopefully but I had to try and I am glad I did.
Now for the no no's you can't bend you can't raise your arms over your head so wear a button down shirt. you can lift (I didn't have to do any house cleaning ya hoo) you can't take a shower while you have the wires exposed or a bath. not even to bend to wash your heal for like 10 days, I made a few hair appts to get it washed. when the final one is in it takes 10 weeks for this to heal then some.
Oh you can't drive with it on.
Now charging is fun you have a thing to charge like a cell phone and then you have to place the charger on your buttocks to charge the implant mine takes 3 hours aweek to charge and you can't charge it over night, you don't have to charge it all at once.  fore warning I was wearing s very light pair of pants while charging and you could see a green light on my butt. (Not Funny no wonder so many peole are staring at my butt)
I recommend that either you get some pillows or something so when you haveit done you are sleeping upwards, like in the hospital so you don't have a hard time getting out of bed.
Oh they set it, my puling up so it feels like a chopy thing and they can adjust it so it a a smoother feeling.
Also it seems weird, you think everyone can hear it vibrate and see it vibrate however they can't. I don't even realize half the time I have it on since it is a smooth feeling not a chopy feeling.
I do have to admit, I feel in July and yanked it out of my spine and they have to go in and put it in place with paddles, lets hope  that doesn't happen to you. the recoup is longer, but still worth it.
If you have any more questions don't hesitate to ask I love my stimulator.
good luck
Michelle

[momtofourboys]

i also should add that you can not have MRI's or CAT scans done once this is in. also you have to be careful with going through metal detectors like at airports or going onto courts.   the day you have it implanted they will give you a temp card for your wallet and then a final one will come in the mail
good luck and I really do hope this works for you
michelle

[HawktheSlayer]

Hi Michelle,
  I know about the MRI and CAT scans and the airport problems you can have Im a goverment contractor so I fly alot, but I do have to say that I only had the detector go off one time in a rather small airport, but I had my implant card and every thing was ok. As far as driving ( I still drive ) and my unit is on almost all the time. My bigest thing to tell people that are looking at getting the unit implanted is this : During a normal day of work you might have to raise the levels to get more or better coverage of the pain areas while working. Now when you go home and rest these levels can be not so good. and Example that I have done myself was that I had worked a 9hr day and my unit was at about max, I cam home and went to lay down on my bed to relax a little bit before getting up to do things around the house. Well when I layed down the feeling or shock from the unin went up about 50X I was totally unable to do anything, I was lucky that my wife came in to see how I was doing and noticed me laying on the bed red faced and crying , I could not even scream for help every nerve was getting shocked. She knew how to turn the unit off and did. Then I knew that I would have to have another setting to change to when i got home or to turn off the unit if i was going from a standing to sitting or laying down.

Michelle and Jerry,

   Michelle I am happy to hear you are getting 60% reduction I was at about 70-80 at first but now im at about 40 but it still is nice and knowing that I have 16 nodes that we can turn on and off gives me hope to find a better spot.

Jerry,

I know that when you have the  trial  unit done it will be a little bit of a pain becuse its external and the wire moves more than with the unstalled unit lead. With the trial I would feel change in amp and location by just turning my head a little to the left or right. but I was still able to see that it was going to help me alot. So I do hope that it works for you and if it does not that you are able to find somethingelse to will

R/
Adam

[momtofourboys]

I am sorry I got you guys mixed up my comments were for the person asking about them. I was told not to drive with them on.
also a warning DO NOT LET LITTLE HANDS gets your remote, they can blackmail you.
yeah I noticed just from sitting down to standing the difference in strength, but I adjust it.  
I go into a court often, doing an internship, and I always set the alarm off it is a hand held one

So Sorry  to mix you guys up I don't know how that happen I guess thatis lack of sleep
good luck  Jerry

[starr_tacey35]

I did the trial and it was the worst experience I have had in a long time.  I felt them put the leads up my spine I actually screamed in the OR.  It was horrible.  Then the leads kept moving the whole 4 days and shifting.  I could not move my head even an 1/8 of an inch before it would shock me.  I wish you luck because I had no pain relief and my back and neck are now completly hypotonic and have had a migrain for the last 4 days since they took it out.  

Good luck,  Starr

[GREATFUL4]

I HAVE THE NEUROSTIMALATOR INPLANT, I LOVE IT & IT HAS HELPED ME ALOT, BUT NOW I AM EXPERIENCEING ALOT OF PAIN ON MY THIGHS AND LEGS. WONDERING IF ANYONE HAS ANY THOUGHTS ON THIS PROBLEMS. THANKS



GREATFUL

[dtaylor1965]

I was told it was safe to have a CT and had have several up until July 2009 when I had one done on my abdomen and after several scans the girl told me we had two left and then I was done.  However, she went to do the 1st of the last two and I got an electrical shock that caused me to leap 3  feet off the table, the girl came out said sorry and it shouldn't happen again, to my yet last surprise It was worse then the first.  I was then paralyzed in my right leg and left should.  I was in the hospital 3 days for observations.  After 8 months the Neuro Surgeon replaced the battery pack that was damaged.  This didn't fix the problem, as I am still having stimulation to my heart and lungs.

[mapleshadefarm]

i've had the TENS unit for almost 3 months, and I have had amazing results with it. Getting about a 70% reduction in over all pain as well as only having to take 2 ..15mgs of morphine a day along with my fentynal patch every 48 hrs.  I have severe neurological pain every where from a rare reaction to a medication, along with back  and over all joint pain.
IWith just taking the 75mg fentnayl  every 48hrs and 6..15mg of morphine tablets per day for over 2 years  now. I am lucky if I got about a 30-40% reduction of pain.

BUT I have to STOP at least the morphine as I have crohns as well as diabetic gastroparesis.

I was told about the Neuro-stimulator and had high hopes of being approved by medicare and medicaid as that is all i have for insurance, as I have been disabled for 3 years now.

I am only 54 and I have a long life to lead, along with raising a 15 yr old daughter myself. Does anyone know if Medicare approves of the Neuro-stimulator? please.

Even though the TENS unit works awesome, I can not afford the 4-6 9volt batteries a day as the only way I get true relief is to have it on the IFC setting and then 1 9volt battery lasts about 1 hours.The least expensive I can find a 9volt is for $2.50 each so that is at least $12.50 a day just for the batteries x 30 days a month is $375 a month just for the batteries. BUT I am also only sent 2 packages of electrodes a month from Medeicare and those only last me at most 6 days total.

So even though the TENS unit has worked tremendously, not being able to get or afford the supplys is really hurting me. So that's why It was mentioned about the Nuero Stimulator...

So if anyone can help me I would appreciate it,,

Sally

[Bibleman]

I've had the tempory and soon to have the permanent. With the temp I had to go back and have a program change to cover the thighs and shin areas. It was a simple proceedure and I had great relief. I hope something helps - sorry you're hurting.

[atonjr]

I've had a nero implant in my lower back and the doctor cut my Sciatic Nerve .My legs and feet are numb.I can't sit more then 3 minutes.I would never have it done again.Thanks to ST JUDES MEDICAL I'm cripplesd for life.
ED ATON

[imabird]

Your posting was a year ago, but in case other newbies had this question, I wanted to mention that I use rechargeable 9 volt batteries in my Interferential Unit. It's a 'LG Quad Combo' that does Tens, IF, MIC, and EMS. While I'm sitting (I work from home), I am plugged into the wall as when using the IF mode, it'll drain a 9volt (300mah) within an hour (hours using it in the Tens mode). I have many 9 volts charged up, ready to replace the drained one. (There are 500mah+ rechargeables out there, but above $15 a piece, those last longer than the typical 200mah 9 volts).

I'm currently waiting (today) to hear back from the Dr. for the Trial approval with my insurance company. They've been giving us a hard time to get me approved as I believe both the Trial and the real operation will cost up to $70,000, less insurance coverage, in my case, 80% covered).

I'm having to live with the interferential unit, and put it in the Tens mode when I go to bed (on battery). Am hoping to hear good news shortly. Good luck to everyone who has the unfortunate need for the Implant or Tens/IF .

Barry

[RunningMom]

I refused to have the trial.  I'm very leery of someone getting so close to my spine, especially in my neck.  I was told there was only a 50-70% chance of success rate for pain reduction.  I'm honestly happy I decided against it.  That was my personal decision.  Good luck.

I had 3 different surgeon opinions before making a decision.  It wasn't something I was taking lightly.