Neurostimulation stimulater implant

I need to talk to somenoe that has or has a neurostimulation stimulater implant. I recieved my "7" day trial period las thursday and I need to know is it normal to hurt so bad in the lower back.. My chronic pain is in my right ankle and foot due to a very bad fall.. I use it while trying to walk and my leg gets all wobbly.. I need to know if I am normal or what is going on.. I guess I just need someone to talk to ..

Thanks
shirley
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browneyes_66860 post transferred from crohns board

Post Edited (MMMNAVY) : 7/13/2008 4:46:26 PM (GMT-6)

Shirley,
I don't have an implant, but there have been several recent posts/ threads about stimulator implants. I'm assuming it's the same thing you're talking about.

I just seem to remember people cautioning that if you didn't have a good experience with the trial, not to get one implanted. It seems as I read so much can happen with leads, etc., yet I'm sure some people have good experiences but maybe they're not posting.

Scan or search the threads on the first couple of pages, and I think you'll find more from people who have actually tried it.

I wish I could help more!

PaLady

I have an implant and what you are discribing does not some normal at all. What did your doctor say when you discuss this with him?

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Stella Marie,.

I havent gotten alot of my doctor yet.  I was instructed that it might hurt more then normaly cause he had some kind of problem getting the leads to stay... I guess is I need someone to tell me what to expect.. I really thought with dealing with the pain of my ankle that pain would not bother me.. omg i am so wrong... I go see the doctor again this coming up wendsday.. I do know tho if much more pain im giong to have to call him before our appointment.. thank you so much for answering my post.. This place seems like a bunch of really nice people..

Browneyes, Your leads may be in the wrong place and or the programs may need to be redone. You shouldn't have wobbly legs as I understand it. Some people have reported having wobbly legs though and I can't remember what they said the cause was. I don't have a SCS, but have been doing a lot of reading on them. I do suggest having your trial inplant reprogramed to see if that helps any before you call it a failure. Also depending on how they anchored the leads and placed them, the incision site will probably hurt for a few days or couple weeks. On one of the threads someone posted a useful website that had a bunch of people with SCS implants where you could go and talk to them. The thread was titiled something like stimulator...

Hope that helps you some.

Browneyes, I have just went through the trial myself!!  I have to say, check and make sure that your stimulation isn't too high, I think that gave me a feeling like I had noodle legs!!  LOL!  Try that, don't know!

I am still considering getting the permanent myself, so I can't help there, but this forum has TONS of great info about them!  People here are VERY helpful!!

I did get a LOT of pain at the lead site, and it seemed to wrap around to the side and front with that, but I hear that the permanent doesn't have that problem because everything is under the skin.

Please make sure to have a sucessful trial before you decide ANYTHING!!  I had a successful trial, according to my doc, but I'm still not so sure about it because of all the problems I hear!!  I still have to see another doc to see what he says too!

Best wishes to you, and I hope this helps a little!  Please write if you have any more questions!!  Oh, and I would talk to your doc if you are having that much pain!!  I wasn't given any extra pain meds and that made it VERY hard to tell if the device was helping at first or not!!

Good luck to you, and all!!

Thank you so much everyone for all your help and your advise.. I called my doctor today.  He said it was normal to have the pain I was having.. But am going to have the "trial" removed Wendsday.  The doctor said he would put the permament one in if it is needed.. I was only able to get about 1/3 of my pain relieved.. But again from all the pain in the area the leads are coming out.. Who really knows if it helped or not.. Again thank you all for all your help...

 

shirley

Shirley, I wish you the best!!  I only got about the same amount of relief from it and I am still deciding myself about the permanent!!  I suggest maybe reading a couple of the other posts about the stim too, it may be of help as well!!  Best of luck to you and all!!

Hello,

If you would like to arrange a time to meet in the chat room for chronic pain, I will be glad to tell you anything you want to know about my experiences. I am on Eastern Standard Time an disability so I am wide open, If this works for you, name a day and time and we will confirm.

I have a Medtronic pump and an Advanced Bionics stimulator.

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Stella Marie

Rare neurodegenerative disease called “Multiple System Atrophy”.  Wheelchair, O_2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.

I had a medtronic neurostimulater implanted in October 2006.  I have failed back surgery syndrome, aka there's nothing more the dr's can do surgically.  I have pain in my lower back, down both sides of my legs and feet.  The neurostimulator has reduced my pain by 60 to 70%. I take Ultram and Lyrica to augment the 30 to 40%. For me, it's better than wearing a fentanyl patch.

 

General thoughts:

• No guaranty of 100% pain free.
• It's very important that the lead that go in your spinal column and placed properly. If you have two lead like me, they need to be placed far apart so that you get better coverage. (Mine are too close to each other so it's not as effective as it could.
• Don't be shy to ask for an adjustment.  Make sure that the tech. takes as much time as you need to get the adjustment the way you want.
• You'll need to carry the little transmitter with you at all times, so that you can adjust the stimulation when you lie down, stand up and turn it off. I call mine transmitter my "rear-end remote" since the receiver/battery is in my upper left butt cheek.
• You will no longer be able to have MRI's on any part of your body. This is very difficult for me since I also have MS, and the MRI is the main diagnostic tool.

Good luck making your decision. Let me know if you have any further questions.

 

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ncee

Thanks for your quick reply.
This is my first attempt to use this website. I would love to join a chat but haven't got a clue how to do it.
I also have "failed back surgery syndrome". So nice to have a name for something that has completely altered your life. My surgeon is looking at implanting a medtronics device. According to the website medtronics.com the battery in the device has to be recharged every two - 4 weeks depending on the model! but nowhere does it say how this is done.
I am thinking of some kind of belt that you wear so that the charger comes in contact to the battery through your skin, kind of like a rechargeable tooth brush?
Any ideas?

Dear Melanie,
My daughter has a medtronics stimulator implant and you are right about the belt to recharge the battery-her battery is in her hip-you keep the recharger plugged in to an electrical outlet until you need to recharge your battery-try never let your battery run completely dead and if it does recharge it immediately my daughter was told that if you leave it dead too long it may cause problems with the battery. There is round like thing on the belt that you place over the area where the battery was implanted (make sure you unplug it from the wall outlet first!). There's some kind of monitor like thing to let you know if you got in the right place, it may take 4-6 hours to recharge-but you can still walk around while you are recharging it. You should have a medtronics rep see you before you leave the hospital and he/she will program the stimulator unless your pain doc knows how to do it. It will take awhile for them to get it right (sometimes a few weeks, they may not be able too until you are healed. I hope very much that this helps to relieve your pain. Unfortunately, my daughter's pain is in a place where she needs to move everything-arms, back, neck and head-and she has developed a lot of scar tissue around the area where the stimulator implanted so she doesn't get the relief she used to, but it helped alot before. Pls talk to your doctor alot before you have this surgery-its a very good chance it will work for you, but you need to know what all will take place.
Take care and my prayers are with you. Momcares

I have had a Medtronics neurostimulator for about 10 years, and an intrathecal pump for 8. I have had my share of issues with both, more so with the stimulator and because of those issues I have had several different types of leads and I have had the non-rechargable battery as well as the rechargeable battery model.

As far as the wobbly legs I have two suggestions - one is that you may have it turned up to high - I have had several Medtronics representatives tell me that their biggest challenge when adjusting the settings is getting good coverage in the low back before the stimulation gets too strong in the legs which does make them feel very wobbly. The second is being that the wires are just taped into place, they may have slipped out of place a little. When I had my trial, my husband was injured and even though I was not supposed to, I had no choice but to drive him to the ER. Because of the excessive movement, my leads slipped out of place and I got a very weird sensation in my legs that made them feel very shaky. It was so uncomfortable that I pulled the wires out of my back completely myself.

As far as my pain level from the actual procedure for the trial, I remember telling my family that I felt like I got kicked in the back by someone wearing steel toed boots, but as each day passed, I felt a little better.

For those of you that are trying to decide whether to have one put it or not, it is a decision that should be given a lot of thought, but I have to say that despite the many problems I have had (I am one of those people that if anything can go wrong, it will) the 20 - 30% relief that I get is worth it. Many times it is the difference between my being able to cope with the pain at home, instead of having to go to the ER and be admitted to the hospital for several days until the pain gets back under control.

Because of the severity of my pain, I have to have the stimulator cranked as high as it will go on all settings to get the relief I do get, which causes me to go through what is supposed to be a 5 - 7 year battery in as little as two months! I tried the rechargeable model and I did not like it at all because to me it was awkward, cumbersome, had to be done more often & took much longer than they told me it would to charge, and if you mistakenly let the battery run out completely more than once, it destroys the battery and it has to be surgically replaced.

I hope I have helped in some small way, and if I can answer anymore questions, I would be happy to!

i am sorry if this has already been asked but what is this implant al bout

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I smile through fibro

Awe Navy, I wish you good luck in what you choose! and that
you get relief! I'll say a prayer for you, as I don't know anything about
the SCS, I'll just offer you up comfort and lots and lots of soft hugz..
Keep us posted, okay....

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* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

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The implant is a neuro stimulator that goes into your spine to mask pain symptoms.
If you like go to www.medtronics.com and under therapies go to Nuerostimulators - back pain. it is quite an informative site.
Thank you Blue Jet 2 and momcares , it is good to know that there are others out there going through this.

Hi there:

I posted about this in a separate post but also came across this post when searching the forum for posts on stimulators. I am 29 and had a stimulator perm. implanted on 1/16. For those of you who have questions, I have started a personal weblog which chronicles my entire experience thus far. It's called Chronic Stimulation and the URL is: http://chronicstimulation.blogspot.com/

I hope everyone is having a low pain day.

Best,
Danimal

Hi Danimal,
Thank you soooo much!
This is exactly what I need.
I am 46 and am on the waiting list to have this inserted, hopefully in the next six months. ( I am in Canada, health care is free, but we wait)
I am looking forward to reading your blog thoroughly, I just took a quick look and it is wonderful.
wishing you all the best,
Melanie1234

Thanks Melanie1234! I'm very sorry you have to wait..what are you doing for pain control in the mean time?

And I hope my blog can be of some help to you. I will continue to post about all sorts of issues relevant to stimulators but please feel free to ask or post any questions you may have (not sure if I'll be able to answer but I'll try!).

Take care,
Danimal

http://chronicstimulation.blogspot.com/

Hi Danimal,
I have just finished reading through your blog. It was incredibly useful!
I have forwarded it to my sisters as they also have so many questions.
As for pain control, I use the Tylenol / Ibuprofen combo as well, 1gm Tylenol and 800 mg Ibuprofen 3- 4 times per day.I find it very helpful but takes a few days to kick in when my long acting Zytram XL isn't cutting it. I just got over a particularly bad flare up which left me house bound and on the floor for about six weeks and on Percocet around the clock which only really makes you too stoned to care about the pain. I think what helped to snap me out of it was a change in my Amitriptylline that my Pain doc gave me. He almost tripled the dosage that I was on. I have had a bit harder time with waking up, I could easily nap all day, but that seems to be easing off, as he suggested it would. Boy a spell like that helps to remind you to appreciate the good days.
I loved your comments about the disabled parking permit. You are sooo right! I get those evil looks all the time!
At Christmas time one lady had the nerve to pull up next to my vehicle and start to tell me off as she saw my children and I stepping out of our Truck. She stopped herself mid sentence as she saw my cane, and kept saying "sorry! sorry!" Good to be able to laugh about it.
Thanks again for writing you blog, I think that your scar looks great and is healing beautifully.
I will continue to be following your blog,
Melanie1234

Hello, There is a fabulous blog written by" Danimal". "Danimal" has chronicled here entire experience from its trial period , through implant in January of this year, to present. She includes post op photos.
This has been the best source that I have found. I am still waiting for my surgery. Here is her website http://chronicstimulation.blogspot.com/.
Good Luck, and hang in there. Things will get better!

It sounds like some folks have had some successful results with the stimulators.  My wife had successfully went through the trial and decided to go forward with the implant of the rechargable neurostimulator.  She is young, 32 and has been dealing with back pain for the past three years.  Different doctors have different opinions but at her age the thought was that the stimulator would be the best way to help her reduce the medications she is on which will disolve her liver over time.  She had the first stimulator put in and after 5 months she wasn't getting the same results as the trial.  They went back in to fix it.  The operation took three hours longer than it was supposed to and unfortuantely, the doctor placed the lead on a nerve and she has been suffering with rib pain for the past year.  We now went to another doctor and they want to try to fix it (this will be the 3rd time) I am under the opinion that she should just get it taken out.  I'm afraid with all the scarring etc... that this is going to be difficult to remove the old lead and put in the new.  Basically, they are replacing everything from the battery box to the lead.  She's been advised that the two previous leads are too big as she has a narrow spine.  Does anyone have any thoughts on this I'm trying to talk her out of moving forward and just getting it out all together.  She is torn because the trial was so good and she still thinks it helps her although the pain in her rib is so great it's hard to tell.  This has been a nightmare and I wish we would have never started this and I'm hoping she gets it removed.  I don't wish to discourage anyone as it sounds like this has made a big difference in some peoples lives but for us it is not good.  Has anyone went through this process 3 times in under 15 months?

I see many different directions going on here an I am not sure all the questions are getting answered.

Hi jkensing, I agree in part with father john that it needs to be your wifes decision, but I think that we often forget how much our chronic pain affects our families and how much we rely on their support to get through each and every day. It sounds as if your wife is very lucky to have you in her corner. As a fellow "chronic pain sufferer" I rely on my husband to play the devils advocate at all of the doctor interviews, as I often find it emotionally overwhelming to have to yet again go through the history of "this thing". and end up a blubbering idiot. ( very frustrating). I think the best thing that you can do for your wife is to keep on challenging the doctors with your questions and concerns, you can bet that your wife will be thankful of the answers that you receive and you will feel a bit more empowered. Keep up the good work!