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Medtronics neurostimulator

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Posted 1/27/2013 4:00 PM (GMT 0)
Hi everyone, I posted yesterday on "they shoot horses...", but I've been advised to start a new thread with my problem.  And I thank you all for helping me out with any advice or knowledge you have.  I never knew there was a site like this and I'm thrilled.

I had two surgeries between 2009 and 2011, the first for L4/5 fusion and the second to remove most of the metal.  I have never had any relief.  The medication road was horrible and I'm right back at the beginning in 2008 when I originally consulted a neurosurgeon. She treated me with Lyrica, Neurontin,  and other meds that did nothing to help me, then after a year, she gave up.  I went to a PM dr. who did all the epidurals, meds, radio frequency, facet injections, and I'm still a mess.  Nothing lasted more than maybe a month.  Now he has given up on me and told me I should really consider the implant neurostimulator. I have "googled" it and review show nothing but regret from people who had it.  I'm petrified yet I don't know what to do. I'm a recent widow, 65 yrs. old, was very active and I feel I'm wasting the last part of my life just "getting through the days."  I even feel terrible posting my problems when so many of you have MUCH more!  However, if someone can enlighten me on anything about the implant, I'd be interested to hear it.  Thank you all for such a generous caring place to visit.  I wish I had something positive to say to you. 

 

Posted 1/27/2013 4:31 PM (GMT 0)
Hi higmo4! I just wanted to welcome you to HW/Chronic Pain! Sorry you are in so much pain - but glad you found this place. I don't know much about the neurostimulator, but there are several members on here who do - I'm sure they'll be around soon. I know a couple of members have had very good results with it. Hope you keep posting so we can get to know you better! There really are some wonderful people here. Have a peaceful day.

Post Edited (Splashdancer) : 1/27/2013 9:34:31 AM (GMT-7)

Posted 1/27/2013 4:31 PM (GMT 0)
Wow, thank you for the HOPE!
Posted 1/27/2013 4:43 PM (GMT 0)
As long as we can wake up in the morning and take a breath, there's hope. Lol And please don't feel bad about posting about your problems - that's what HW is here for! Our conditions may vary - but pain is pain. The emotions are the same for everyone - frustration, anger, hopelessness, fear, sadness - we experience them all at some point in our journeys.

So vent away!

Post Edited (Splashdancer) : 1/27/2013 9:49:28 AM (GMT-7)

Posted 1/27/2013 5:12 PM (GMT 0)
My pm doctor just last year recommended the medtronics stim and like you I'm scared as I've heard more bad then good, and that if it needs to be taken out that can cause problems too...I'm still thinking about it and trying to decide, It's not going to take the pain away, but it gets the focus off the pain, from what I understand of it. before I get mine done however I want new mri's of my spine, just to make certain things are not getting bad, my last mri's are from 2009, maybe you should consider up dated mri's if you can get them done. Retiredmom just had a stim implanted maybe you could go and read thru some of her postings.
The other thing for me is the post op pain from these (and I'm also on methotrexate for RA).
Maybe you should write all your questions down and take them with you to your next pm doc appointment, also maybe start a pro and con list of what this may or may not help you and take that with you to your doctors appointment.
Also before you do get this you do need a psych evaulation, and for that part I know right now my pm psychologists will not pass me thru for yet, so you do have to consider that as well...
Many well wishes on what you decide and keep us posted...
Posted 1/27/2013 5:29 PM (GMT 0)
If you search for SCS or spinal cord stimulator you will find tons of posts. I am having some trouble with mine right now but have had pretty good results till this little hiccup. Mine is made by a different company but the same idea.

After several failed surgeries and several irreversible dxs this was pretty much the last ditch thing for me. First there is a trial implant, pretty much wires are places in the spinal canal area and come out from your lower back. This stays in for about a week so you can get an idea of what it will be like to have the implant. If this gives about a 50% or more pain relief and you pass the psych eval you are set. The implant is typically an outpatient procedure, but can be over night. There is either subcutaneous leads which sit farther out or a paddle lead which requires a laminectomy and is anchored inside the spinal canal on the bone. The battery is typically placed over the buttock area, but can be placed in the abdomen occasionally.

For the first couple months you need to really watch what you do. You dont want to dislodge your leads and cause them to migrate. Once they are scarred in place you are ok. The feeling is a basic pins and needles that can be adjusted as needed. If you have ever used a tens unit it is very similiar to that but widespread. There are some things that are inconvienent about the stim but the benefits outweigh those annoyances for me. What I am the most dissapointed in the SCS is that I cant keep it on when I run or jog. When the spinal cord jars during impact I get to much stimulation, it is uncomfortable.

There are several active members on HW with SCS right now. If this is something that you continue looking into you can definetely look to us for help.

Hugs,
Shell
Posted 1/27/2013 6:57 PM (GMT 0)
Thanks everybody. I don't feel like I have to cry alone now. I am going to look around the site as you suggested and get more ideas. The scs doesn't sound like a "cure" but yes, I, too, would like to get on with my life in at least less pain. I'll be here everyday either complainging (lol) and hopefully able to help someone else some time.
Posted 1/27/2013 7:24 PM (GMT 0)
Hi Higmo4 and welcome to the chronic pain forum. I am glad that you found us. One thing about it, by coming here you will find that you are not alone with your journey of living with chronic pain. I see some of the members have given you some excellent ideas and that is how we learn is from each other experiences.

Please never down grade or compare your pain to anyone else's here at the forum. It is your pain and you know better than anyone how it is affecting your life, that is the most important thing. We all suffer with this beast in various ways and degrees.

I totally understand your fear about the SCS unit, You know that is a very individual type of thing. Like you I have see more negative than positive, everything from not getting any relief to them not working after being implanted. We have one lady that her unit has never worked since the day it was put in & she could not afford to have it removed. Another lady loved her unit for about 4 years then suddenly things went south and she hated it and was sorry she ever had it put in. I do not think there is enough data out there to show a true set of numbers of whether they are effective or not, its just too soon with these units. Do check out our search feature here at the forum & type in SCS units & you will find lots of info.

Anyway, welcome aboard.....Take care....Susie
Posted 1/27/2013 7:28 PM (GMT 0)
Ok, I'm going to SCS units now...thanks so much! I am so happy today (for a change).
Posted 1/27/2013 8:30 PM (GMT 0)
higmo4....i hear more good things about the pump than the scs. my scs never gave me relief....the good thing is you can get a trial first on each of these systems. .....pal pete
Posted 1/27/2013 9:02 PM (GMT 0)
Welcome higmo4, glad your here, and now know you are not alone. I can't help you on this matter nether, but I am happy to hear your happy today. Keep your chin up.
Posted 1/27/2013 9:33 PM (GMT 0)
I certainly had no idea that so many wonderful people are out there willing to give of themselves. I have a large family (5 sisters and 2 brothers) and although they love me and try to comfort me, they have no idea what my day consists of.  I am still going to weigh all my options and hope I can find something other than this implant thing. The pain mgmt. dr. made me feel I was out of options.  I would rather listen to my "peers."  Your responses are overwhelming me today.  Thank you all sooooo much.
Posted 1/27/2013 10:10 PM (GMT 0)
Higmo4, also remember that a good number of people with favorable results, weather it be SCS, surgery or whatnot are out living their lives to the fullest. Not that some people dont stick around and tell of their successes of course. Stick around and you will see the good days and the bad days.
Posted 1/27/2013 11:40 PM (GMT 0)
Hello and welcome, please do your research on the Metronics Neurostimulator. I had mine installed in 2010, it was simple surgery, the time for recovery was less than 2 weeks.

When it was juiced up and ready to go, nothing, turns out it had been installed to deep. So about 1 month or so later, another surgery. Bottom line its has never worked and I am having it removed very soon. The reps from Metronics were never there when I made appointments to see what was going on this time, turns out by then I had to much scar tissue.

My doctor no longer has pamhlets in his office about Metronics products. I can see why. But remember this is only one experience, I am sure others had better. Just think it over and keep doing your research.

Good luck,
Kathy
Posted 1/28/2013 12:19 AM (GMT 0)
Thanks Kathy. As i said before, I haven't heard a good thing about it. Scary. What else is out there? Jeez.. BTW, Good luck to you.
Posted 1/28/2013 1:28 AM (GMT 0)
The spinal cord stilulator has been recommended for me also but so far I am chicken. The one thing my Dr did stress is that you can try it out first. He also advised that the real one will be no better than the trial, so if the trial does not help greatly don't make the mistake of thinking the real one will be better.
I have a friend that swears by hers.
Posted 1/28/2013 1:58 AM (GMT 0)
since we are talking about the stimulator just wanted to clarify a few things. the so called psych test is to try and weed out someone thats seriously disturbed. they are on the lookout for individuals that might be so impulsive or self destructive that the would take a knife and try to cut it out of their body. some people have done that.
most folks will pass the test.
i did have a bad incident just after it was implanted. i needed a hemi laminectomy to get it past my thick spinal bones and when i awoke in the recovery room a representative from the manufacturer started showing me how to operate it. you can imagine how clear my mind was. so there i am the next day trying to adjust it to the right amplitude. i turned it up high and my legs really started jumping with shocks going through them. well do you think i remembered how to shut it off quickly.......noooo. i rang the nurse and nobody in the hospital knew how either. after twenty minutes of being shocked i finally got it off. so there was poor prep work on the part of the people to train the staff and the rep used poor judgement in the timing of my instruction.
the next morning when the docs made their rounds i took it out on them. i called them stupid and it felt good. i told them they needed better preparation. i found out why somebody tried to cut the unit out themselves and maybe they werent so crazy.
for the most part though i'm sure situations like this dont happen...pal pete
Posted 1/28/2013 2:17 AM (GMT 0)
I had the trial for a like stimulator for bladder about 3 years ago and it was so painful (with no meds) in inserting those wires through my back The Medtronic rep was an idiot and I'm afraid the same experience will occur. The unit didn't help me and since then I have had this problem with my back. I swear that trial -which sent shock even running through my vagina-excuse me for the graphics- did this to me. I may not pass the psych test because I may freak out on all these people who seem to know it all but never have lived through it! OH MY...thanks all. I'm going to watch some TV before I dread trying to go to sleep at night. Have a good evening.
Posted 1/28/2013 2:24 AM (GMT 0)
Higmo4,

Welcome to HW..... as you can see - we've got some very supportive, encouraging members here w/ a wealth of information. Hope to get to know you better.

I've had the pump trial - which involved a psych screen.... as Pete said - mostly they want you to understand that something is going in your body, etc. I think you'll do fine.

Anyway..... hope you have a good evening watching your TV shows. I do that late at night when I can't sleep. I DVR everything and watch w/ no commercials, lol.... Have a good night....

Take care --Tina
Posted 1/28/2013 2:25 AM (GMT 0)
I have found so much courage on this site today that I don't even know what to say. You are all so courageous and supportive in spite of all your own issues. I will pray for all of you.
Posted 1/28/2013 2:44 AM (GMT 0)
hi again...
just to try and put things in perspective when you have pain and things like surgery, drugs, physical therapy, esi, rhyzotomy, acupuncture ,yoga etc etc have not helped there arent many options left. if the pain is so bad and you are willing to take some minor risks we are fortunate to at least have a few other options. many folks have got their lives back with the scs or pump. i've gone through it all and my life is still limited but i do plan on trying the pump.its a personal decision and you have to be a little desperate but its try of lay back. i'm on the floor now and i'm being counted out but i know i'll get up and do battle again.....pal pete
Posted 1/29/2013 2:34 AM (GMT 0)
Hi, I just popped on for a few minutes and saw your thread. There are two basic types of SCS units. The Medtronic is one and the Boston Scientific or the St Jude's is another. I had the St Jude's installed on Dec 18th.

Although there were complications immediately following the procedure, I cannot express what a lifechangining experience this has been.

I sooooo understand your pain and I simply cannot express what relief I have found.....especially since we found the perfect setting....that is trial and error.

I know some people have bad reps, but my reps are amazing. They are always very responsive and quick to help.

All my best ( please excuse typos.....I'm nodding off) lol
Posted 1/29/2013 3:23 AM (GMT 0)
Hi Retired mom, I'm going to look into that.  I'm so desperate these last few days that I don't know what to do.  I feel so stuck....ugh....thanks for the input. 
Posted 1/29/2013 3:42 AM (GMT 0)
regarding reps....if in fact you dont like your rep the company will change your rep to another person. you never get ''locked in''
Posted 1/29/2013 3:52 AM (GMT 0)
Remember this is your decision, don't feel pressured into either. If you need more time then say that to your doctor, say :I'm looking into this and I'm still thinking about it and want more time before making this commitment". Your doctor should be able to understand that. Also look at if your pm is going to do the implant or a neruosurgeon/neurologists...many many things to consider...That's how I'm viewing it and all. Number one question to ask your doctor "How many of these have you done?" that might ease your mind as well.
do keep us posted on this okay...many well wishes!
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