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Old 06-05-2007, 02:30 PM   #1
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Lynne720 HB User
Spinal cord stimulator -Shawley, need advice please

My boyfriend went to see another spine surgeon for a 2nd opinion as he is still in pain after 2 fusions. We really like this doctor and we will be going back to him. He took x-rays and says he sees fusion so no more spine surgeries but he wants my boyfriend to try the spinal cord stimulator. He gave us the names of the doctors who do this procedure and so we have to set up the appointments now.

Shawley, I know you've had the trial done but are getting enough relief to go for the implant? And if there is anyone else here who has this please help.

Thanks,
Lynne

 
Old 06-05-2007, 05:52 PM   #2
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Re: Spinal cord stimulator -Shawley, need advice please

A spinal cord stimulator is the most logical next step... but now you have to decide not only which doctor you want to go to... but also which medical device company you want to use.

Here are some questions you might want to ask your docs...

- How many SCS implants do you do a year?
- How many years have you been implanting for?
- Which device company do you work with (and more importantly, why)?
- Does the doc do the procedure in office, in a surgery center, or in a hospital?
- Does the doc do the implant himself/herself, or does the doc refer the implant back to the spine surgeon?
- (million dollar question) If the doc does the implant himself/herself, does the doc use anchors or does the doc suture the lead directly to the intraspinous ligament? (If the doc sutures the lead directly to the intraspinous ligament, you're talking to an all-star).

Some basics on the 3 companies (in alphabetical order)

ANS

Advantages:
- Constant Current Technology
- Most powerful generator on the market
- Greatest amount of lead options on the market
- Only company able to offer high frequency stimulation

Disadvantages:
- Still don't offer a smaller generator
- Recharging system could use an upgrade

Bottom line: Great system.




Boston Scientific (formerly known as Advanced Bionics)

Advantages:
- Constant Current Technology
- Smallest generator on the market
- Best recharging system on the market

Disadvantages:
- Still don't have a non-rechargeable generator
- Smallest lead spacing on the market (prone to lead migration)
- High recharge burden (i.e. spend a lot of time recharging)

Bottom line: Great system (just make sure lead migration hasn't been an issue with the doc).




Medtronic:

Advantages:
- None

Disadvantages:
- Do not have Constant Current Technology
- Outdated Generator Technology forces generator to be placed right under skin... causing it to protrude and be uncomfortable
- Largest Generator on the market (makes previous disadvantage even worse)
- Questionable customer service
- Just read these boards... the overwhelming majority of posts from people having problems with SCS all have one thing in common... they are using Medtronic.

Bottom Line: If this is the only system the doc uses, grab your boyfriend and run!


Just my humble opinion...

 
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Old 06-06-2007, 02:55 AM   #3
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Minladar HB User
Re: Spinal cord stimulator -Shawley, need advice please

I would suggest you try EVERY THING that doesnt involve surgery first I know I was recomended for a neruostimulator implant last year and was told that it doesnt always work and even if it does its only a temporary fix meaning after some time it does less and less to help with the pain.
so basicly you have to decide if its worth anougther surgical procedure to get some relief, most people get an equivilent amout of relief with intencive physical therapy and pain managment.
I chose not to get the implant done and went with the physical therapy,accupuncture and medications.

 
Old 06-06-2007, 04:12 AM   #4
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shawley HB User
Re: Spinal cord stimulator -Shawley, need advice please

SoCalRaider--You seem very educated with the stimulator and now I'm worried because I'm getting the Medtronic device that is attached to the ligament's in my spine . I have got great result's with the trial Medtronic device but don't want problem's down the road . Where have you got your info from ? Have you tried the stim ? I was told by some people the Medtronic was the way to go . Thank's for your help


Lynne-- Yes I have got great relief from the Trial Stimulator .

 
Old 06-06-2007, 04:15 AM   #5
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shawley HB User
Re: Spinal cord stimulator -Shawley, need advice please

[COLOR="DarkRed"][B]Ask Pepper about her friend that has got great relief from their stim for 14 years and counting ..Maybe some people don't listen to their Dr.'s and mess it up ??? [/B][/COLOR][QUOTE=Minladar;3027972]I would suggest you try EVERY THING that doesnt involve surgery first I know I was recomended for a neruostimulator implant last year and was told that it doesnt always work and even if it does its only a temporary fix meaning after some time it does less and less to help with the pain.
so basicly you have to decide if its worth anougther surgical procedure to get some relief, most people get an equivilent amout of relief with intencive physical therapy and pain managment.
I chose not to get the implant done and went with the physical therapy,accupuncture and medications.[/QUOTE]

 
Old 06-06-2007, 04:37 AM   #6
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ms_west HB User
Re: Spinal cord stimulator -Shawley, need advice please

If you guys want, when I go to church on Sunday I will try to find out the brand that was installed with this guy. Unfortunately I don't have his direct number and will have to find him there.

 
Old 06-06-2007, 04:52 AM   #7
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shawley HB User
Re: Spinal cord stimulator -Shawley, need advice please

Pepper I would luv that please do it . I want to know .

How's the puppy ?

 
Old 06-06-2007, 05:19 AM   #8
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Re: Spinal cord stimulator -Shawley, need advice please

Minladar,
i was told the same thing. I asked my Doctor at HSS about stim; he answered that this is not panacea people think it is. He told me that it does not help your back pain at all - just your leg if you experience neuropathy pain and it is not helping everybody. He said that in many cases becomes useless in time and it needs to be removed. He asked me what is my mane concern painwise: back or leg. In my case is back - than he said i don't think it is for you...
But please, by all means, i don't want anybody to get discoraged from this opinion, our cases are different and very unique. What helps one person, may not help another...

That is what makes me think...

 
Old 06-06-2007, 05:31 AM   #9
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shawley HB User
Re: Spinal cord stimulator -Shawley, need advice please

That's why these boards are so useful , all the knowledge from people who have experienced these thing's . Moldova your right some people it doesn't help some it does . My surgeon said it doesn't do a whole lot for the back but he is going to place a lead near my fusion to help some what with pain . He think's it will be reduced some but may have back pain away's ?
I really don't want any pain , but I have 60% in my leg's and feet and 40% in my back so it should help me.

Thank's for your info , I take em all in believe me .

Shawley

 
Old 06-07-2007, 04:11 AM   #10
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shawley HB User
Re: Spinal cord stimulator -Shawley, need advice please

SoCal--I appreciate all your help , I do . But with the trial stim I was able to change the frequency of stimulation from a high vibration to an impulse which it felt very good . My surgeon said I shouldn't do anything at all for a month so scar tissue will not build up around the lead wires . The Med rep said Medtronic's has come along way with new technoligy in the stim . I really don't know what to think . I was told by other's that the Medtronic was the best out there ??? I'm not so sure but you have to look at my point of view . Not to be rude but how do I know for sure your not just pushing this device to get people to buy these new stim's ? I don't know you at all and all the scammer's out there today you don't know who to believe . Please don't take this the wrong way . It doesn't matter anyway it's to late for me to change if I wanted.

Thank you for helping me with this , I do appreciate everything your trying to do.
Shawley

 
Old 06-10-2007, 12:06 PM   #11
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Bekah61 HB User
Re: Spinal cord stimulator -Shawley, need advice please

[COLOR="Red"][/COLOR][QUOTE=Lynne720;3026943]My boyfriend went to see another spine surgeon for a 2nd opinion as he is still in pain after 2 fusions. We really like this doctor and we will be going back to him. He took x-rays and says he sees fusion so no more spine surgeries but he wants my boyfriend to try the spinal cord stimulator. He gave us the names of the doctors who do this procedure and so we have to set up the appointments now.

Shawley, I know you've had the trial done but are getting enough relief to go for the implant? And if there is anyone else here who has this please help.

Thanks,
Lynne[/QUOTE]

Hi Lynne, I'm new to this sight this is the first time I've posted anything so I hope it works. I have spinal cord stimulator by medtronics, in my case I wasn't given a choice I was supposed be more educated on what units were available but the Dr. neglected to do so. Anyways, I had my stim put in November of 2006 had to have a few adjustment with the different programs but I loved it. No more pain meds that was the best part of having this stimulator. Come March of 2007 I starting having some problems with it, it wasn't give me the constant stimulation it was in the beginning and then it completely quit on me. I had to travel all the way back to Baltimore,Maryland to see the Dr. which has been quite an expense over the year being from northern Maine. I went to this Dr. because he was the best around, they couldn't see anything on x-rays so he decided to go back in and see what the problem was. I had a micro-fracture in the wire(lead) that goes from the back to the front to the implanted component. So I had to get it revised, basically had to go thru the whole surgery again. Got home after a week and the remote to turn it on and off completely quit, so I got in touch with medtronics and the overnighted me another remote. I'm still having problems with the remote communicating with the implant. This has been 6-wks, I got in touch with medtronics and they told me they would get back to me in a week which the call came 6wks later. Come to find out my Dr. I had at John Hopkins was leaving so they found a Dr. about 3 hrs. away from me and I'm supposed to meet with a medtronics representative in a few weeks. I'm going to give it a try I don't know anything about this new Dr. Medtronics set me up with him so hopefully all will go well. I really love this stimulator if I could just get it to work right, it surely has helped with the pain that I have lived with for 26yrs. I haven't had to take any pain meds when the stimulator is working, I really hope I can get the problem fixed cause I certainly don't want to keep on having it revised. The reason I have this stimulator is basically for leg pain, I broke my back 26 yrs. ago and it just got worse thru the years. I had a fussion back in 2004, it helped with my back but not with the nerve damage already done in my legs. I had a freind that had stimulator and he loved it thats how I found out about it. I did some research on it and thought to myself this is the answer I've been waiting for anything is better than depending on Pain medication for the rest of my life. So, I made an appt. with this Dr. at John Hopkins in Baltimore and I was a candidate for it so long and behold I didn't give it anymore thought so I said lets do it! I'm not trying to discourage u on getting this stimulator, don't get me wrong I love it I just would like for it to work for me, my only complaint is "MEDTRONICS" its just been a big run around with them and I'm sick of it. Hopefully I can get the kinks worked out cause I do want to keep it long as it keeps working. If there is anyone else out there that has had a spinal cord stimulator made by medtronics, I would love to hear from u and the problems u have been having with the stimulator or the company, please do share. Thanks for listening, hope to get some responses. Lynne good luck to your boyfreind, but make sure u do your homework on the different companies who makes this product because it is a wonderful thing. Take care, Bekah61

 
Old 06-10-2007, 12:11 PM   #12
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Re: Spinal cord stimulator -Shawley, need advice please

Hello, I am very interested if there has been any problems with a micro-fracture in the wire(lead) with the medtronics stim. If you're aware of any please do share, I am soooooooooooo discouraged, don't want it to happen again. Thank u, Bekah61

Last edited by HBMod07; 06-21-2007 at 07:16 PM.

 
Old 06-10-2007, 05:34 PM   #13
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Re: Spinal cord stimulator -Shawley, need advice please

Hello again SoCalRaider, it was nice to get such a quick reply from u. The next question of the year is do u know how or where I could find out some more information on people that have had problems with a fracture in the wire? This would be very helpful to me right now, obviously I haven't had much help from Medtronics I feel they are very negligent in their support whatever it may be anyways, thats been my experience with them. Do u know if there has been any legal actions against them at all, very interested, just doing my research on them to see how reliable they are or if its just me. The last thing that a Medtronics rep. told me is they don't know what to do for me. Exspecially, because as they quoted" I'm geographically in the wrong part of this country to be in" the closes place they will travel to meet with me is 3 hrs. south of me. I love this stim. and I don't want to live with out it but if I'm going to be running into a brick wall every time I need help, I need to find something, someone more reliable. Any information would be helpful and very much appreciated. I just need some answers, and I won't give up until I do, I've come this far. (I'm a survivor) Another ? Do u have a stimulator? I'll be paying for these 2 past stim surgeries for the rest of my life, I gave up alot to get to this point. Anyways, thanks again for your information, take care. Bekah

Last edited by HBMod07; 06-21-2007 at 07:21 PM.

 
Old 06-10-2007, 06:59 PM   #14
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SoCalRaider HB User
Re: Spinal cord stimulator -Shawley, need advice please

Hi Bekah,

Regarding the legal actions, I really don't know what your options are other than sitting down and speaking to an attorney. The best thing to do is look and see if Medtronic offers a product warrantee on their leads. I would think they would at least offer a 1 year warrantee, which might then force them to pay for the surgery as long as the fracture occured in the 1st year... but I'm not a legal expert or anything. I also don't know how to put you in contact with more people who have experienced lead fractures other than the ones who you will find on here.

You mentioned something about having to pay for this for the rest of your life. Do you have insurance or are you paying for this whole thing out of pocket?

 
Old 06-11-2007, 07:24 AM   #15
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Re: Spinal cord stimulator -Shawley, need advice please

Hello there again, a medtronics rep. told me when I was having a reivision that the wire was not covered but the implant was and battery, go figure. I have 80% coverage far as the surgery goes but, the Drs. visits I have to pay out of pocket which is quite a lot plus 20% of the leftover cost of my 2 surgeries which they charged me the same thing as they did the first. So, I have quite a bill against me. My secondary insurance won't cover the rest, I did submit it to them but its not covering it. I've tryed to make arrangements for payment but they have ignored my request and send my bills to a collection agency. So now I'm getting phone calls and letters from the collection agency. I haven't given up yet, just discouraged it never ends. I have talk to a lawyer and he hasn't seen any cases regarding my situation he did a little research, It could be that Medtronics is hiding this or nobody has complained about this type of problem. I do know there has been some cases with the pacemakers for the heart. I just wish I could talk to some people that have had the similar problem that I have experienced and what was done about it. Trust me I have been on this darn computer doing alot of research and have come up with nothing until I came to this site. I really appreciate u corresponding with me hope I'm not too much of pain in the butt. If u can think of anything that might help I surely would appreciate anything. This whole ordeal was supposed to be a promising one but so far its just been a nightmare, its hard when I've been going thru this whole thing by myself. Sometimes I wonder where I get my drive from, I haven't given up and won't until something gets settled, very determined. I would really like to resolve this but I just keeping on hitting the wall, I don't won't to go back on meds thats for sure. I'm glad I have my faith, I want my life back I'm just 45 and have alot of living left to do. This whole ordeal has certainly alterted my life in many ways, it ended a 21 yr. relationship and now I'm living alone I try to look at it like he did me a favor one less stressfull situation behind me right! Well, I won't ramble on anymore thanks for hearing me out and believe it or not you have been very encourageable thank u so much. Oh yeh, u asked if I had a rechargeable unit, yes I do. Take care, talk to u soon. Bekah61

Last edited by HBMod07; 06-21-2007 at 07:21 PM.

 
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