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Old 05-13-2009, 03:56 PM   #1
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Spinal Cord Stim .....it's been awhile, but I'm back

I am not a newbie so to speak from these boards, but haven't been around in awhile. Need some input from others. Most of you won't know who I am but a few of years back when I was first diagnosed with RSD I was the ginuea pig who tried the temp spinal cord. Everyone surprisingly listened to my tall tale of a short journel experience. From then I went on to the larger tall tale of a medium journel experience when I went full blown for the permenant spinal cord stimulator. Well, here I am again needing assistance. Who out there has had the spinal cord stimulator for awhile then had it removed? I need some advice regarding this issue.

1) Were you unhappy with the decision you made to have it put in?
2) Since having it placed in have you experienced pain, discomfort other then the usual relief you were supposed to get after implantation?
3) Was the unit placed in the proper spot in your body as indicated by the doctor?
4) Have you had to have an additional operation to either fix a problem, change the battery, move the unit or just remove the unit entirely?
5) Did you notice that the unit worked great for the most part, but then it just fizzled out? It didn't perform as it should have thus causing more pain then comfort?

If you had opted to have the unit removed entirely please explain to me the process. At this moment my unit hasn't been working properly. The Medtronic rep tweaked the unit after 2 years of not working stating there are so many variations to the actual unit that you need to be seen yearly to have it adjusted. This was a HUH? moment cause when I got the unit I was told by the dr who did the surgery...goodbye have a nice life. I asked if I needed to be seen yearly, but was told no. So here I am fighting between dr's and w/c as to whether I should remove it. It is no good is all I can say. I usual keep it off then on and find it might be just right for me all together to get this thing out of my butt/back. Please understand the original dr placed the unit in my butt, thus not allowing me to sit normal or lay on my back. The unit protrudes from my body, gets extremely hot (cooked egg almost) and shifts around.

Has anyone experienced any problems after removal of leads/unit? What impact did it make afterwards on your body? Did you have any type of surgical problems associated with this removal...such as infections, partial paralysis, extreme pain or any other medical conditions not associated with the RSD all together?

I'm sorry to make this so long and if anyone remembers me then I say my hellos, but I do look forward to hearing from anyone regarding this issue as it is an extremely hard decision to make. I want to make sure I have all my options available to me. At this point the original dr who performed the surgery has gone MIA from the practice; so I have to start fresh with a new guy. He is very likable, but he is like "whatever you want". So can you please help me.

Thanks

 
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Old 05-13-2009, 07:03 PM   #2
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Re: Spinal Cord Stim .....it's been awhile, but I'm back

Hey again! Missed seeing you around. I would and will never get the scs but I can tell you what I know.

All the questions you asked have happened to everyone, well 99% of the people I know who've gotten the scs. Numerous operations, leads popping out, not working at all, rapid and/or full body spread. It seems to be the standard and I don't know why docs are still pushing such an invasive thing when the top rsd docs say no way.

As for removal. All those I know who've gotten it removed felt much better afterward, no complications. I think one or two had infection, bad, but if your immune system is doing well then it shouldn't be a consideration. As always you should keep an eye on any site of operation. They felt better and had no further problems.

Reading all you've written I vote for you getting it taken out. It seems to me it will cause you many more problems if you just leave it.

I'm sorry you had such crappy docs who did it. No doctor in his/her right mind would do it then tell you that you don't need any more care! I think with us rsd'ers docs just want to cut us open and get rid of us telling us we're all better now, run along. That really ticks me off.

I don't know if anyone is around that has had it taken out here but I hope I've helped some.

Hugs,

Karen

 
Old 05-14-2009, 02:26 PM   #3
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Re: Spinal Cord Stim .....it's been awhile, but I'm back

Hello Karen!

It has been awhile and nice to hear from someone I at least know. Thanks for the information, I really appreciate it. Your response will help me further along with my decision. At this point maybe a few others will read this and also offer their opinions. This is a diffilcult decision, but in the end I do believe it will be for my own good.

Like I said before the original dr is MIA and the practice he used to work in won't release his whereabouts. That is sad and to make matters worse my original dr who helped place in the temp unit has decided to retire. I can't believe in four years how these dr's are disappearing when I figured I'd be with them for years. What a shame! So far I have been to some real "winners" and if I felt like flying to some third world country, let just any witch dr perform some kind of miracle, pay thousands of dollars I would associate those guys to them. This isn't a funny moment just truth! So this new dr I have met is such a "teddy bear" as my wife calls him. So soft spoken, honestly sound very sincere and genuinely concern about my comfort. So we are about to make that final plunge in surgery. More then likely i will call tomorrow.

Once again I do appreciate hearing from you. On a lighter note: How are you doing? Everything okay? We've had a rollercoaster ride for the last couple of years, but now things are settleing down, back to normal or whatever normal is. We deal with the pain everyday together. This just isn't me that is effected it is my family too. I do hope all is well and I hope you have pain free day!

Ben

 
Old 05-14-2009, 06:12 PM   #4
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Smile Re: Spinal Cord Stim .....it's been awhile, but I'm back

Hi Ben,

It's nice to see you back.

I think if I were you, I'd get it out too, but it sounds like you've made a decision already. If it's not helping you and it sounds like it's actually making you feel worse, it makes sense that you don't want a foreign object in your body for NO reason. So, that's what I would do...for what it's worth.

It's really nice to see you back here. Do I remember correctly that you and your wife were having a difficult time for a while? If so then I'm glad to hear things sound better between you guys. If I'm not remembering correctly, just ignore me .

Take care.

Sharon

 
Old 05-15-2009, 12:16 AM   #5
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Re: Spinal Cord Stim .....it's been awhile, but I'm back

Hi Ben,
I remember you. You were very helpful to us awhile ago. My husband had only the temporary trial of the SCS, but he had it twice, because they couldn't get coverage to his feet. Then they gave up and took out the leads, which had been put in really well, tied to the bone, I think. He did not have any infection problems or anything like that. But you got me thinking. He broke the transverse process of L4 in his accident in 1992. He is now having back problems, which we attributed to that. But his back pain has gotten significantly worse in the last few years. I am going to have to ask him if it got worse after the SCS trial, because the leads were placed in his lower back, which is where the problem is now. Interesting thought.
Glad to hear from you.
Sunny

Last edited by Sunnycal; 05-15-2009 at 12:19 AM.

 
Old 05-15-2009, 10:11 AM   #6
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Re: Spinal Cord Stim .....it's been awhile, but I'm back

Hi,
I am facing the possibility of having a stimulator put in. I can't seem to make up my
mind. I feel it is not right for me..help
Sandra

 
Old 05-15-2009, 04:24 PM   #7
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Re: Spinal Cord Stim .....it's been awhile, but I'm back

Hey Ben. Things here are going good. Have the ups and downs along with everyone else but not unbearably so. :-) We're getting ready for yet another hurricane season to begin as I'm sure you are too. I just love the unknown whether we'll get hit or not. *note the sarcasm dripping from the words* LOL

My kids are great. My oldest son Kenny(21 yrs) shipped out last October and is in Iraq. He is safe and just wants to be home. He married last May and a few days ago celebrated his first wedding anniversary. He was able to get 2 weeks leave though to be with his wife instead of an ocean apart.

My oldest daughter Heather is now pregnant, she's 19. She'll be having my first grandchild in just over a month now. I can't believe how time has flown by! Seems just yesterday I found out she was pregnant. She's having a boy who will be named Tristan Lee Wayne. The 2 middle names also belonging to my oldest son(Lee for middle name), and the soon to be daddy and my dad(Wayne for middle name). We're very excited and I can't wait to be grandma! I feel too young....only 39 for pete sake! LOL That's ok by me though. She'll be starting college in the fall to become a CSI, like on Miami CSI. :-D

My youngest son Brent just turned 18. He's a "adult" now. LOL Still a handful but that's him.

My "baby" Serena is 15 and looks me in the eye. I'm 5'2". So, a couple more years will complete the fact I have to look up to all my kids! ROFL I love being short so don't mind really. She's become quite an artist and boggles my mind with each new drawing she shows me.

Hugs,

Karen

 
Old 05-16-2009, 03:45 PM   #8
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Scrufysdad HB User
Re: Spinal Cord Stim .....it's been awhile, but I'm back

Awe, thanks so much you guys! So great to hear from you all. Now I am at my most comfortable and not forgotten! LOL

Yes, we have made up our minds to have the stimulator removed on Friday. I spoke to the "teddy bear" dr, as wife calls him; he will basically do what I ask. No pressure from him. Now I have to sit back, wait for the review board to approve this surgery then hopefully be comfortable in a few weeks. Fingers crossed!

Sunny, I remember when I had the temp unit removed, the dr bent me over and in one swoop yanked the cords out of my back. Sound aweful doesn't it, but I didn't feel a thing. Guess it was done too fast. I've experienced no problems that I can honestly say is associated with that. Both my wife and I are concerned though with the removal of the leads right now. The dr has assured me no problems would be caused, but still we are skeptical about any future situations developing from it.

Sharon, you are correct in what you remember. My wife and I did have a diffilcult time. The rollercoaster experience never goes away, but we have tried very hard to work thru our troubles. Since I have gotten hurt it is a sad thing to admit in the open but I lost alot of friends and my daughter. It seems that they aren't able to understand or accept the change that has happened to me. I can't do anything about it, but take each day as it comes. This entire RSD has changed my life so drastically, so you all know, but to have your daughter not speak to you is heartbreaking. It kills me everyday! Thank god that Cheryl (wife) is still by my side. We did consider separating, but in the end our devotion to each other, our vows were a very serious issue so that is why I say we work thru the problems each day. Of course, there is still screaming every now and then..........can you hear us!? LOL

Karen, Wow you have your hands full with all the kids and how fast they "grow" up. I wish your family well and congrats to the grandchild. That is going to be a wonderful experience for your entire family.

Sandra, It is a hard decision to make when it comes to the stimulator. Here on the boards we have tried to talk things thru. Have you tried the temp unit yet? You will have to go thru that trial period to see if it is even going to help your pain. My unit was placed in my 'butt", in my case I can't sit properly or even lay in bed. The dr who placed it into me did it too low and didn't set it in deep enough. That is where my problems lays. Talk to your dr extensively. Research the company, product and get as much info about the type of unit they use before you go and make any harsh decisions. People on this board will give you straight answers, but based on that you have to make the final choice. It is very scary to think what is going to help you. We all know this. If you research on this board, type in my name for past posts you will find info on my trial/perm unit placements. Go ahead and read on.....it is a wealth of information.


We are back in sunny South Florida and waiting to weather out any storm that comes our way. Last year we moved to Georgia, but it took quite a toll on my RSD. We just had to get back to warmer climate. So here we are!!!!!! You will see me back on these boards more and I really appreciate your warm responses. It's great to be back amongst old friends who understand.

Well, I must get going, but will keep you all abreast of what is happening with the surgery. Don't think I won't respond cause you can't keep me quiet. So with that I do wish you all a pain free day!
Ben

 
Old 05-16-2009, 05:20 PM   #9
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Smile Re: Spinal Cord Stim .....it's been awhile, but I'm back

Hi Ben,

That's great that you and your wife stuck it out. Good for you!

I'm very sorry about your daughter though.

Good luck on Friday. Let us know how you do.

Sharon

 
Old 05-17-2009, 11:33 AM   #10
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Re: Spinal Cord Stim .....it's been awhile, but I'm back

Ben,
I had written out the long saga of my SCS also to let you know that I am considering taking mine out also - this was before you posted your final decision to take yours out - then the computer gremlin ate my response (the power went out and my post didn't make it) I didn't have it in me to type all of that out again so I waited to do it until I wasn't so frustrated and was feeling a little bit better - and low and behold here's your answer!... I wish you the best...

The only thing that holds me back from having mine removed is that I would like to have it done as an INPATIENT rather than an outpatient - that or with epidural or longer lasting anesthesia on either side of the surgical wounds - I strongly believe that between the trial and both (yes, I've had my SCS revised 2 times -dummy me - I let the docs talk me into that - that was in my long story but part of that was the fact that I moved and was seeing a new doctor and since I only had one lead in from the first surgery I allowed my new doctor to talk me into a second lead and new placement of the first lead) well - my leads never stayed in place more than 3 months - from the first or second surgeries so for all of that pain and the spread I only got a total of 25% relief for periods of time and spread from only my right foot all the way up my leg and into my back and into my left leg and now even more. I know that the SCS is a God send for some people - but it seems to be mostly for upper body involvement - I've not spoken with anyone who is lower body or full body who has had long lasting relief. Now I am struggling with the same question that you have answered for yourself.

Oh - and I'm sorry for being so rude! Welcome back! I am looking forward to getting to know you as I'm new since you took your break... and say "hi" to your wife... I think this terrible disease process is bad enough for us - but I think even worse in ways for those who love us - it is terrible for them to watch and not understand and not be able to help us the way that they would really want to - so give her a big hug from me and tell her thanks for standing with you - I've got a honey who does his best to stand with me also, he doesn't always understand (the understanding comes from folks here) but he's always right there with me and that is how I make it through the worst days - when my strength is gone and the narcotics just don't seem to work... the love and worry in his eyes pulls me through... I hope that some day your daughter can understand and come back to you, sometimes that just takes maturity.
Let us know how Friday goes, We will be thinking of you!
Lissa

 
Old 05-17-2009, 03:29 PM   #11
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Scrufysdad HB User
Re: Spinal Cord Stim .....it's been awhile, but I'm back

I think I need to make a clarification on my last post. What I meant to say is that last Friday I made the final decision to have the unit removed. I didn't mean to imply that it was being taken out literally on Friday. There is so much paperwork involved and with my W/C they say it has to be approved first. So I must sit back, wait patiently for the powers that be to make a decision on my behalf to say.....Ok, we will allow it. So I hope you understand it was my typo. I will tell you all when the actual day of removal will be, but itsn't happening any time soon.

Sorry for the confusion.
Ben

 
Old 05-17-2009, 04:42 PM   #12
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Smile Re: Spinal Cord Stim .....it's been awhile, but I'm back

Hi Ben,

Thanks for the clarification. I've never dealt with WC, but I do know what a pain-in-the-neck they can be. I hope they will approve this ASAP for you.


Lissa, I so agree with what you said about illness being even more difficult on the people who love us. I've always said that. I'm usually in the "patient" role, but have been the "carer" a few times and it kills me to watch someone I love go through something that I have little to no effect on how it turns out for them...very hard. Both sides are difficult though.

Sharon

 
Old 05-18-2009, 06:21 PM   #13
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Re: Spinal Cord Stim .....it's been awhile, but I'm back

Hi,
I am back again. No I have not had my trial on the stimulator yet. I am participating in a trial at the Medical University of SC. I is called TMS (transcranial magnetic stimualtion)
So far I have had 3 treatments and I will do 3 more in 2 weeks. I have noticed that my pain levels have gone down a little. Having fewer 10 days. My pain level is still very high and hard to get around, but I really take advantage of my 4/5 days. I usually pay for them but it is worth it.
Let us know how your surgery goes. Good luck and hope all goes well.
Geezerbride

 
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