14 replies to this topic

[Billy Meyer]

Hi everybody. Im T-10 about 2 years post op. Since my surgery Ive dealt with daily pain during my recovery. Often the pain is horrible. When the pain is at it,s best it still sucks. Now that my spine has fused the hardware in my back is no longer necessary. Does anybody know anything about using hardware removal for pain management? Ive heard that once the steel is taken out of my back that my pain will decrease significantly. This would be so awesome. A lifetime of this kind of agony just isnt an option. I know all of you out there can relate and Im so sorry that we are all in this boat. Please clue me in if you have any knowledge about this. Hang tough everybody.

[LuckyinKentucky]

Everybody's different but I have heard of some getting them removed, but usually after they are causing a problem. I've had mine 4 years and have thought from time to time about checking it out but not really stoked about another major surgery. As for pain ya never know how it'll turn out.


Oh and welcome to the boards.

Edited by LuckyinKentucky, 26 January 2009 - 04:09 AM.

[jass1]

Everybody different but for me UTI increase my pain

[Billy Meyer]

jass1, on Jan 26 2009, 07:46 AM, said:

Everybody different but for me UTI increase my pain

Hey thanx for the welcome Lucky and Jass please forgive my ignorance but what is the "UTI" that you mentioned?

[Ches]

Uti= Urinary Tract Infection AkA Bladder infection.

I hate my rods, they limit my mobility, as if I didnt already have enough issues with that. Im terrified to get them removed, I dont want anyone or anything NEAR my cord. Nor do I want an ugly scar. Best thing Ive found to relieve all that built up tension/stiffness is the obvious stretches and some chiropratic manipulation.

With or without rods, not getting that natural decompression and lubrication between the bones can turn into major discomfort later. IMO its best to keep things working smoothly before its too late.

On another note, I asked my doctor about the tension that centralized just above and below the rods, I read CityGirl mentioning the possibilty of later complications, possibly a break from all the tension. I was told its completely possible and realistic if you don't take care of those bones incased with rods, especially for the more active crowd. It the long run, if you choose to keep your rods it will pay to pay a professional to keep you in shape.

[1heart4u]

I had my rods removed 1 year post. It relieved my pain. But now 2 1/2 years later I question my decision. The doctor really wanted me to keep the hardware. But, there were problems with my hardware which were discovered during surgery, a screw loose and a bracket off the rod. So for those reasons it was a good choice to have the hardware removed. Now I have a real problem with scoliosis below the level of injury, no muscles. After a recent MRI I have a neurosurgeon wanting to put hardware back in. I don't want hardware again because I remember, too well, the pain.
It is a tough decision. There are apparent reasons why the doctors prefer to leave the hardware in. Some of the reasons already discussed here on this thread. I will pray that your decision is guided by your higher power and that you and your doctors make the right choice for yourself.

[Billy Meyer]

Was it a significant decrease in pain.

[qman]

they are talking about taking mine out also.

i have rods from T11 to L4 and the length of my fixation is their (docs) concern that it is transferring to the joints at either end.

i havent had much problem with pain or even flexibility (surprising given the length) so i am reluctant to do it but also understand that it would probably lead to long term probs.

Q

[twisted_ophelia]

I want to have mine removed. Or at least improved somehow. I don't know if it's possible and it's also a slightly scary prospect. The pain is just ridiculous and I'm so tired of it. I'm very interested to hear stories from those who have had it removed and what the pros and cons were.

[Billy Meyer]

I hear ya guys. How long have you been dealing with the pain? Its only been about two years for me but it feels like a freakin eternity. If I beat you to the surgery I will tell you all about it. Im leary of it as well, probably for all the same reasons as everybody else but if it would take away the pain I,d probably have my head removed. Stay strong everybody.

[twisted_ophelia]

Billy Meyer, on Jan 30 2009, 02:37 AM, said:

I hear ya guys. How long have you been dealing with the pain? Its only been about two years for me but it feels like a freakin eternity. If I beat you to the surgery I will tell you all about it. Im leary of it as well, probably for all the same reasons as everybody else but if it would take away the pain I,d probably have my head removed. Stay strong everybody.

I've had chronic pain pretty much since my injury so it's been 11 years for me. There are days when it's better and days when it's extremely bad but it's just always consistently there. Playing around with the seating on my chair over the years has helped make it better (or worse!) and it's just something I've sort of learned to deal with. Either way, I'm not happy with the hardware being in there and because it's so significantly adds to the pain (though is not the only reason), a huge part of me simply wants it out. I'm currently on codeine-contin and have tried numerous other painkillers over the years and I'd like to not be on them, or take very little (not that I take a huge amount but still...)

Edited by twisted_ophelia, 30 January 2009 - 07:53 PM.

[Billy Meyer]

twisted_ophelia, on Jan 30 2009, 08:53 PM, said:

Billy Meyer, on Jan 30 2009, 02:37 AM, said:

I hear ya guys. How long have you been dealing with the pain? Its only been about two years for me but it feels like a freakin eternity. If I beat you to the surgery I will tell you all about it. Im leary of it as well, probably for all the same reasons as everybody else but if it would take away the pain I,d probably have my head removed. Stay strong everybody.

I've had chronic pain pretty much since my injury so it's been 11 years for me. There are days when it's better and days when it's extremely bad but it's just always consistently there. Playing around with the seating on my chair over the years has helped make it better (or worse!) and it's just something I've sort of learned to deal with. Either way, I'm not happy with the hardware being in there and because it's so significantly adds to the pain (though is not the only reason), a huge part of me simply wants it out. I'm currently on codeine-contin and have tried numerous other painkillers over the years and I'd like to not be on them, or take very little (not that I take a huge amount but still...)

My pain is exactly the same as what you described. I cant imagine living with it for 11 entire years. Your obviously pretty tough. You say that you know your hardware is a big part of the reason that you have pain. How do you know that? Something youve read? Has a doctor told you that? I havent heard anybody say that before. Ive only heard rumors. If I knew for sure that removal surgery would help lessen my pain I wouldnt wait another second.

[twisted_ophelia]

Billy Meyer, on Jan 31 2009, 02:01 AM, said:

twisted_ophelia, on Jan 30 2009, 08:53 PM, said:

Billy Meyer, on Jan 30 2009, 02:37 AM, said:

I hear ya guys. How long have you been dealing with the pain? Its only been about two years for me but it feels like a freakin eternity. If I beat you to the surgery I will tell you all about it. Im leary of it as well, probably for all the same reasons as everybody else but if it would take away the pain I,d probably have my head removed. Stay strong everybody.

I've had chronic pain pretty much since my injury so it's been 11 years for me. There are days when it's better and days when it's extremely bad but it's just always consistently there. Playing around with the seating on my chair over the years has helped make it better (or worse!) and it's just something I've sort of learned to deal with. Either way, I'm not happy with the hardware being in there and because it's so significantly adds to the pain (though is not the only reason), a huge part of me simply wants it out. I'm currently on codeine-contin and have tried numerous other painkillers over the years and I'd like to not be on them, or take very little (not that I take a huge amount but still...)

My pain is exactly the same as what you described. I cant imagine living with it for 11 entire years. Your obviously pretty tough. You say that you know your hardware is a big part of the reason that you have pain. How do you know that? Something youve read? Has a doctor told you that? I havent heard anybody say that before. Ive only heard rumors. If I knew for sure that removal surgery would help lessen my pain I wouldnt wait another second.

It's really tough some days but there's not a whole lot I can do about it so I've sort of learned to do the best I can but there are some days when being in constant pain is just a lot to bear. My neuro has said that the hardware is definitely contributing to the pain--though he is extremely reluctant to even talk to me about getting rid of the shit in there--but it's also just the damage done to my body from my injury that causes it, and then of course there's the neuropathic pain on top of all that junk. I find I am especially achy when I am cold or after a lot of activity. I'd also like to have more mobility.

Edited by twisted_ophelia, 31 January 2009 - 09:59 PM.

[Billy Meyer]

How about this one?- Because my legs are hanging down all day and my circulation is poor I collect alot of fluid in my calves. I once wore Ted hose overnight while I slept with the intention of moving the fluid back up and through then out of my body. It worked I pissed all over the place for the entire day. The pain that came along for the ride was so freakin horrible that I was laid up in bed for 2 1/2 days cursing god. I,d sooner glide through a parking lot full of razorblades and dirty needles on my face than ever put the Ted hose on again. Sometimes the fluid without any provocation will decide to work its way through on its own without warning. Its the same hell all over again. Has anybody dealt with this same nightmare? For all of your sakes I sincerely hope not.

[Jax]

qman, on Jan 29 2009, 06:32 PM, said:

they are talking about taking mine out also.

i have rods from T11 to L4 and the length of my fixation is their (docs) concern that it is transferring to the joints at either end.

i havent had much problem with pain or even flexibility (surprising given the length) so i am reluctant to do it but also understand that it would probably lead to long term probs.

Q

I have to ask this-how do you not have issues with flexibility? I was initially fixed from T10-L4, and had almost no flex. Then L4 broke, and now I'm fixed from T10-Pelvis (the x-rays look insane, like a porcupine), leaving me with complete lack of flex. My surgeon said that the extra stress on L4 caused the second break, and that part of that stress was caused by the simple stretches that I was taught by the physical therapist. How does one go about getting a surgeon to even consider taking out the hardware? I have asked my surgeon, but he sort of dodged the question with a reminder that it would take another major surgery, and did I really want to go through that. I didn't at the time, but this has got me thinking about it. It would make things a LOT easier.