Partial removal of hardware?

[scoliosis-mom]

Has anyone had a partial removal of hardware (part of a rod, hooks, screws) to alleviate pain?

My daughter had anterior/posterior spinal fusion 2 years ago and has had chronic pain, sometimes worse than usual.

We saw her surgeon in New York this week and he pinpointed 3 areas of hardware that are causing pain (2 hooks, 1 screw, and the top of a rod pushing through the skin).

He's not recommeding removal immediately, but said he would remove these items if she continues to have severe "flare-up" pain. He told us the hardware is irritating the muscle tissue and as others have said, "she is too thin". Well, she is - just 5 ft and 100 lbs.

She's been in the emergency room twice in the last month because of the pain, although it's better now.

We're taking a wait and see attitude, but we'd be interested to know if anyone else has had partial hardware removed.

She's 18, surgery at 16 - T-1 to L-2, anterior/posterior, 4 rods and more screws and hooks than I can count....

Thanks for sharing any experiences.

Susan

[AngelP]

I'd be interested to know what you find out about this. I definitely have one area that is very bothersome, sometimes more than others. It is an area where one of the screws is.

Is there any other treatment that can be done besides surgery. My surgery was 14 months ago, and I'd be very scared to have all the rods removed in fear of my curve getting worse again. Is there any way to be sure you are fused?

[scoliosis-mom]

AngelP,

Haven't heard from anyone yet who's had partial surgery.

My daughter's surgeon is thinking about just removing a few small pieces that are bothering her - 2 hooks, 1 screw, and about 2 inches of the top of a rod.

I was visiting a Physical Therapist yesterday for myself (neck strain from 10 hours a day in front of a computer) and told her about my daughter.

She thinks they may be able to help her relax her muscles as well as adjust her posture to improve the muscle tension.

We may try that and I'll let you know.

She's fused T1 to L2 (anterior/posterior), so it's a big fusion.

Take care and I'll post back.

Susan :)

[Jacque's Mom]

I had the top portion of my rod removed in 2000 by Dr. Sandhu at Hospital for Special Surgery in NYC. The reason was that the hook on the top of the rod was loose and irritating my muscles. He originally was going to take the entire rod out, but since it has been in my back since 1981, it was so fused to the spine, they just took out the portion that was giving me the problem. I have to be honest, it did help somewhat but I did have other issues with my back and had to go back in four months later and have part of my right scapular removed. Both of those surgeries combined helped with the pain. I never knew you could have the rods removed. Dr. Sandhu was quite surprised I still had the Harrington Rod in my back. Good luck. LYNN

[AngelP]

I am going back to the dr on Monday, so we will have to see what he says. When I was there in December my xrays looked wonderful, but it is very evident that the pain I am having is directly where one of the screws is. I did have a steroid injection which helped some, but it was expensive and I can't really afford this every couple months!

I'm hoping there is some answers besides having surgery again. I wonder if having pain from your hardware is fairly common?

[laurad]

Hi Susan,

I had my surgery a year ago at the age of 19 and after I got over the initial pain from the operation I was fine. For the first time in years I had hardly any pain and I was fine until about January of this year. I had a follow up appointment with my surgeon and he was happy with the progress I had made. It wasn't long after that appointment that I started having severe pain in the top of my spine, where the rods start, it also hurt all down my left shoulder and in the lower part of my spine, where the rods finish. I went to see three different GP's and each of them gave me a different type of painkiller and told me to wait to see if the pain went.

I was in such bad pain that I couldn't stand it any longer. So I made a private appointment to see my surgeon (I had the first operation paid by the NHS). He was very concerned that I was in so much pain and has recommended that I have the hardware taken out. He said that it was because I am so small that they are so pronounced. I'm only 43kg and I'm approximately 5' 3". So I know what it feels like to be in pain from the rods. I'm not sure if you feel the same but I find it hard to sit back on chairs because I can feel the rods in my back and it's very uncomfortable. I'm now waiting for a date for complete removal of all the hardware. I hope your daughters pain gets better soon, I know it's horrible to live with the pain.


Laura

[sweetness514]

I have had partial harware removed. I had the first surgery(scoliosis) in '97, and it took about two years to feel somewhat "comfortable" with having hardware, to heal sort of speak, even if to this day I feel the hardware, some days more than others. It's less the screws that I feel a lot but more the weight of the harware and fusion. In '99 the pain in my upper right side was so unbearable that they took out the screws and upper part of my right rod. It was an hour operation and it took me a few weeks to recover-a cakewalk compared to the first surgery. My doctor had come to the conclusion that the upper right hooks were giving me pain and he could take that part out after a year and a half, after injecting me with cortisone as a test before the surgery to see if the pain was EXACTLY at that place.

[sweetness514]

As far as sitting down, I always put on a cushion to rest my spine or else my back is not straight and there is hell to pay :eek:

[kates mom]

:confused: My daughter, Kate, had spinal fusion surgery in November of 2003, when she was 16. She was fused from T11-L3 with an anterior approach. It seemed like it took her longer to recover than what we expected and she was in more pain than we expected. Well, it's been almost 2 years now and she is still on Lortab for pain. We had been to her orthopaedic surgeon numerous times. He was mentioning the possibility of another surgery to remove her hardware, as that was what he THOUGHT was causing all the pain. It is also unclear on the X-ray and the CAT scan as to whether or not one of the fusions is completely fused. On her last visit he said that he highly recommends the surgery now. He also said he can't guarantee that the rod is the cause of her pain or that the surgery will take her pain away. She has consistently complained of pain just to the left of her spine right where the corner of the rod would be. More and more though, she is complaining about general, severe lower back pain as well. She is also thin, which her Doctor says might contribute to the pain. When she has "the rod pain" you can actually feel the rod when you press on the spot.
I want to thank you all for letting me vent here. I am so confused as to what to do for her. I feel helpless. If ANYONE has any ideas or thoughts on this, or if you have had your hardware removed, I would love to hear from you! Thanks again.

[sweetness514]

Kate's mom,

Like I said in a few previous posts I had the upper hooks on the right side removed- and it was the greatest thing I could do(short operation, short recovery). What the ortho did first was give me a shot of cortisone to see if that was the problem, right where the hooks were touching the top, a lot like you're describing. As for lower back pain, I HIGHLY recommend swimming, as strenghtening those muscles in a GENTLE way(I can't do sit ups or pilates, too rough on my spine) is very helpful. I would not have all the harware removed for now, but just that part if that is what is hurting her. Maybe you can ask her ortho to have the test with the shot of cortisone, and if she has no pain for a few says that means that is what the problem is.

[LindaRacine]

Hi...

Earlier today, when I was looking for something else, I came across a paper that I picked up years ago at an SRS meeting. It's title is "REMOVAL OF SPINAL INSTRUMENTATION: DOES IT HELP?" If anyone wants to see the entire paper, send an email to me at linda@scoliosislinks.com and I can email it to you.

Anyway, the bottom line was that out of 23 patients, 78% said their pain was cured or had improved. 5% had worse pain. For those with only partial removal, 92% said that their pain was cured or improved.

Regards,
Linda

[LindaRacine]

Since the scan of the paper mentioned in my post above created a rather large file, I put it up on my website for those who want to download it:

http://www.scoliosislinks.com/ImplantRemoval.pdf

[scoliosis-mom]

Linda,

I'm having some trouble opening that .pdf file. Can you verify the url?

Thanks,

Susan

[LindaRacine]

Hi Susan...

Yup, the URL works for me. Did you actually click on the URL in the message above? Do you have the latest copy of Adobe Acrobat? You can try sending an email to me (linda@scoliosislinks.com), and I'll send you a copy. However, if you're on a dial up connection, I must warn you that the file is rather large.

Regards,
Linda

[cammaltby]

Linda...Adobe wouldn't open for me off your link, so I went to you site directly and couldn't find it there either...what section did you put it in?

Thanks, Cam

[LindaRacine]

Hi Cam...

There's no link from my home page. Try sending me an email (linda@scoliosislinks.com) and hopefully you can open the one sent that way.

--Linda

[LindaRacine]

Hi...

It appears that the problem is that you're working with an older copy of Adobe Acrobat. Since I optimized the file to reduce the size, it can't be opened with older versions. To download the newest version:

http://www.adobe.com/products/acrobat/readstep2.html

Regards,
Linda

[trabensteine]

I have had partial hardware removed from my back as well. The lower right side rod had moved into the pelvic cavity and they removed it. I wasn't in pain when the rod was in there, but I have been in pain since they removed it. That was done in September of '04. I have also had the right rod pushing up through the skin and they removed the top part. That was earlier (2002) and it did not cause me any pain.

I was wondering if you have any suggestions that I might discuss with my doctor? I have been to two and neither of them have said much that could help.

Like you I am very tiny. I am 4'11 and 85lbs. This may be why I am having such discomfort, but I am not sure. I have Cerebral Palsy, which might also be a factor. It's so nice to hear there is someone out there with the same problems I do.

Write back and let me know of any suggestions you may have. Thank You,

~Thomas

[LindaRacine]

Hi Thomas...

The first questions I would ask is what they think is causing the pain, and if there is anything they can do to remedy it.

Regards,
Linda

[stephanie5683]

Hi all, I have two harrington rods with pins and all the works as well (97). I am having pin point unbelievable pain where one of my screws is. My PT suggests removal. I am in the Upstate NY area and my original surgeon wont see me because he only does pediatric scoli and I am now 23. Anyone know any good surgeons that will help me figure out whats going on...im desperate!!!!!!
Thanks,
Stephanie :confused: