Take out rods???

[mocity]

I had severe scoliosis when I was young and wore a back brace for 5 years. Then, my spine kept curving in two different places so I had the surgery to put the rods/hooks in and the spinal fusion. As I have gotten older I am having back/hip pain and stiffness. I had the surgery in 1989 (when I was 17) and now I am 34. I went to one doctor that suggested having the rods taken out. WHAT? I had never heard of this nor did anyone suggest this might be the case at some point. The doctor that performed my surgery has since retired. I have an appt with another doctor at the beggining of December. Has anyone heard of this? I am curious about the severity of this surgery (anything like the first) and whether people have had any complications after having the rods taken out. Also, maybe I just live with the pain I have now as I can still function pretty well. Any information/suggestions, etc. would be appreciated.

[sweetness514]

Wether you have pain or not right now, I would never consider having rods taken out as the curves might come back, and you can have pseudoarthritis at some point. Especially you who has still a functioning life. Removing a part that doesn't affect the curvature may help in some cases if the pain is located, but that's it. I think the siffness comes from the fusion, not so much the rods.

[Jacque's Mom]

Mocity,
Go to Search and type in "rod removal" and you'll see lots of discussions as some have had them removed or thinking of having them removed. Apparently it is quite common. I too was quite surprised when it was suggested to me as I never heard of that either. Good luck. LYNN

[Ken]

Hi Mocity - I had surgery in 86 & I'm 37 - The doctor I had has also retired - I have not had any major problems with the hardware and was told by my new doctor NOT to take it out unless I absolutley need to - He says even if it breaks, unless it would cause more damage - Leave It In!! I do not have the benefit of knowing why your doctor is suggesting this to you, so perpaps you should get a 2nd opinion from a spine specialist? My problems of late are my lower back <argh> Hope this info helps - feel free to email me. :)

[mocity]

Thanks Ken. I tried to email you but it wouldn't allow me too. I was having pain in my right hip and went to a new doctor. At the time I was in alot of pain and my leg and foot kept going numb. However, after about 3 months this pain has decreased significantly. When I was in pain that doc suggested taking the rods out. Although that doc has a wonderful reputation in Houston, I wasn't that impressed and now have another appt in December with the doc that took over my old doc's practice. I am 34 so around your age. Now, I am having pain in my shoulders/neck and lower back. Also, I have noticed my neck is very stiff and I have a hard time turning around. Could some of this just be the fact that we are getting older? At this point and since we have lived with back pain for so long.... it is hard for me to know if it is "normal" pain or pain steming from my back problems.

[sweetness514]

Mocity...

When some of the spine is fused then the rest of the vertebreas that are not fused will suffer-there's no way to get out of it. DDD or pinched nerves(bulging disks, hernias, etc) are a result. I have had upper back an neck problems before the surgery, but ever since I had the surgery it has gotten much worse. I can get really stiff too, holding my spine straight. I'm 34 as well, had my first surgery at 26.

I went to seek acupuncture treatments, PT exercises and massages. All helped but it's still a reality.

[mattie]

I had two rods and 17 screws put in in Sept.2004. I had a screw come loose and pushed the end of one rod out. It was causing me severe pain. I went to my Dr. for my yearly visit and he said he would take the rods out and I would be fine. He said my spine was fused and reassured me I would not get my curvature back.I had everything taken out Sept 22 2005. I felt fine besides the constant neck pain. I went back to him in two weeks to have my staples removed (57 of them). He x-rayed me and said my curvature was back and I either was not fused completely or I was not healed enough, that he has to put the rods and screws back in. I go in tomorrow and have them put back in. He is going to put longer rods in this time and try for a better fusion. If at all possible don't have them taken out, if you are not 100% sure your fused. I would not wish this on anyone. It is the worst thing I have ever been through. I just start healing up and I am back in getting cut on again.
Think it over long and hard before you have them taken out. If you do I wish you the best of luck. That is just my point of view of having rods removed.

[judyk]

Mattie,
I am so sorry for all you have been through. Good luck on your surgery and may God bless.
Judyk

[Ken]

Mattie - I'll be sure to say a prayer for you!!! Take care & God speed :)

Mocity - my email is: askforken@aol.com - hope to hear from you! :D

[jojohull]

Hi everyone,
I had my spine fused (thoracic) back in 1975, doesn't seem that long ago! My surgeon died in the 1990's. I had been very fit and well up to 7/8 years ago.(I'm now 48) I stopped training, step, swimming etc as I was getting so much pain, mainly in my lower back, and hips. I also have numbness in my left inner leg for which I have been prescribed Gabapentin, still have it. Various painkillers, even Prozac :( I trained upto 4 times a week, looking back it was probably making me develop more stress on my lower vertabraes. I should have done gentler exercise.
Since the training stopped I have piled on the weight which can't be good eh?

I saw an ortho surgeon who suggested I had the rod removed, as it may help a little. I then saw another surgeon, for a second opinion, who listed the things that could go wrong and that, at worst, I could end up in a wheel chair! He was very blunt and it upset me a lot at the time. He did tell me that bone growth surrounding the Rod could be dangerous to remove.
Surgery has advanced so much since then.

I'm glad now that the 'Rod' is still in place because I don't think it was causing any extra pain in the first place. But I can say that in hindsight.
I have been lucky in that I reached my 40's in good health. Have 2 grown up healthy boys with great pregnancies.
I am now waiting for accupuncture- I'll let you know how I get along.
Sorry for rambling on :)

[Jacque's Mom]

Jojohull,
I was supposed to have my entire rod removed in 2000, but when they got in there, they only removed about 3 inches from the top as it was so fused to my spine, they said it would have been too dangerous to do so. A procedure that was only to take not even a hour to take out the entire rod, took over three hours to take our 3 inches! I had my original surgery in 1981.
Lynn

[Gigi060]

Mocity,

I've been to about 6 different surgeons and all but one agree that taking the rods out would be very dangerous. I had a fusion from T6 to L3 in 1985 and then this year they extended my fusion to T3 to L3. The recovery time on my first surgery was about 1 month, to be honest. Of course the fusion hadn't healed for 1 year but I felt great after 1 month. Of course I was young then. Now I'm 32 and my second surgery has had me down for 6 months. I am contemplating having the new portion of the rods removed because there is a lot of crowding and the muscle spasms are horrible. This is just an option I am looking at, haven't made up my mind yet. All I know is the pain I am in now is worse than I expected and I definetly open to suggestions.

[sweetness514]

Gigi...

Maybe you can wait at least a year to see if the top part hurts still, and then have a cortisone shot there to see if that is causing pain, as I did. I am fused from T5 to L2(still am), but after a year and 4 months post op, the pain on the upper/right side was really hurting and I had that hook taken out. Was pain free for years after that procedure done.

[HGD24]

mocity,
I am 30 years old and just 9 months post-op, but I did have a lot of lower back/hip stiffness and pain after my surgery. At 4 months post op, everything else was healing amazingly well. I talked with my surgeon and we agreed on sending me to physical therapy. After just 3 appts. I noticed a significant decrease in the level of stiffness and pain and was so happy at the end of the 6 weeks with the results. I've since discovered that working out the abdominal and lower back area will be a life-long committment. Through work, I know of two women who are 17 and 30 years post-op, who are now going to physical therapy to help alleviate some stiffness and pain.

Could physical therapy be an option for you before deciding on another surgery?

[slprncess]

I have had my rods taken out and put back in a couple of times. I had my first surgery in 1995. They fused me from T1-L3. My rod broke in 2000. I was having terrible pain then. They repaired the broken rod and took out the remaing portions of the rods. It was a major surgery, like the original one that i had. It was very painful and i was in the hospital for 10 days. So in answer to your question yes it will be a major surgery depending on how fused you are. Ever since that surgery i have been having major pain in my lower back and down my legs. I had another surgery in march of this year. They took back out the rods, b/c they thought that they may be pinching one of my nerves. Well that surgery didnt help. Then i had another surgery in aug of this year b/c they found that at T10-11 i had a crack in my fusion. So they put back in rods. So now i have rods back in. Now i am going in for another surgery at the beginning of next year for fusion of L 4-5 S1 because all of the pressure from all my discs being fused is putting pressure on those discs.

I would get a few different opinions on this. I would make sure that this is necessary before you do it, b/c i have had so many problems with them being in and out. Also remember the more surgeries you have the more scar tissue forms. Ask the ortho if there are future surgeries if you do take them out. I have a feeling that maybe since you are fused, it puts pressure on everything below. This is what my doctor explained to me. He put it as a gravity thing which makes since.
I hope this info has helped from my experiences. If you would like a name of a good surgeon i know of one in california if you would like to come out here for a second opinion.

Take care,
Sarah

[Jen Q]

Hi Mocity.

I had Rod put in in 1985 at age 17 I am now 38 things have gone really well for me up until the last three or four months with a severe increase in pain

My Doc recomended rods stay in as to dangerous to remove I have a full length rod with only about 3 vertibrae remaining unfused, these have significant wear. I have been desperate to find some form of relief as the pain has been unbearable.
I have began diet changes that include low acid diet this has helped significantly, from what I understand this works similar to the principle of how a diet high in acids often causes a person who suffers from gout to have re occuring bouts. I have cut out all sugar as my father said this eliminated a large amount of his pain that was due to bad arthritis. I had severe pain in the left hip that kept me awake most of the night this has all but stopped I can tell you I am most grateful. The pain in my back is also asociated with a large amount of swelling all down the left side from under my rib down to just past my hip I have spoken with numerous people in the natural profession that have said this can be a sign of low magnesium / minerals which can cause muscle spasm hence the pain.I think those of you that have lived with severe pain know that in the end you are willing to try all sorts of things in search of some form of relief especially when the medical proffesion has done all they can. I hope I dont sound like a nut but these things have definitley helped. I have noticed I need to be quite strict to get consistent results Maybe try consulting a naturopath for ideas you may not agree with all of them but you can pick and choose the things you wish to try and find what works for you.

All the best I hope some of this may help

[jo1979]

Hi

I had a spinal fusion in 1993 and in 1996 i had my rod removed, my surgeons reason was that is was "tought" that was it!
I have been great, i have a 4year old son and the pregancy was fine.
Last year however i began to get upper back pain and noticed that my clothes were hanging different, my partner and parents agreed.
I have since been back to see my consultant and he said that i have de-generative area where i am saying the pain is. But he seemed puzzled as to why it is like it there as it is meant to be fused? he also thinks that i have started to re-curve but never had an old xray to compare.
I have since had physio and only had three sessions as the physio thinks it's more a joint problem than a muscle problem (which i already know!)
I am due to see the consultant again on 13th April, i just want an end to this pain and constant pill popping! as i said i have a child a day to day life is really hard going somedays! Still i know that there are people much worse of than myself!!

My opinion to anyone thinking about having their rod removed is to seriously think about it. If i knew that this would be happening 10 years later i might of thought twice. I am only 26 years old and would like to think that the old spine has many a good few years left!!

Sorry to go on and on!! :)

[LindaRacine]

Here's a new study abstract on this topic:

Spine. 2006 Jan 1;31(1):67-72.

Loss of coronal correction following instrumentation removal in adolescent idiopathic scoliosis.

Potter BK, Kirk KL, Shah SA, Kuklo TR.

Department of Orthopaedics and Rehabilitation, Walter Reed Army Medical Center, Washington, DC 20307, USA.

STUDY DESIGN: Retrospective radiographic analysis of patients with adolescent idiopathic scoliosis (AIS) status after instrumentation removal. OBJECTIVE: To evaluate the effect of instrumentation removal in surgically corrected AIS. SUMMARY OF BACKGROUND DATA: Spinal instrumentation is occasionally removed for various reasons, most commonly for postoperative pain or infection, in surgically corrected AIS. The fate of instrumentation removal in adults has been previously reported with documented loss of sagittal alignment. However, to our knowledge, the long-term follow-up after instrumentation removal in AIS has not been reported. METHODS: We retrospectively reviewed the preoperative, pre-instrumentation removal, postoperative following instrumentation removal, and latest follow-up radiographs of all patients with a primary diagnosis of AIS who underwent instrumentation removal after posterior spinal fusion. There were 21 patients (15 females, 6 males) from 2 institutions, at an average age of 14.8 years (range 9-19), who were originally treated between 1988 and 2002. Instrumentation removal occurred at an average of 2.4 years after surgery (range 8 months to 4 years, 2 months), with an average follow-up of 5.2 years (range 2-11). Fifteen patients underwent removal secondary to pain (2 of these with undetected infection) and 6 for known infection. Evaluation included coronal proximal thoracic, main thoracic, thoracolumbar/lumbar (TL/L), and sagittal T2-T5, T5-T12, T2-T12, T10-L2, T12-S1, and sagittal balance before surgery, before instrumentation removal, at immediate post-removal evaluation, and at latest follow-up. RESULTS: There were 12 main thoracic curves (Lenke type 1), 6 double thoracic curves (Lenke type 2), and 3 double major curves (Lenke type 3) in the series. Average proximal thoracic curve was 19.7 degrees (range 5 degrees -35 degrees ), the main thoracic curve 63.3 (range 42 degrees -112 degrees ), and the TL-L curve averaged 31.4 degrees (range 17 degrees -53 degrees ). There was an immediate loss of approximately 4 degrees (range 0 degrees -8 degrees ) in the main thoracic curve and 6 degrees (range 1 degrees -15 degrees ) in the TL/L curve after removal, with continued settling of an additional 6 degrees (10 degrees total, P = 0.002) in the main thoracic curve, and 3 degrees in the TL/L curve (9 degrees total, P = 0.01). There was also a significant difference in the group that underwent instrumentation removal <2 years after surgery compared to >2 years (main thoracic curve 13 degrees vs. 7 degrees , P = 0.017; TL/L 11 degrees vs. 7 degrees , P = 0.036). There were no significant changes in sagittal curvature or sagittal balance in either group (P > 0.39). CONCLUSIONS: Instrumentation removal in AIS is not always a benign process because the long-term follow-up of this cohort of patients shows a "settling" effect in the coronal plane of the main thoracic and TL/L curves after instrumentation removal. Interestingly, there was no change in the sagittal plane with time. Parents and patients should be counseled for this result when instrumentation removal is contemplated, and limited removal of focally symptomatic implants should be considered.

[sweetness514]

The low acid diet and cutting on bad sugar and carbs I have found help for any type of pain, as well as not eating too much. When I do, or eat a lot of tomato based foods, it gives me acid and back pain.

The thing about rod removal is a hard one. If we have them taken out, there is a risk of the curve returning. If we get them replaced in case of a rod breakage(like I just have had done), there is a chance that the rod can break again later on, if the fusion fails.

[crystals4502]

hi i have a broken fusion with my one rod poking out of my back you can see it actually sticking out. i had surgery whaen i was 13 i am now 25. my fusion broke at 1 year after surgery.i have been dealing with pain since then and it has been something i was dealing with leading a normal life until the correction kept getting worse. i had a 83 degree at the top and a 40 at the bottom. over time things just kept getting out of place. about 2 years ago is when the rod started to poke through. and the pain just got worse and was getting harder to deal with. i never heard of getting the rods removed either until i found this website. last year i finally broke down and went to the doc due to the fact that the first surgery was enough pain i didnt want to do it again. the doc ordered therpy. didnt work. next step would be to have 3 surgerys!!! needless to say i got a second opinion. this doc could fix me in 1 sugery. take the rods out break fuison and put new rods in. all in one. he also said that discs are also prob out due to lower back pain which u are having also since the fusion is broke it is no longer holding the discs in place. so what i am trying to say is it has been done many times and i wish i would of had mine fixed long ago instead of putting it off until now due to the fact that the rods are ten times worse now then when i first started to have the pain. its a tough decsion Good luck :)

[mattie]

Crystals4502
I wish you the best. Finding a good Dr. and one you trust is the most inportant thing in my opinion. I know some of us put off having surgery until we have no choice. I know I did. No one wants to be cut on especially more than once. I hope everything turns out great for you. It is a tough decision to make.
Mattie

[rmcginnnis]

I had my first surgery in 1989 also. Two years later I had to have the rods removed because my body was rejecting them and caused an infection. I have had regular check ups and there has been no curve progression at all. I recently took part in a patient study of people who had their rods removed to see if there were any progressions. There were about 50 of us and the report I received after the study said that more than half of the patients had curve progression and needed to seek medical care. I was one of the lucky ones I guess. I have chronic back pain. It seems to get worse as the years go by, but there's not really much to do for it except for Ibuprofen.

[Alaskan]

Hello mocity,

Like you I had my surgery in 1989. I had pretty much all of my spine fused exept for the lower three vertebre. I have broken hardware (in my lower spine) and my sugeon suggested having all of it taken out and new hardware put in! Having had my c d instrumentation in for that long has me concerned. I'm going to pain managment and it is working for me. I'm only 31, so i am constantly thinking about the long term effects of medication! My lower back did not fuse, my doctor said my spine is progressing at 2 degree per year (main curve is 60 degree) so it's a matter of when, not if! All i know is i'm terrified of having another 24" incision on my back and the pain, and the what ifs! I understand your concern for rod removal, good luck and god bless!! Chris

Prncess, you are one tough person! Hope you feel better!

[PNUTTRO]

Hi mocity

Have you gotten a second, third, opinion?