When is revision surgery necessary?

[ugej]

This may seem like an obvious question, but under what circumstances are people having revisions? Is it for broken rods, loose wires, clearly pinched nerves between vertebrae?

I have the typical story: 2 harrington rods in 1984, donor bone from upper right pelvis. I led an active, athletic, pain-free life until last year (24 yrs after surgery) when I developed severe and chronic pain near the donor bone site, on the outside of my right hip and down the right upper leg. I saw 3 back surgeons (including the one who did the original surgery). I had MRIs, CT Scans, epidural injections, facet joint injections and nerve blocks. None of the procedures alleviated the pain. In fact all 3 guys said my back looks fine (as far as a scoliosis back goes!) and they did not think surgery would help. I didn't know where to turn, but finally found a physical therapist who diagnosed it as SI joint dysfunction, restrictive scar tissue around the donor sight, and basically myofascial pain (tight muscles) from overusing the wrong muscles to compensate for the curve and the surgery. I have not been able to stand on my feet or walk for more than 15 minutes since last summer. Very tough with 2 kids and a part-time job (thankfully from home).

I've been in physical therapy for 5 months now, with very little improvement. Not that I want more surgery, but has anyone had similar circumstances and had revision surgery? Also, if you didn't, and it really is muscular pain causing all this misery, what has been successful for folks on this sight? I cannot believe that I am only 41 years old and will have to live the rest of my life in this kind of pain and debilitated. It doesn't seem that complicated, but I"m having a tough time finding any relief at all. Pain meds are not an option. I absolutely checked out on my family for about a month when I was on all sorts of meds to try to control the pain. I want to "fix" this, and not just deal with the symptoms. Any advice would be appreciated.:confused:

[TerryB]

Hello,

I personally have been diagnosed with flatback syndrome which has caused pain for me now. I, too, have lost a great deal of function very quickly. How low does your fusion go?

TerryB

[LindaRacine]

Hi...

I think just about everyone who has revision surgery does so because of pain. Only you can know if/when it's right for you. My only advice would be to try to find a specialist who has a lot of experience in treating patients with prior fusions, otherwise you're just going to continue hearing the same crap you've been hearing from the other doctors. There is almost always a surgical solution to pain.

Good luck.

Regards,
Linda

[ugej]

I am fused down to L3. I guess I am very nervous about going through another major surgery if they can't pinpoint the pain as being caused by something in my spine. I can't imagine being fused down to the sacrum, and then waking up to find that I have the same leg/hip pain as before. What a mess these old surgeries turned out to be. Most of my pain seems to be around the donor sight (upper right iliac crest), so I"m wondering if it's tight scar tissue contorting my hip/leg, restricting motion, and causing pain. Anyone out there have this issue, and found treatment that helps? I saw something on "The Drs." show this morning on TV about actually having surgery to remove scar tissue. That I wouldn't mind before fusing more!

I had an appointment with Dr. Boachie in New York, but cancelled it after all my tests and procedures didn't seem to point to the spine as the source of pain. I may have to reschedule that $600 appointment (gulp).

[LindaRacine]

Hi...

I think that discograms are usually very successful in diagnosing the cause of spinal pain.

--Linda

[rainbow2010]

I had revision surgery because my fusion had continued to grow and was pressing on the nerves so I couldn't walk because of pain. When they removed the extra fusion, they tore the sack around my spinal column. The doctor had to pack it with silk and use silk stitiches (I'm allergic to the type of dissolving stitches they had at the hospital). It has left a lot of scar tissue in the area that is causing pain. Next time I go to my pain doctor, I will be talking to him about it. I also have pain in the hip where my original surgeon took bone for my fusion. I have arthritis in the area that they feel is causing my pain. When my daughter had her scoliosis surgery, her doctor used donor bone so she wouldn't have hip pain.

[ugej]

Rainbow,
Keep me posted on what they say about your hip. Is there nothing we can do but take pain medication for the rest of our lives? It's crazy. Is it the scar tissue that is causing the pain? I'm 41 and there doesn't seem to be any evidence of arthritis, just lots of pain in that general area. My back itself, doesn't hurt. I'd love to hear from people that have had this pain and resolved it. We need some hope here! I'm not sure revision surgery will affect the donor site pain. I went back to see the original doctor who did my surgery 25 years ago. He couldn't get me out of his office fast enough! I think by now, he too has figured out that these old surgeries did not have good long-term benefits. Not his fault 25 years ago. I just got the sense he was looking at me like...You're screwed...

[hobbit_str8ter]

I had my original scoliosis surgery with Harrington Rods and fusion at Boston Children's Hospital (Dr. John Hall) in 1977 at age 20. I believe it went from T1 to T12 with bone taken from right pelvis. I led a very active lifestyle after surgery (backpacking, bicycling, hiking). About 2001 I started to notice numbness and tingling in left leg while standing still or slowly walking but did nothing for about 4 years hoping it would diminish. I modified my lifestyle by sitting when things got bad. In 2004 I went for xrays and CT scan and was told I had degenerative disks from L1 to S1 which were likely causing the problem. After 4 more years of increasing numbness and tingling I considered revision surgery to replace bad disks.

I checked New England Baptist Hospital web site for spine surgeons and found Dr. Frank Rand. He worked at Children's Hosp in 1986 when Dr. Hall was still actively involved in scoliosis surgery. Seeing the connection between Dr. Rand and Dr. Hall, I scheduled appt with Dr. Rand in November 2008. His suggestion was anterior and posterior disk replacement and fusion surgery which I scheduled for Feb. 16, 2009. I was worried about the procedure but knew that doing nothing was worse than having the surgery.

My surgery lasted about 11 hrs and involved 3 disk replacements with additional rods, donor bone from left pelvis, and fusion from T12 (overlapped previous surgery by one vertebrae) to S1. Despite this large-scale surgery, I was walking briefly the day after surgery and was discharged to home 6 days after surgery.

After standing for more than 30 minutes at a time at home, the surgery has aleviated my numbness and tingling and I'm looking forward to complete recovery during next 2-4 months.

Hope this info helps you make a decision.

Good luck.

[ugej]

Hobbit,
What fantastic news for you! I've been in chronic pain for 8 months and cannot be on my feet for more than a few minutes at a time, so believe me, I've had it. My problem is not numbness, but pain in the right groin, right hip/pelvic area and down the right IT band. My xrays and CT scans don't show very much, so the 3 back doctors I have seen so far don't see any need for further surgery, just PT, which I have tried for the entire time. I do have an appointment in 3 weeks with Dr. Boachie in NYC, who is a scoliosis specialist. Believe me, I'm all for the surgery so long as there is some logical connection between more fusion and lessening the pain. I'm more afraid of him saying, there's nothing that can be done, live with the pain. I also afraid of massive surgery and then still having the pain. I will post after I see him on 3/26 and let you know the results and go from there.

Hobbit, were you on pain medication during these past few years before the revision? If so, what seemed to help you?

[hobbit_str8ter]

Pain meds did not help so I did not use any...I just sat for a few minutes and the symptons lessened but I was distraught because the problems did not stop. I suppose that if there was a pain med that helped, I probably would have put off the surgery for a longer period of time. I hope that you find relief in some type of treatment or surgery.

I'm sure you've suffered greatly with your situation but I would highly recommend seeing Dr. Rand if you need another opinion. He does schedule several months in advance but I know he gets some cancellations and maybe one could time out in your favor.

Wish you the best.

Hobbit (old college knickname)

[ugej]

Thanks. I have not found relief through pain meds either. In fact, I went further downhill. I was so non-functional, and felt that it would be better to be in pain, but cognizant around my kids, than be in a constant fog. I don't seem to tolerate them well. I just wanted to get enough relief to resume some normal activities like walking around a grocery store, etc. No such luck! Thank you for the recommendation about Dr. Rand. I won't go ahead without seeking out some other opinions. I am really hoping Dr. Boachie can help. I have tried physical therapy, yoga, massage, myofascial release, and nothing seems to help, even though I'm being told it's muscular and not structural issues that are causing the pain.

Keep us posted on your progress. That's a great sign that you are on this forum posting 3-4 weeks after your surgery.

[rainbow2010]

I went to a doctor that specializes in adult scoliosis and the aging spine. He sent me on to a doctor that specializes in brain and spine rehab. He has done nerve ablations to stop some of my pain. I also use a heating pad for pain. I work out at a therapy pool where they keep the water at 90 degrees. I do leg lifts to the front, side, and back and use the elliptical and treadmill in the pool. They help a great deal in controlling the pain.

[ugej]

Rainbow,
I'm curious. What prompted the revision surgery you had in 2002, and is the physical therapy you were discussing relating to pain you have since the 2nd surgery? Did you feel the 2nd surgery fixed whatever problems you were having at the time? Thanks. I would love a non-surgical option to my pain, but I've been to water therapy, land therapy, etc, for months and nothing seems to help. Do you take any regular medications now to control the pain?

[rainbow2010]

My revision surgery was due to the fact I couldn't walk anymore! My fusion had kept growing and extended itself to S1 (my fusion stopped at L5). It was pressing on my nerves and had attached to the membrane over my spinal cord. I got instant relief from my surgery, no more pain. Then scar tissue, arthritis, degenerating discs took over. I have had a few nerve ablations to stop some of my pain. I workout 4 times a week in a heated pool (90 degrees) to keep my muscles strong and to keep flexable, and use my heating pad a lot (every evening). On real bad days I take Tramadol. I have a very hard time with pain medicine. I am alergic to codine and most medicines give me a bad headache.

[macky]

I am going through exactly the same as all of you., Pain since 1997. I am on very strong pain meds and my pain breaks through so I do not take any more tablets as if I do increase it wont be all that long until the pain breaks through that level as well. So what I am saying, dont even start on that road.

Its just so frustrating isnt it. I am like a lot of you the CT scan shows that the rods are in the same place and havent moved and the MRI shows the same. I think I will get a discogram as suggested by Linda and see if that shows anything.

I laughed when one of you said that the doctor nearly ran the other way as honestly that is what has happened to me. They are faced with a problem and have not got a clue in what basket to put me in.

I have been so interested in where the bone was taken to fuse the spine as that is where some of my pain seems to coming from. So I gather that from what you wonderful people have explained, that maybe one of my painy bits probably explained. These forums are great arent they, as to be able to talk to other people about it really helps. Thankyou all so much.

I cant help a lot ,but you have all helped me to stop thinking that I am slowly going crazy.

Bless you
Macky

[cherrybird]

Although I wouldn't wish this pain on anyone it has bought me relief to see that I'm not the only person suffering with scoliosis pain at the moment. I currently have intermittent numbness in my left leg and extreme pain when trying to put pressure on it so am hobbling about on crutches. I have been told that discs 4 & 5 have shattered and there is disc matter floating about somewhere in there. I am taking tramadol, ibuprofen and paracetamol on a daily basis combined with a tens machine and heat treatments but it's no way to live, it's just existing from day to day. Even the tramadol doesn't seem so effective any more. Before this there was talk of revision surgery, but I feel i'm pinning all my hopes on this as I can't see anything else that can might be effective.
Claire