Good news from a recent study of scoliosis spinal fusion patients!
According to this new release from the Hospital for Special Surgery in New York City, a small study of 20 scoliosis fusion patients indicates little to no degeneration 10 years post-op.
New instrumentation is credited with allowing "...the spine to be corrected in a much more natural, physiologic way..." This is one of just a few studies that have examined how scoliosis patients fare years after surgery.
While this report is encouraging, 10 years is not long enough to accurately predict what may happen in the long-term, IMHO. Ten years after my scoliosis surgery (with the now-antiquated Harrington rod), I was doing great, too. It has only been within the past few years (almost 30 years post-op) that I have felt the accumulative affects of degeneration and flatback syndrome. But, hopefully, this is the beginning of a trend to track scoliosis fusion patients as they age.
3 years ago
Hi Maria - Just happened across your blog while goggling flatback syndrome. Excited to write to you with a lot to share with anyone who is suffering with flatback. I had scolosis surgery in 1978 (age 15). I too spent 4 months in the middle of my parents living room in a body cast. Learning to walk again was the most challenging part of that experience. I will never forget standing up for the 1st time after laying down for 4 months. I felt like a GIANT baby. Two years later the herrington rod was removed because it had detached from the bottom hook. The surgeon removed the rod because it was protruding outward. It was not uncomfortable but he said the fusion was solid and the rod had served its purpose and could be removed. That surgery was not bad. I wore a fiberglass cast for 4 months afterwards only because the surgeon decided to refuse a very small weak area of the original fusion. I had my 1st child in 1987 and it was not until after he was born that I started having back problems. I gradually started started to lean forward and when he was about 2 yrs the leaning was very obvious and the back pain aches increased, enough discomfort that I saw two different surgeons. I remember one of them recommending surgery but suggested I put it off a year because my son was so young. By the time he was 3yrs old I was pregnant again. It was after my daughter was born that I really started to lean forward (loved your example of the folded lawn chair - exactly what I was starting to look like). I had gone from standing straight at 6'3" to 5'10 bent over at the waist and my one of my legs always in a wierd position to help counter-balance the lean. The lower back pain was sometimes very uncomforatble. I worked in the emergency room of a hospital and people would always say to me "you look like you need to see a doctor yourself". That only bothered me as a sudden reminder of my appearance to others on the days thought I was looking pretty good (LOL). When my daughter was 4yrs old I was very fortunate to find Dr. Kieth Bridwell (BJC Hospital/ Washington University School of Med)an expert/teaching surgeon on my condition right in my backyard. He was the one that diagnosed me with flatback. In November 1994 Dr. Bridwell performed two surgeries on me. The two surgeries were 5 days apart and each one took 10 hours. One of the surgeries was done working on the interior side of my spine by making an incision on my left side he cut me along my natural waistline. The scar is long but because of the way he did it it blends with my waistline (very clever). The other surgery was done opening my old scar on on my spine. During the two surgeries Dr. Bridwell and his team broke up and removed all of the fusion and realigned my spine using pedicle screws. What he did was an absolute miracle. Four days after the 2nd surgery I stood up straight with a very natural looking inward curve in my lower spine. I will never forget that day they showed me my side view in the post-op xray. I could not belive it was me. It has now been over 16 yrs and I am still standing straight. I do have back aches now and then but nothing horrible. Other than not riding roller coasters I have no limitations. My lower spine is fused so I am not flexible to bend from side to side or bend backwards. I can even lay on my stomach, prop my head up with my hands (hands up/elbows down) and watch tv - may sound silly but pretty impressive for anyone who suffers from flatback. Anyway I just wanted to share my story with you and your followers. I have some pictures I can share just have to dig them out if anyone is interested. I am so very pleased with my results and anytime I see someone that is obviously suffering with a low back problem that causes them to lean I just want to reach out and tell them there is hope. I look forward to reading your blog archives and if interested, I can be found on facebook. Cindy Heideman P.S. I did give you a "like/thumbs-up" on Facebook.
ReplyDeleteCindy:
ReplyDeleteThanks for sharing your story - and for the Facebook "like." I'm so glad that things have worked out well for you. Were your surgeries with Dr. Bridwell considered "revisionist?"
Take care,
Maria
Hi Maria - So happy to hear from you. I am new at blogging so was not sure if you ever even received my comment. I don't recall Dr. Bridwell ever using the word "revisionist". His explanation prior to the surgical procedures was that he would break up and remove the old fusion(from 1978) and refuse my spine.
ReplyDeleteDuring the two surgical procedures he was able to correct the flatback deformity AND improve the degree of my scoliosis curve even more so than the reduction post-op 1978. So, with that being said would one call the procedures a revision?
I look forward to following your blog. With inspiration after reading your page (and really not being sure if you would ever get my comment/story)I started my own blog. Being able to help someone else by providing support and sharing my experience would be an awesome opportunity for me to repay the many blessings received throughout some very difficult and painful times from my scoliosis pages of life. Thank you for sharing. Sincerely, Cindy
Hi again, Cindy:
ReplyDeleteStarting your own blog is a great idea, Cindy. I'm sure a lot of people would be interested to hear about your experience. Be sure to send me a link to add to my blog roll!
Take care,
Maria
Here is the link Maria:
ReplyDeletehttp://justspine.blogspot.com/
Don't think I wrote as much there as I did in the original comment to you and have not had any comments. I would like to post a before and after picture on there eventually. Of course I still am not sure how or what I am doing on blogger yet. I will eventually figure it out (still not sure how to leave a comment as myself rather than "Anonymous"). Just takes time. Thanks for asking and have a great evening! Sincerely, Cindy
I have added it to my blog roll...good luck with it!
ReplyDeleteBest,
Maria
Hi Marie,
ReplyDeleteIt is great to see your blog. I didn't understand whether you've had new surgery or not.
I'm facing the "revisionist" surgery myself. In my case it started in 2002 when I had a L1-L5 fusion for badly degenerated discs & extreme low back pain. When I was supposed to take off the corset and leave the walker behind I soon found that I was leaning to the right.
I went to a new young surgeon that other docs refer to as "Dr. Magic Hands." That's how good he's supposed to be... After over 3 yrs of watching it get worse and having to have a hip replacement from the leaning, I decided to let him do new surgery. He fused T8-sacrum May 2010. Before surgery he said the best outcome would be that I'd never have to worry about posture again. Immediately after the surgery he said he had put in a little "ladder" at the top of the rods "in case" I needed it fused higher. That was the 1st time I'd ever heard him speak about another surgery.
I was in a brace for 5 mos. As soon as the brace came off it was apparent that I couldn't stand up all the way & it's gotten worse over the last months. I'm leaning forward & having constant aching pain in my shoulders. I'm 62 yrs old & the very last thing I want to do is to go thru this all over again. His plan is to fuse more disks up to T3 or 4.
Last week I saw a highly recommended doc (In Palo Alto, about 35 miles from me.)for a 2nd opinion. He said that plan would never work. I guess my whole body would just be leaning forward... I even called my doc to see if he had just not told me about doing osteotomy\ies & he didn't, just more fusing & trying to stabalize the whole thing.
I found a woman named Linda (Bless her!)on the adult scoli forum & she told me about 2 docs in San Francisco (about 70 miles from me) who are specialists in the revision surgery. Now I'm working on getting my surgery report, Xrays, etc. to fax to them.
I'm terrified of the complication rates of even the best surgeons for revision of flatback. Still don't know if I'll actually have the surgery or not. But the way it is now, traveling more than a few miles or walking without a walker or cane is impossible. The doc in P.A. said that even though I may not feel like it, I'm pretty young & don't have any major med. problems. I realize that it could give me a whole new life. But so far every surgery I've had has created all new problems. I even had a hip replacement in 2007 that made my operated on leg 2 inches shorter than the other one. P.A. surgeon says it's probably because my pelvis was already tilted & the doc for that surgery didn't pick it up. In fact,the doc who did my fusion didn't catch it either. It's hard to imagine a doc who does dozens of hip replacements & another dozens of scoliosis & other spinal fusion surgeries wouldn't notice a 2 inch leg discrepancy. I feel whipped by these docs who were supposed to be the best in the business.
Breeze:
ReplyDeleteI am so sorry to hear about your surgical experiences. Sad to say that yours is not the first such story I've heard. If you haven't already, please contact the National Scoliosis Foundation for advice and surgeon referral. The director (Joe O'Brien) has experienced scoliosis revision surgery first-hand and would be a valuable resource for you.
Good luck and take care!
Maria
Maria:
ReplyDeleteI just found your blog. How wonderful to find people who are experiencing the same issues I have been facing. I had my spine fused in 1980, had the Harrington rods removed in 1982. And by the mid 90s I started having back pain. At age 42 I found myself walking with a cane off and on for a year. Finally had 2 rhizotomies and was diagnosed with flatback syndrome and degenerative joint disease in my lumber spine. PT hasn't helped me. I have seen 4 surgeons in the L.A. area and they all think I need to fuse the last few unfused vertebrae in my lumbar spine. I usually tell them - really? How do you convince someone who went through the hell of the original surgery to go through another fusion! I haven't moved forward with the fusion yet as I have two kids ages 13 and 5. It is just so hard to know what to do.
It is good to read all the experiences you have had - and your readers too. Keep posting!
Darcy
Hi, Darcy:
ReplyDeleteThanks for sharing your story. I'm sorry to hear that you're in pain and having to consider additional surgery. Have you contacted the National Scoliosis Foundation? They might be able to help with physician referrals, etc. I totally understand your caution about more surgery. Feel free to email me privately. I'd like to hear about why your rods were removed two years later.
Good luck and take care!
~ Maria