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View Full Version : Does scoliosis surgery for Degenerative Adult Onset Scoliosis DECREASE back pain?



susancook
04-20-2012, 08:15 PM
I posted before about my decision about how to decide whether or not to have scoliosis surgery. In my case, I am 65 years old and have "Degenerative Adult Onset Scoliosis" w/ a 25* thoracic levoscoliosis and a 36* lumbar dextroscoliosis "S" curve w/ 4.1 cm. positive coronal and 3.5 cm. positive sagittal balance. Surgery would involve fusion from T3 to S1. I was diagnosed 6 months ago, so this is all new to me. I know that adult onset is much different than adolescent and younger onset as I have significant degenerative disc disease among so many other things. According to my last visit to my surgeon, Dr. Hart at OHSU who I like and trust a lot, for my scoliosis condition, the surgery decision would be based on: loss of function, "a lot" of pain, large curve progression [which he said, I think was 5* in one year], but mostly pain. That's what I have in my notes from my visit of Jan 2012. I see him next week and will ask him about this, that is wheher the surgery decreases back pain, but wanted feedback from the group.

In the previously posted blog, a responder to the blog said that the fusion surgery may not decrease pain or may decrease the pain only some. I would like to hear from people who have Degenerative Adult Onset Scoliosis with major fusions. Was your pain decreased? If so, how much? This is a real bummer, the thought that the surgery would NOT decrease the pain! Thanks for reading this and for your thoughtful response.

Susan

LindaRacine
04-20-2012, 08:43 PM
Hi Susan...

In my case, the surgery gave me 100% relief from my back pain. I would say the vast majority of people get a lot of pain relief. Unfortunately, if you're one of the very unlucky people to get no pain relief (or, worse, have more pain), statistics are meaningless. That's why most surgeons tell their patients that there are no guarantees.

You also need to know that the surgery will almost certainly create new back pain (as well as other pains), that will hopefully be short-term (3-6 months). It's a big surgery, often with a difficult recovery. People who don't have a lot of back pain are usually very unhappy, at least in the early postop period.

Dr. Hart was named as one of the top 28 spine surgeons in America by Orthopedics This Week. I've only heard good things about him. So, I think you're in good hands. If Dr. Hart feels you're a good surgical candidate, and he thinks he has a reasonable chance of getting you out of pain, you should definitely feel good about trusting him.

Best regards,
Linda

susancook
04-20-2012, 09:03 PM
Hi Susan...

In my case, the surgery gave me 100% relief from my back pain. I would say the vast majority of people get a lot of pain relief. Unfortunately, if you're one of the very unlucky people to get no pain relief (or, worse, have more pain), statistics are meaningless. That's why most surgeons tell their patients that there are no guarantees.

You also need to know that the surgery will almost certainly create new back pain (as well as other pains), that will hopefully be short-term (3-6 months). It's a big surgery, often with a difficult recovery. People who don't have a lot of back pain are usually very unhappy, at least in the early postop period.

Dr. Hart was named as one of the top 28 spine surgeons in America by Orthopedics This Week. I've only heard good things about him. So, I think you're in good hands. If Dr. Hart feels you're a good surgical candidate, and he thinks he has a reasonable chance of getting you out of pain, you should definitely feel good about trusting him.

Best regards,
Linda
Thanks. As a Nurse Practitioner, I understand that a surgeon will never say that there is a guarantee, and I don't expect one. I was surprised by the posters comment that the surgery did not provide relief from pain or maybe just slight relief. I will ask Dr. Hart how much relief he think that I would receive from the surgery. I have a lot of confidence in Dr. Hart. He has a relaxed manner, yet exudes confidence. He does not seem rushed and treats me very respectfully. I trust him. I have arthritis of the spine as another condition which probably adds to the pain. Dr. Sibell, a pain specialist MD that works w/ Dr. Hart is planning a diagnostic medial branch block x 2 and if successful, a radiofrequency neurotomy. I am just learning about them on the internet and I see him next week also. I just learned that Gayle is going to see Dr. Hart on Tues also about 2 hours after me, so I will stick around and meet her. Her situation is somewhat different than mine, but she has been supportive on the emails. This blog is great for getting info and not feeling so isolated. Thanks for your support
Susan

golfnut
04-20-2012, 10:29 PM
Susan,
I did not have adult onset scoliosis, so I probably should not even be responding. It seems that you have an excellent surgeon who would not recommend surgery unless he thought you would have pretty good odds for a better quality of life and less pain. Nothing is a guarantee, as you well know. I have no regrets having T4 to sacrum surgery even having had little pain and no limited activities prior to surgery. I not only have hope for a brighter future, but have a much better physical appearance now. I have also returned to golf and tap dancing, which was a big concern when contemplating surgery.

susancook
04-21-2012, 01:26 AM
Susan,
I did not have adult onset scoliosis, so I probably should not even be responding. It seems that you have an excellent surgeon who would not recommend surgery unless he thought you would have pretty good odds for a better quality of life and less pain. Nothing is a guarantee, as you well know. I have no regrets having T4 to sacrum surgery even having had little pain and no limited activities prior to surgery. I not only have hope for a brighter future, but have a much better physical appearance now. I have also returned to golf and tap dancing, which was a big concern when contemplating surgery.

Thanks for the support, which is what I need. The Pain Psychologist said that I rated "average" in my sense of catastrophizing about surgery, but I am impressed with the impact that it must have on one's life, hopefully for the better. It is interesting that scoliosis has such a variety of presentations, you had a huge curve a little pain and I have moderate pain and half your curve. But I will wait this out and see what happens in the future both with the pain and the progression of the pain. Right now I do lots of physical therapy and "Mindfulness". It is great to have this forum to bounce things off of and not feel alone w/ the pain. That helps, especially at night when my pain is the worst and nothing seems to help. Right now, I can't walk for distances, so I am limited there. I am glad that you were able to get back to tap dancing and golf. Thanks again.
Susan

susancook
04-21-2012, 01:58 AM
Thanks. As a Nurse Practitioner, I understand that a surgeon will never say that there is a guarantee, and I don't expect one. I was surprised by the posters comment that the surgery did not provide relief from pain or maybe just slight relief. I will ask Dr. Hart how much relief he think that I would receive from the surgery. I have a lot of confidence in Dr. Hart. He has a relaxed manner, yet exudes confidence. He does not seem rushed and treats me very respectfully. I trust him. I have arthritis of the spine as another condition which probably adds to the pain. Dr. Sibell, a pain specialist MD that works w/ Dr. Hart is planning a diagnostic medial branch block x 2 and if successful, a radiofrequency neurotomy. I am just learning about them on the internet and I see him next week also. I just learned that Gayle is going to see Dr. Hart on Tues also about 2 hours after me, so I will stick around and meet her. Her situation is somewhat different than mine, but she has been supportive on the emails. This blog is great for getting info and not feeling so isolated. Thanks for your support
Susan

Linda: I tried to send you a PM, but couldn't figure out how to do that, so here is the message that I was trying to send to you. I was trying to understand the concept of saggital balance and found an interesting article that I thought that you might like:
http.radiographics.rsna.org/content/30/7/1823.full

Susan

leahdragonfly
04-21-2012, 10:18 AM
Hi Susan,

I will look for you at Dr Hart's.

I am 44 y/o, 5'5", shoulder-length brown wavy hair, and carry a black purse with pink flowers on it.

That's great to hear that Dr Hart was picked for the "Top 28" list. I know he has been very good to me in the 3 years I have been seeing him.

LindaRacine
04-21-2012, 12:17 PM
Linda: I tried to send you a PM, but couldn't figure out how to do that, so here is the message that I was trying to send to you. I was trying to understand the concept of saggital balance and found an interesting article that I thought that you might like:
http.radiographics.rsna.org/content/30/7/1823.full

Susan
Hi Susan...

Thanks. That's a very comprehensive article.

I got your PM, so you got it figured out. Here's a good article, written for patients, on the subject of sagittal imbalance:

http://www.spineuniverse.com/conditions/kyphosis/spinal-curvature-problems-fixed-sagittal-imbalance

Regards,
Linda

loves to skate
04-21-2012, 03:05 PM
Hi Susan,
I am definitely one who is in the category of Degenerative adult onset scoliosis. I was diagnosed in my early 60's after severe sciatic pain in my right leg. It took me a long time to find the right Doctor since my PC physician was clueless to the fact that there was surgery available for adults with scoliosis. Anyway, to make a long story short, although I still have pain post surgery, it is much less that before I had surgery. Some days, I have no pain, but some days when the barometer drops, I am very uncomfortable. Prior to surgery, I couldn't stand for more that five minutes and could barely make it out to my mailbox, a short distance from my house. I can walk about a mile now and can stand for fairly long periods of time. I went back to roller skating 11 months post-op, but since we have moved to a place with no adult roller skating, I have taken up line dancing. Life is good and I would have the surgery again in a heart beat. I wish you all of the luck in the world.
Sally

susancook
04-22-2012, 12:21 AM
Hi Susan...

Thanks. That's a very comprehensive article.

I got your PM, so you got it figured out. Here's a good article, written for patients, on the subject of sagittal imbalance:

http://www.spineuniverse.com/conditions/kyphosis/spinal-curvature-problems-fixed-sagittal-imbalance

Regards,
Linda

Thanks! I downloaded the picture and have it next to my xray. I see Dr. Hart on Tuesday and so far have 22 questions for him! Most of the questions that I want answers to are estimations of how he sees my scoliosis progressing in the future and his estimation of whether he thinks I will need surgery. Then there all the questions about the surgery. I guess that I am afraid that the surgery will not decrease my pain, or that I might have more pain one year after surgery. I have lots of degenerating discs that are no doubt causing pain, and then there's arthritis in the mix. Fortunately, he said that he has had a lot of experience w/older persons, so maybe he can give me his best guess.
Susan

susancook
04-22-2012, 12:45 AM
Hi Susan,
I am definitely one who is in the category of Degenerative adult onset scoliosis. I was diagnosed in my early 60's after severe sciatic pain in my right leg. It took me a long time to find the right Doctor since my PC physician was clueless to the fact that there was surgery available for adults with scoliosis. Anyway, to make a long story short, although I still have pain post surgery, it is much less that before I had surgery. Some days, I have no pain, but some days when the barometer drops, I am very uncomfortable. Prior to surgery, I couldn't stand for more that five minutes and could barely make it out to my mailbox, a short distance from my house. I can walk about a mile now and can stand for fairly long periods of time. I went back to roller skating 11 months post-op, but since we have moved to a place with no adult roller skating, I have taken up line dancing. Life is good and I would have the surgery again in a heart beat. I wish you all of the luck in the world.
Sally

Sally, Love your pictures! What was your scoliosis curve like preop? I had a slow start getting going on therapy/treatment also. I had to ask for an xray of my entire back and then the MD reading the film was a friend of mine, so he read the film immediately and showed them to me and I was sure that they had mixed mine up with some twisted teenager! The local physiatrist referred me to a surgeon who was not a spine surgeon, so I wasted time there. Then, a year in general back exercises which were not especially helpful. Then I self referred myself up to the Spine Center at OHSU in Oregon, and requested "conservative scoliosis treatment". I went into the pain managment MDs office in moderate pain and he immediately referred me to Dr. Hart, the surgeon, who after seing me & ordering more films, asked me to "bring in my husband" for a visit. I have the third visit w/ the surgeon this week, and I won't do anything surgical until after the follow-up xray in the fall, if I even have surgery. I'm not a good personal guage on pain, I guess, so maybe I need to be crying and crawling in pain before I agree to surgery. I'm not sure how to judge how much pain is too much? One way is how much the pain is restricting activities, and mine are only somewhat restricted. Mornings are good, afternoons not so good, and evenings like now are awful. I abuse my TENS unit on IF setting, boy do I use a lot of batteries! Thanks for your information, especially about how active you are now. Wish that you lived closer and we could have some coffee!
Susan

loves to skate
04-22-2012, 03:10 PM
Hi Susan,
I was first referred to a neurosurgeon who I thought was very arrogant and he said he wouldn't operate on me unless I was in a wheelchair. He never referred me to a scoliosis specialist. When I found Dr. Rand through my Godchild who worked for DuPuy at the time, he never measured my curves. He just knew that I need surgery from the looks of my MRI. I had four degenerated discs, stenosis in four places, spondylethesis and arthritis in the facet joints and I don't know what else. Because of my age, with osteopenia, he was not able to get much of a correction other than to give me the proper lordosis in the lumbar area and to give me saggital balance. My surgery lasted 13 hours because he had to carefully cut away bone impinging on my nerve roots. According to his surgical notes, the nerve roots were badly entrapped. You will know when to have surgery when your life is no longer tolerable to you and I would guess that is different for everyone. I like to be active and I was in so much pain, I had to give up rollerskating. I was begging someone to help me and I had tried everything else short of surgery. The problem is with your age, you can't wait forever, although, my Doctor said he operated on a woman who was 76 years young. Our chronological age doesn't necessarily correspond to our real age.
Where in Washington are you located? We get to Seatac every so often because my husband's cousin lives there. His brother also lives in Longview Washington in the summers. If you are anywhere near either of those places, maybe we could get together for coffee one day. You could PM me and I will give you me phone number or my email address.
Sally

susancook
04-23-2012, 12:30 AM
Hi Susan,
I was first referred to a neurosurgeon who I thought was very arrogant and he said he wouldn't operate on me unless I was in a wheelchair. He never referred me to a scoliosis specialist. When I found Dr. Rand through my Godchild who worked for DuPuy at the time, he never measured my curves. He just knew that I need surgery from the looks of my MRI. I had four degenerated discs, stenosis in four places, spondylethesis and arthritis in the facet joints and I don't know what else. Because of my age, with osteopenia, he was not able to get much of a correction other than to give me the proper lordosis in the lumbar area and to give me saggital balance. My surgery lasted 13 hours because he had to carefully cut away bone impinging on my nerve roots. According to his surgical notes, the nerve roots were badly entrapped. You will know when to have surgery when your life is no longer tolerable to you and I would guess that is different for everyone. I like to be active and I was in so much pain, I had to give up rollerskating. I was begging someone to help me and I had tried everything else short of surgery. The problem is with your age, you can't wait forever, although, my Doctor said he operated on a woman who was 76 years young. Our chronological age doesn't necessarily correspond to our real age.
Where in Washington are you located? We get to Seatac every so often because my husband's cousin lives there. His brother also lives in Longview Washington in the summers. If you are anywhere near either of those places, maybe we could get together for coffee one day. You could PM me and I will give you me phone number or my email address.
Sally

Sending you a PM
Susan