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Silvercat
03-14-2012, 09:00 PM
Hi everyone

My story is probably quite common, unfortunately!

I am 43 and my scoliosis was first picked up during a school screening when I was 12. I had X rays at age 12, 15 and 20 and was told by specialists my curves were not bad enough to warrant bracing or surgery. From memory the thoracic curve was either 22 or 27 degrees when I was 20 (I no longer have the X rays unfortunately) and the angle of the lumbar curve was a bit less. I (and my mother who accompanied me at the appointments) was also told that the my spine would stabilise once I stopped growing and the curve would not progress.

In January this year I thought I ought to have a new X ray just to check everything was OK and found that my thoracic curve was now 45 degrees. I went to see one of the specialists listed on this site who told me that it is usual for scoliosis to progress at about 1 degree per year and that it would continue to progress - BUT he thought I would be fine and didn't need to worry about it, although I could have the fusion surgery if I really wanted to.

It occurred to me later (of course!) that if it is going to progress at about 1 degree per year then I will have a curve of 60 degrees at age 60, 80 at age 80 and so on, and surely that WILL be problematic! So why the advice to do nothing?! Has anyone else been told this?

I would rather do something about it now while I am still young enough to recover from the surgery. Also, my main passion in life is horses and riding - both dressage and western equitation (I have been a serious trainer and competitor all my life) and the scoliosis has always interfered with my ability to get my poor horses to flex and bend in certain ways (how can they do it properly when their rider is twisted and one sided!). If I do nothing, my riding (and joy and pleasure from riding) will only deteriorate and frustration will increase! On the other hand, there is always a risk of falling from a horse and I am worried how my fused back would be able to cope with the inevitable falls. I would obviously always have to wear a back protector, which I am fine with. I've since been told that the fused area would be very strong, but would that make the unfused areas more susceptible? (ie they take up the slack, so to speak?)

At the moment I am having trouble with simple things like turning to the right, which I never used to have. I have always had trouble with lateral work. My pelvis is twisted and my right seatbone is always ahead of my left, and the weight distribution is not centred. Because of the twisted pelvis, one leg seems a bit shorter than the other, and I'm never sure whether to adjust my stirrups so they are different lengths or if having the same length would help with evening out the weight distribution.

I never know if it is related to the scoliosis or is the same problem most riders have. A riding instructor I know once told me she had a pupil with scoli who seemed to have the same problems I have.

Anyway, are there any other horse people here? How did you manage looking after your horses while recovering from the op? Has there been any improvement in your riding post op?

And the other thing - how does it feel to be straighter? Do you notice the difference or does the body adjust so quickly so that you feel pretty much the same?

Cheers - and hi to the Australian members I already chatted to on the Australian forum!

Lisel

rohrer01
03-14-2012, 11:06 PM
Welcome!
I'm not a horse person, so can't give you advice there. My curves are about the same, 46* and 38* as of two years ago. My surgeon won't offer me surgery until 60* according to my last visit, although he said otherwise at different visits.??? I have the same twisting going on and now my lumbar is involved whereas it didn't used to be. I feel like one leg is shorter sometimes, especially when I am fatigued. I actually do have one leg shorter, but it's the longer leg that "feels" shorter. I am also 43 years old and have your same frustration of wondering if I should have it donw now or wait. I just had an unrelated surgery and I'm opting to wait, at least for now.

My pain is controlled with steroid trigger point injections into the muscles. Nothing I can do about my limited range of motion in my neck, as it is mechanical. Other pain I have, unfortunately I have to use narcotics, muscle relaxants, and benzodiazepines to control.

I wish you all the best, and YES there are horse people on here. I don't know about post surgery riding, but I'm sure someone will chime in.

Rohrer01

LindaRacine
03-14-2012, 11:19 PM
Hi Lisel...

Welcome.

I strongly suggest that you talk to a surgeon about your concerns. Much depends on what levels need to be fused. If you need to be fused to the lower lumbar area, you'll probably never be able to ride, at least at a high level. Even if you're not fused to the lower lumbar area, the vertebrae above and below your fusion will be susceptible to degeneration. Riding could speed up that degeneration. By the way, there actually is a possibility that you could avoid surgery the rest of your life.

I work in a spine center, and we have a competitive level rider with scoliosis. She has chosen not to have surgery, in an effort to keep riding.

It makes me really sad to hear stories like yours. They remind me of how much it sucks to have this condition. Sorry to be such a downer. Best of luck with your decision.

Regards,
Linda

rohrer01
03-14-2012, 11:27 PM
Hi Lisel...

By the way, there actually is a possibility that you could avoid surgery the rest of your life.



You know, that's really interesting that you say this. I have NEVER been given this option. EVERY single surgeon has said I WILL need surgery, eventually. How ironic that they all say this, but none will do it. They are just waiting for that magical moment, I guess.

LindaRacine
03-14-2012, 11:43 PM
You know, that's really interesting that you say this. I have NEVER been given this option. EVERY single surgeon has said I WILL need surgery, eventually. How ironic that they all say this, but none will do it. They are just waiting for that magical moment, I guess.

We have quite a few senior citizens who have very large curves, and have managed to avoid surgery. We have one patient who has 2 very severe curves. Fortunately for her, they are truly well balanced. Her spine looks like a very squished S. While her torso is shortened, she really does not look anywhere near as "deformed" as many people with curves of much smaller degrees.

Of course, we also have a lot of senior citizens who are undergoing big surgeries. (We had an 86 yo a few weeks ago, and an 88 yo this week.)

JenniferG
03-14-2012, 11:46 PM
Hi Lisel! This is a great forum, a font of information and experience here to share.

Pooka1
03-15-2012, 06:26 AM
Hi Lisel. Welcome. I am a parent of two kids with scoliosis, not a patient, but I do dressage and have many comments for you...



From memory the thoracic curve was either 22 or 27 degrees when I was 20 (I no longer have the X rays unfortunately) and the angle of the lumbar curve was a bit less. I (and my mother who accompanied me at the appointments) was also told that the my spine would stabilise once I stopped growing and the curve would not progress.

In January this year I thought I ought to have a new X ray just to check everything was OK and found that my thoracic curve was now 45 degrees.

You are part of a growing number of anecdotal cases we have seen on the group who were subsurgical and even <30* at maturity who nevertheless have progressed to surgical territory or nearly so. They are still telling people that <30* at maturity is protective against needing surgery for progressive in an entire lifetime. Depending on how many cases show up, they many need to revise that. It is passing strange that we have seen the cases on this group that we have although they are probably not an accurate cross-section. It may be no degree is protective necessarily.


I went to see one of the specialists listed on this site who told me that it is usual for scoliosis to progress at about 1 degree per year and that it would continue to progress - BUT he thought I would be fine and didn't need to worry about it, although I could have the fusion surgery if I really wanted to.

The 1* per year progression is for curves >50* as far as I know.


It occurred to me later (of course!) that if it is going to progress at about 1 degree per year then I will have a curve of 60 degrees at age 60, 80 at age 80 and so on, and surely that WILL be problematic! So why the advice to do nothing?! Has anyone else been told this?

Good point. :-)


I would rather do something about it now while I am still young enough to recover from the surgery.

Well the other issue is involvement of a formerly compensatory lumbar curve under even a subsurgical T curve. There have been cases posted of collapsing lumbars and now those folks presumably will need long fusions the pelvis when they might have gotten away with only a T fusion which would barely affect their range of motion. That is a kick in the teeth it seems.


Also, my main passion in life is horses and riding - both dressage and western equitation (I have been a serious trainer and competitor all my life) and the scoliosis has always interfered with my ability to get my poor horses to flex and bend in certain ways (how can they do it properly when their rider is twisted and one sided!). If I do nothing, my riding (and joy and pleasure from riding) will only deteriorate and frustration will increase! On the other hand, there is always a risk of falling from a horse and I am worried how my fused back would be able to cope with the inevitable falls. I would obviously always have to wear a back protector, which I am fine with.

Sally Swift developed Centered Riding largely in response to dealing with her own scoliosis as far as I know. I have both her books and they are great. She died only a few years ago. Great woman.

I have two cases of riders with scoliosis that I know of... one woman in my barn with a subsurgical lumbar scoliosis clearly has trouble sitting centered. She is a lower level rider and this is holding her back in my opinion.

The second case is another woman with a subsurgical lumbar curve who is a pro trainer. She made it to FEI and has spoken about the conscious efforts she needs to undertake to get her weight centered given the curve.


I've since been told that the fused area would be very strong, but would that make the unfused areas more susceptible? (ie they take up the slack, so to speak?)

I think you are talking about a T fusion which sounds to me like it would be an advantage in terms of posture for dressage. The lumbar does take a beating even with correct riding as evidenced by folks who have trained GP horses having bad backs. I should mention that I herniated a disc in my lumbar after an intense series of dressage lessons I took in the early 1990s. I was on a fourth level horse so most of the trotting was sitting. And two days ago, I seem to have herniated another disc in my lumbar. I tried to ride yesterday and it was a no go... I could get a right bend but when I moved my body to ask for left bend the pain shoots up to a 9-10. I think I will have to send my horse to my trainers for a month or two and I am bummed beyond belief about it.


At the moment I am having trouble with simple things like turning to the right, which I never used to have. I have always had trouble with lateral work. My pelvis is twisted and my right seatbone is always ahead of my left, and the weight distribution is not centred. Because of the twisted pelvis, one leg seems a bit shorter than the other, and I'm never sure whether to adjust my stirrups so they are different lengths or if having the same length would help with evening out the weight distribution.

I think the Centered Riding concepts can help you work through some of that stuff. But if you physically can't get your hips and shoulders straight or find some way to compensate then I agree it will be hard if not impossible to get the horse straight. If your horses have not developed any uneveness/lameness then I think you are doing a pretty good job of compensating. That's the acid test.


I never know if it is related to the scoliosis or is the same problem most riders have. A riding instructor I know once told me she had a pupil with scoli who seemed to have the same problems I have.

All riders deal with this. The level of proprioception required for riding is waaaaaay beyond what humans needed even to evolve and survive over the last 100,000 years. It is a long road to develop that level and even the top riders in the world use mirrors all the time because even they can't trust their proprioception. You need to work within your scoliosis but I don't know that that is much different from everyone having to work within their completely inadequate proprioception. It's just wet saddle blankets, instructors with good eyes, and mirrors from here on out. I have been lucky to find great instructors who are all seat, all the time, and now I'm pretty straight because of it. I still use the mirrors all the time.


Anyway, are there any other horse people here? How did you manage looking after your horses while recovering from the op? Has there been any improvement in your riding post op?

We may have a few folks in that category but they haven't been on the forum in a while. Maybe they will respond. I will guess that a T fusion will be an advantage. I don't know if an L fusion will prevent sit trot and canter but I can see it.

Good luck.

rohrer01
03-15-2012, 07:10 AM
We have quite a few senior citizens who have very large curves, and have managed to avoid surgery. We have one patient who has 2 very severe curves. Fortunately for her, they are truly well balanced. Her spine looks like a very squished S. While her torso is shortened, she really does not look anywhere near as "deformed" as many people with curves of much smaller degrees.

Of course, we also have a lot of senior citizens who are undergoing big surgeries. (We had an 86 yo a few weeks ago, and an 88 yo this week.)

If one lives to be in their upper 80's, I don't understand the logic in putting them through a huge surgery like this. My grandpa fractured his hip at 92. He had pneumonia at the time and the docs insisted on "fixing" the hip instead of just stabilizing it. He survived the surgery only to die of the pneumonia a couple of days later. I understand that life isn't over because you are advanced in age, but some of these procedures are just too much on the frail bodies that come with age. I don't see the logic in NOT having the surgery when you are younger and in surgical territory, only to wait until your 80's to finally have it. For that matter ANYONE can live their life without this surgery. It's a matter of quality of life and for many of the very severe cases, longevity as well. I really kind of take offense to a surgeon who would put such elderly geriatric patients through this procedure, knowing full well how long recovery is. Sorry if this upsets you, but I think it's purely unethical if they've survived that long with the scoiosis. I just can't justify talking the younger ones out of surgery while operating on the geriatrics. It makes NO sense.

titaniumed
03-15-2012, 09:15 AM
Lisel

I was one who delayed surgery due to a sport....my skiing was important to me.

Skiing was addressed after surgery, and yes I still ski, but it was a sacrifice in terms of the sport. Iím getting older now, and really need to be slowing things down anyway, so Iím ok with it.....I had a good run, many years of pushing the limits.

You have not mentioned any pain? It seems that you are doing quite well other than a few scoli quirks related to your sport....Itís something we have to live with and adjust to I guess.

I had my surgeries due to unbelievable pain....itís the scale tipper in decision making.

Move slow on your decision....there is no rush.

Welcome to the forum
Ed

leahdragonfly
03-15-2012, 10:06 AM
Hi Silvercat (great screen name!),

If that was me and I didn't have pain, I would not consider surgery at this time. But I would go back and have another x-ray in about 5 years and compare to see if there is truly progression. In less than 5 years, it would be too hard to accurately see if true progression is present if indeed you are progressing at 1 degree per year. You will still be plenty young to have a good recovery. And as others pointed out, you may be able to avoid surgery your whole life. It's definitely something to try for!

In the meanwhile, physical activity and even physical therapy seems to have helped a lot of us put surgery off. I ended up having a big surgery 16 months ago, fusion T8-sacrum for spinal stenosis in the middle of a 47 degree lumbar curve that was degenerating. I am an active mom, lap swimmer and have a physically demanding job. My rods broke in January and 4 weeks ago I underwent an 8 hr revision surgery which I am slowly recovering from now, which is quite a bummer. Point is, you really need to seriously weigh the pros and cons of having surgery, which include the possibility of hardware failures or other complications. To me it sounds like you are doing very well now, and the one-year surgical recovery (at least) would keep you from enjoying riding for quite some time.

Silvercat
03-15-2012, 10:37 PM
Hi Sharon and all

thanks for emailing.

<The 1* per year progression is for curves >50* as far as I know.

Hmm, this guy said most scoli cases do progress. Also, it has been about 1 degree per year over the last 20 years for me.

I asked him via email why the option to do nothing as yet, and he said it was because we don't know if it will progress, which seems to contradict what what he said in the consultation.

<<Well the other issue is involvement of a formerly compensatory lumbar curve under even a subsurgical T curve. There have been cases posted of collapsing lumbars and now those folks presumably will need long fusions the pelvis when they might have gotten away with only a T fusion which would barely affect their range of motion. That is a kick in the teeth it seems.

I would need fusion from T4 to T12 or L1. In other words seven or eight motion segments would be fused with the instrumentation.

<Sally Swift developed Centered Riding largely in response to dealing with her own scoliosis as far as I know. I have both her books and they are great. She died only a few years ago. Great woman.

Yes, I have her books (and videos), also Mary Wanless, Heather Moffett, and a few other authors on the same theme. I couldn't have come this far without them.

<<I have two cases of riders with scoliosis that I know of... one woman in my barn with a subsurgical lumbar scoliosis clearly has trouble sitting centered. She is a lower level rider and this is holding her back in my opinion.

<<The second case is another woman with a subsurgical lumbar curve who is a pro trainer. She made it to FEI and has spoken about the conscious efforts she needs to undertake to get her weight centered given the curve.

Do they have thoracic curves as well, or is the lumbar cuve the primary curve? For me the thoracic is the main one.

<<I think you are talking about a T fusion which sounds to me like it would be an advantage in terms of posture for dressage. The lumbar does take a beating even with correct riding as evidenced by folks who have trained GP horses having bad backs. I should mention that I herniated a disc in my lumbar after an intense series of dressage lessons I

I've never had any problem with my lumbar area from riding. I wonder if riders who do get lumbar problems are riding big horses with big movement (which you would expect at the higher levels). I have easy moving horses these days - not as spectacular but certainly easier to ride.

<<I think the Centered Riding concepts can help you work through some of that stuff. But if you physically can't get your hips and shoulders straight or find some way to compensate then I agree it will be hard if not impossible to get the horse straight. If your horses have not developed any uneveness/lameness then I think you are doing a pretty good job of compensating. That's the acid test.

My horses are generally not straight, esp when on a circle when ridden by me (unless I have someone on the ground giving me feedback and I twist myself to compensate), but they move straight on the lunge and when ridden by others. :-( They don't have any physical issues but that might be because I don't ride often enough and they get long breaks. <<All riders deal with this. The level of proprioception required for riding is waaaaaay beyond what humans needed even to evolve and survive over the last 100,000 years. It is a long road to develop that level and even the top riders in the world use mirrors all the time because even they can't trust their proprioception. You need to work within your scoliosis but I don't know that that is much different from everyone having to work within their completely inadequate proprioception. It's just wet saddle blankets, instructors with good eyes, and mirrors from here on out. I have been lucky to find great instructors who are all seat, all the time, and now I'm pretty straight because of it. I still use the mirrors all the time.>>

That's the rub really - I know all riders deal with the proprioception issues, but they are really quite extreme for riders with scoli. :-( I've posted about it over on the Ride With Your Mind list (a yahoogroups list). For me to get a right bend and to make the horse straight on a straight line I have to twist so far around that I look at the horse's tail. Also, my saddles generally develop a twist in the tree and sit so that the pommel points slightly to the right, which I worry will lead to uneven musculature and prevent bending, so I have switched to treeless saddles. The horses seem happy in them and the topline and shoulder muscling seems even (as it was even with the treed saddles). But it can be hard to tell unless there is extreme muscle wastage.

Did you ever meet Sally Swift? How bad was her curve and was she in any pain? I have never seen any pictures of her riding. Do you know what level she got to? (not necessarily in competion but in training, eg beyond the basics?)

Cheers

Lisel

Pooka1
03-16-2012, 05:53 AM
Hmm, this guy said most scoli cases do progress. Also, it has been about 1 degree per year over the last 20 years for me.

I asked him via email why the option to do nothing as yet, and he said it was because we don't know if it will progress, which seems to contradict what what he said in the consultation.

Well, all I have to say is if all curves progress on average about 1* per year no matter what the starting angle at maturity then there is no angle that is protective against surgery over a lifetime as you calculated. That is NOT what pediatric surgeons are telling people and if that is true then the paradigm for bracing needs to be overhauled. Because all patients wear braces in the hope of avoiding surgery for life, if they are told bracing will only delay it, I predict the compliance will plummet even further than it already has.


I would need fusion from T4 to T12 or L1. In other words seven or eight motion segments would be fused with the instrumentation.

The range of motion in that segment is very small compared to the range of motion of the lumbar. My kids are both fused T4-L1 and do not notice any change that affects what they do. I asked one of them to explore the range of motion post-fusion and as far as I can tell, their fusion prevents the sideways collapse that all riders do on the way to learning correct posture and how to bend the horse correctly without any lean. That's why I think a T fusion is an advantage in dressage.


Yes, I have her books (and videos), also Mary Wanless, Heather Moffett, and a few other authors on the same theme. I couldn't have come this far without them.

I love Wanless very much also and Moffett is on a forum I read. I have Wanless's books and love them.


Do they have thoracic curves as well, or is the lumbar curve the primary curve? For me the thoracic is the main one.

I haven't seen their radiographs. :-) My best info is they have primary lumbar curves and most likely they have smaller compensatory T curves.


I've never had any problem with my lumbar area from riding. I wonder if riders who do get lumbar problems are riding big horses with big movement (which you would expect at the higher levels). I have easy moving horses these days - not as spectacular but certainly easier to ride.

Well yes. I am constantly trying to add more and more suspension to the trot. I have ridden "moving sofas" who basically are not getting any suspension. Easy to sit but not capital "D" dressage. That said, there is a range and if you have a correctly moving horse who is easiER to sit, you can get more money for it. People with back problems often buy gaited horses so they can ride.


My horses are generally not straight, esp when on a circle when ridden by me (unless I have someone on the ground giving me feedback and I twist myself to compensate), but they move straight on the lunge and when ridden by others. :-( They don't have any physical issues but that might be because I don't ride often enough and they get long breaks.

Well don't beat yourself up too much. Straightness is pretty high up on the training pyramid and people struggle with themselves and with the horse's asymmetries. You ride the combination at all times. And there are different definitions... I use shoulder fore (positioned inside) with inside feet aligned as my definition of straight but others use spine on the line. The highest degree is aligning the outside legs per some. That's challenging.

Straightness is hard. It is my hypothesis that if folks could get the horse fairly straight then they could start learning to start collecting. Most people never make to learning collection despite their best efforts and I think a main reason is they just can't get the straightness. It's a bottleneck.


That's the rub really - I know all riders deal with the proprioception issues, but they are really quite extreme for riders with scoli. :-( I've posted about it over on the Ride With Your Mind list (a yahoogroups list). For me to get a right bend and to make the horse straight on a straight line I have to twist so far around that I look at the horse's tail. Also, my saddles generally develop a twist in the tree and sit so that the pommel points slightly to the right, which I worry will lead to uneven musculature and prevent bending, so I have switched to treeless saddles. The horses seem happy in them and the topline and shoulder muscling seems even (as it was even with the treed saddles). But it can be hard to tell unless there is extreme muscle wastage.

Does Wanless participate on the RWYM group?

It sounds like you have made progress. Most people have some asymmetry. For me, I am naturally always in a slight spiral left seat. It is not visible but is still very loud for my horse which is reason #1,899,650 why riding is so hard! To ride evenly, I constantly corrected this consciously at first and now unconsciously. It becomes obvious when I have not corrected it because I can't get a right bend. The correction suggests itself in order to get the bend. A few minutes into the ride and I am out of the spiral left but it has taken years to get to that point. I suspect the top riders may have less asymmetries to begin with and also find and fix any they have quickly.


Did you ever meet Sally Swift? How bad was her curve and was she in any pain? I have never seen any pictures of her riding. Do you know what level she got to? (not necessarily in competition but in training, eg beyond the basics?)

No I never met her and I don't know the specifics of her scoliosis or her riding career. I'd like to know.

Sharon