PDA

View Full Version : Two more collapsed spine cases, one starting at only 33* at maturity



Pooka1
10-23-2011, 04:28 PM
http://drlloydhey.blogspot.com/2011/10/catching-up-young-and-middle-aged.html

First case:
Age 23, Cobb angle = 33*
Age 31, Cobb angle = 53*

That is not that paradigm you often hear.

Second case.
Age 55 - here lumbar collapsed under a previously thoracic only curve requiring extra lumbar levels to be fused.

That is precisely what I avoided for my girls.

rohrer01
10-23-2011, 04:59 PM
My scoli has gotten worse and turned into a double major curve from a single major curve. Makes me wonder if my DDD is due to this since my curves go from T1 to L2. As a youth I had NO lumbar involvement at all. Ahhh, the effects of the aging scoliotic spine, the frustration of not finding anyone to help stop it before it gets worse... I know the surgery is dangerous, however if they started doing it when only a few vertebrae could be fused rather that the whole spine. BUT it is also so unpredictable. Some people never progress, and how do you separate us? Scoliscore perhaps? I think it would still be helpful to give to adults up to middle age. Who could have known that my stable spine up to age 35 or so would start progressing again? No explanation for it except maybe damage done by a chiropractor, but chiropractors never had any effect on my curve as a younger person. I'm just pondering... I don't have a whole lot to draw from except my own personal experiences and what I read about it. But as I see it, this is one of the most frustrating diseases to have because there is no "standard" protocol and you are at the mercy of a limited amount of docs (especially limited by insurance companies) and the one suffering as little to no say in their own treatment.

jrnyc
10-23-2011, 06:37 PM
hey rohr
so many unknowns! i was not diagnosed til age 30/31...but i KNOW i had scoli before that...i quit going to doctors
around age 12....terrible fears...no way they would have caught it before...
i remember a doctor mentioning something to me at age 20...i didn't pay much attention...

even with the diagnosis, i was OK til i herniated discs, MUCH later, about 12 years ago......
now i have listhesis, stenosis, DDD, hypokyphosis, etc etc....just a mess...
didn't see all of this coming...

woulda, shoulda, coulda...
just tryin' to cope with it now....

jess

Pooka1
10-23-2011, 09:05 PM
It is incredibly hard to know what to do in some of the adult cases. And it is probably best to avoid lumbar surgery as long a possible.

But that second case went from a one-stop shop for surgery (because he said he could have ended it 3 levels higher at L1 rather than L4) to a "countdown" as Boachie puts it to a fusion to the pelvis. But it is really sad because pedicle screws were not around when she would have had her T curve stabilized to avoid lumbar involvement. Today, the decision might be somewhat clearer because of what is known about fusions ending above L3 or so.

These collapse cases scare me. I hope pediatric surgeons are advising parents of kids with T curves that lumbar involvement is a possibility down the road even on presently subsurgical curves. They should start collecting data to report rates. At a minimum, they need to tell parents and patients to follow curves, even those near 30*, throughout life.

jrnyc
10-23-2011, 11:52 PM
absolutely...i think all kids with curves should be followed...
it is much more likely that injuries in older patients can cause further damage and aggravate the scoliosis and
whatever weaknesses in the spine scoli contributes to....
but one never knows...an injury to a child or teen could start a process of increased degeneration in the same way, no matter that the spines of the kids are younger...


jess

rohrer01
10-24-2011, 12:04 AM
I think they need to change the standard of care for adults. Some have painful curves, like me, and some don't. It seems, though, that as I have read through the board that many adults have a lot of lumbar issues. It really makes one wonder if it would have happened anyway, but I'm thinking it's doubtful that it would be nearly as bad as it is for some of us "younger" middle aged people. I have been treated as a cookie cutter case even though I have a relatively rare curve type, upper right thoracic, which most of the doctors that I've seen had never seen before. I really don't think they even look at the bigger picture. I'll tell you for sure that I would have rather had 4 or so vertebrae fused at 16 when I had a single 39 degree curve rather than the 14 level fusion that would be required if I had the surgery today, not to mention developing DDD in L5/S1. This was a VERY good topic to bring up. Thanks!

jrnyc
10-24-2011, 12:21 AM
i know several adults who do not have scoliosis who have hurt their spines...
some have herniated discs....a few had arthroscopic surgery just for the discs...
most of their injuries were in lumbar area...
they are doing fine now....
they started out with healthy spines...
i think a key difference for any age adult is what shape their spine is in if/when they injure it....
a healthy spine can just plain handle a whole lot that a scoli spine cannot handle!

jess

leahdragonfly
10-24-2011, 09:32 AM
Hi Sharon,

This is an interesting thread, and I enjoyed reading Dr Hey's blog entries that went along with it.

I am also "one of those" younger middle-aged scoli's with the so-called collapsing spine. I went into a Boston brace for a double major curve, both 32-33 degrees at age 13. I refused to wear the brace once I started high school at 14, but my curves were both around 20 degrees after I had been out of the brace for about 3 months. I never had any more spine x-rays until 3 years ago, when I started having back pain. My curves were 30 Lumbar and about 18 thoracic, with severe lumbar degeneration issues. Two years later, my lumbar was 47 and thoracic 30 degrees!--at which point I had my surgery. These measurements were confirmed by several different doctors measuring the curves.

So no, we are definitely not the norm, but I think there are plenty of us out there that had our scoliosis start collapsing from a moderate curve into a severe and degenerated curve in middle age.

Thanks for an interesting topic.

LindaRacine
10-24-2011, 10:51 AM
It is incredibly hard to know what to do in some of the adult cases. And it is probably best to avoid lumbar surgery as long a possible.

But that second case went from a one-stop shop for surgery (because he said he could have ended it 3 levels higher at L1 rather than L4) to a "countdown" as Boachie puts it to a fusion to the pelvis. But it is really sad because pedicle screws were not around when she would have had her T curve stabilized to avoid lumbar involvement. Today, the decision might be somewhat clearer because of what is known about fusions ending above L3 or so.

These collapse cases scare me. I hope pediatric surgeons are advising parents of kids with T curves that lumbar involvement is a possibility down the road even on presently subsurgical curves. They should start collecting data to report rates. At a minimum, they need to tell parents and patients to follow curves, even those near 30*, throughout life.

I think that the problem is that the pediatric surgeons stop seeing these patients when they hit 18-21. I'm sure most of them "know" that many of these patients go on to have issues later in life, but their focus is on fixing the immediate problem and they don't worry about what is going to happen in 40-50 years.

Pooka1
10-24-2011, 12:02 PM
I think the problem is they might still be sending mature kids away with T curves around 30* with the thought that they are out of the woods for life.

But a bigger problem in my opinion is that they don't warn them of potential lumbar involvement. People with T curves are just thinking about progression of the T curve and don't know to worry about lumbar involvement unless you tell them. And some of these people are still screwed because their lumbar get trashed even under subsurgical T curves. That group is truly hosed. They never stood a chance even with monitoring. This is a VERY strong argument to consider fusion for even subsurgical T curves.

LindaRacine
10-24-2011, 03:52 PM
This is where ScoliScore might be incredibly helpful. If there's a kid who is at or close to skeletal maturity, with say a 30 degree curve, but a high ScoliScore, they would probably make a good candidate for surgery now. And, on the other end, if that same kid has a 40 degree curve, but a low ScoliScore, it would probably be wise to advise them against surgery.

Pooka1
10-24-2011, 06:24 PM
This is where ScoliScore might be incredibly helpful. If there's a kid who is at or close to skeletal maturity, with say a 30 degree curve, but a high ScoliScore, they would probably make a good candidate for surgery now. And, on the other end, if that same kid has a 40 degree curve, but a low ScoliScore, it would probably be wise to advise them against surgery.

That's an excellent suggestion but only if future collapse is under the same genetic control as what Scoliscore is monitoring. It may be controlled by different genes because Scoliscore is only testing for progression in immature spines.

Despite all the cases that Dr. Hey is posting about, it still may be that only a vanishingly small percentage of these T curves eventually collapse either in the T portion or the L portion. The T portion is one thing... the L portion is a whole 'nother game and I think patients need to be told that just because they have a T curve does NOT put them out of the woods for lumbar involvement to include fusion to the pelvis.

Doreen1
10-24-2011, 07:20 PM
In Hey's opening paragraph, he refers to a new patient, "...very nice 31 yo woman from Charleston... she'd like to start a family soon..." Sounds like he might be referring to Patty22 from this group.

Warmly,
Doreen

rohrer01
10-24-2011, 11:12 PM
I think they need to change the standard of care for adults. Some have painful curves, like me, and some don't. It seems, though, that as I have read through the board that many adults have a lot of lumbar issues. It really makes one wonder if it would have happened anyway, but I'm thinking it's doubtful that it would be nearly as bad as it is for some of us "younger" middle aged people. I have been treated as a cookie cutter case even though I have a relatively rare curve type, upper right thoracic, which most of the doctors that I've seen had never seen before. I really don't think they even look at the bigger picture. I'll tell you for sure that I would have rather had 4 or so vertebrae fused at 16 when I had a single 39 degree curve rather than the 14 level fusion that would be required if I had the surgery today, not to mention developing DDD in L5/S1. This was a VERY good topic to bring up. Thanks!

I meant upper LEFT thoracic. It is convex to the left and concave to the right.

rohrer01
10-24-2011, 11:18 PM
Does the Scoliscore predict what the curve will look like after reaching maturity? I always assumed that, once you'd stopped growing, where your curve ended up had less to do with genetics and more to do with gravity.

That is a good question. Perhaps some of those genes that make up the scoliscore have to do with the integrity of the disc material, or perhaps loose joints, or some metabolic problem that causes the individual vertebrae to gradually grow a little off as bone is replaced. All of these things could contribute to adult progression. Remember, you don't live in the same body you had 10 years ago or so. We are constantly replacing dead cells with new ones even as adults.

LindaRacine
10-24-2011, 11:27 PM
That is a really good question. Maybe Dr. Ward will comment on this. I know that they know the long-term outcome on many of us, but I don't know if they're actually using this information. If he doesn't chime in on his own, I'll send him another email.

debbei
10-25-2011, 03:56 PM
I think the problem is they might still be sending mature kids away with T curves around 30* with the thought that they are out of the woods for life.



Yep, that's what I was told back in 1984/1985 when both my curves were around 30. What a shock I had 20+ years later when they were both 66.

AILEA
10-28-2011, 02:15 PM
I think the problem is they might still be sending mature kids away with T curves around 30* with the thought that they are out of the woods for life. .


That’s why I asked for a new consultation with a spine specialist and new x-rays, two years an a half after brace weaning. Doctors don’t agree with that, but I’m afraid her curve increases, so I asked for that revision.

I feel our ortho thinks I’m a neurotic mum, so he agreed to have new x-rays done. I hate the idea of new x-rays, because she has had a lot during her treatment, but I really need to know how her curve is now.

I can’t understand why they left adolescents with curves near 30, without a revision plan. Should we trust that their curves will never increase, and forget that one day there was a curve in the spine???

jrnyc
10-28-2011, 08:04 PM
no, i would not trust that it is over and done and will never change....

i do not know what size curve i had as a child...first mention to me was when i was around 19-20 years old....
i did not pay much attention, as i had a lot going on at the time and other things i was worried about..
next i heard was diagnosis at age 30-31...i do not remember what size the curve was....
i remember complaining to a doctor that it felt like there was "a monkey on my back"...
it was upper back pain that i remember, yet now, many many years later, it is lower back pain that is worse...
and curves of T 42, L 61
herniating discs is what started the downhill slide..until i damaged the discs, i went to the gym for cardio and
weights at least 3 times a week, and my back did not bother me often...

there are just too many unknowns....
some will tell you that a young person with a curve of less than 30 degrees at "maturity" will be safe...
but i don't believe it...
too many things can happen, too many things doctors do not know about...
plus minor injuries can set off a curve progression in the 20's, 30's or 40's...

i would recommend periodic checks of the spine...
why not keep a watch on?

jess

rohrer01
10-29-2011, 01:41 AM
I really think it is more of a money thing in a lot of cases. Take me for instance. I had a painful upper T at 39 degrees at sixteen. My parents had no insurance on me so I was more or less a "charity" case. I went to a "scoliosis clinic" at Phoenix Children's Holpital. I saw a different doctor every visit because they were all new doctors that were training on us! I don't see too many adult charity cases and these surgeries are EXPENSIVE. It's like, "get these kids out of here with a subsurgical curve at 18 years old", then they wash their hands of us. The doc mentioned at the outset of this topic is no different when it comes to adults and the almighty $$$, personal experience.

Now it is the adult patient that has to find a way to pay or get insurance for a pre-existing condition which is nearly impossible through private companies. I really don't think that they care once we are on our own. Many of us have nowhere to turn. I went for years not knowing where to go for help. I had pain spells in my early 20's that were so bad that I couldn't even raise my left arm or hold a glass of water AND had three babies to take care of.

Really, where are the adult scoli clinics? Yeah, there are plenty of SRS docs out there, but you aren't going to get anywhere without the $$$. I have a neice that has pain so bad she can barely get out of bed, but no one to help because she has no insurance. In my case I have insurance, but I have to literally FIGHT with them to get evaluations by a real scoli doc and I'm only allowed to see one - no second opinion allowed. I can only imagine what they will do when it is time for me to have surgery. As it is, my hubby spends over $1000.00 a month to carry insurance for me and to pay for my doc visits and pain meds. He doesn't make very much money as it is, but what is a person supposed to do? So many are out there that don't even have access to help. It really maddens me.

AND why aren't the docs looking at progressive adult spines as seriously as they should? WHY do they want us to put our surgeries off until we get older and our health declines or our curves are so bad that our entire spine has to be fused? Why??? Arghhh... Sorry for the vent. I feel angry about it, though.

As an 18 year old with no insurance, I felt shoved out the door. At that time if I had reached that magical 40* (remember I was 39*) they would have fixed it. Then the criteria moved to 50* once the 40* mark was hit (had state insurance at that time, which pays docs squat for their services). Now I'm being told 60*, even with a painful curve! Who cares anyway, right? It's my problem, or your problem, or whoever elses problem. Where's the compassion?

I'm not saying that all the docs that treat this don't care. But every one that I've seen have so many patients that you are just another meaningless face. There are always going to be cases worse than mine or yours, and these docs are overloaded and take only the cases that are out of this world horrific. Well maybe they wouldn't be that horrific if more attention had been paid when they were kids or they didn't blow them off because they were subsurgical at 18 years old. I see a lot of older folks on here having really bad issues and were subsurgical at 18. Granted, the technology is better, but how much better when these older ones could have been saved a lifetime of misery from the complications that later ensued due to lack of treatment?

I think these "researchers" should do a better job at educating the scoli docs. Even the SRS docs seem to be lagging, and I KNOW they have their conferences and share information. But it seems that they find their own security zone in the way they each do things and don't really keep up with the pace, even though the information is out there. Maybe I expect too much. They are only human as well. I'm done ranting now.

AILEA
10-29-2011, 05:16 AM
We have no problems with insurance. Of course you can pay for private medical care, but we are covered by our free public health service.
Perhaps most doctors think that the probability of a curve increasing to surgical range is so low, that is not worth to have revisions in adulthood.(our public health service is quite saturated)
But if you are going to have scoliosis surgery (or any other), regarding money, you are covered if you are a teen. or a elder.
Even nurses look at me surprised when they see that my daughter is going to have a revision for scoliosis at 20 y.o. ).But if a curve is growing (or not), is not better to realize now, and check it if it’s needed?

When my daughter finished with her brace, the doc told us “Well, you won’t need to came here again, good bye and good luck! We have finished.” I remember myself thinking :“does he really think that I will never ask for a revision, when we have been at borderline of surgery?, and after more than five years of treatment…that’s all???”

rohrer01
10-29-2011, 11:01 AM
Even an idiot knows that there are degenerative changes to the spine as we age. So how about the scoli spine? Of course it's going to progress. I don't think I've seen one older person on here that hasn't had problems from their previous subsurgical curves. I have a friend in his 70's who has a curve in the 20's and is going to have his whole lower spine fused because an earlier lumbar surgery that was less invasive failed. We all know that scoliosis destabilizes the spine. Now, I dare anyone to say that this surgery isn't MUCH easier for a young person to recover from than an older person. Just look at ages, pain meds needed, and recovery times. The younger population does much better. It just doesn't make sense when a person has a progressive curve as an adult to wait until they are in their 70's to do something about it. Granted, this surgery has it's risks and people do sometimes die, even kids, as I have seen one very heartbreaking story on here. I believe that was a complication from anesthesia that brought about liver failure in the girl, if I remember correctly, not that that is any comfort to her parents, which my heart entirely goes out to. That being said, I haven't seen a huge mortality rate. That puts it in the hands of personal decision. The docs that say their job is done for the kids may be doing them a great disservice by dismissing them with no follow-up into adulthood. I'm sure there are many people out there that are not on the forums or speaking up because they don't have the slightest clue what to do. Even though I have scoli, when my daughter developed it, she was referred to an orthopedic doctor that scpecialized in sports medicine. He just blew her off at the ripe old age of 12 and basically told me never to worry about it. I don't even know what her measurements are. Now that she is an adult, 21 years old, she suffers from back pain. She now refuses to go to a spine specialist to even get it checked because of the way she has seen them treat me. It's very sad. Had I known then what I know now, I might have been able to help her, as her mother. But now, because of the ignorance of a doctor and my own ignorance of believing him, she thinks she has nothing to worry about, ever.

Pooka1
10-29-2011, 11:16 AM
Wow this thread is turning out to be great for seeing some excellent points being made. I never anticipating getting this much out of it when I started the thread.

I just wanted to throw out a caution that the ADULT members on this forum are not expected to be an accurate cross-section of all ADULT scoliosis patients. Rather the people here are here for a reason... they fell through the cracks or are facing surgery or are facing a revision.

It could still be that a majority of folks with a curve in the lower 30*s never need surgery. The often-stated rate of 1*-2* per year is for curves over 50* I believe. Smaller curves are claimed to not progress to surgical range in a life time on average as I understand this.

rohrer01
10-29-2011, 11:33 AM
Wow this thread is turning out to be great for seeing some excellent points being made. I never anticipating getting this much out of it when I started the thread.

I just wanted to throw out a caution that the ADULT members on this forum are not expected to be an accurate cross-section of all ADULT scoliosis patients. Rather the people here are here for a reason... they fell through the cracks or are facing surgery or are facing a revision.

It could still be that a majority of folks with a curve in the lower 30*s never need surgery. The often-stated rate of 1*-2* per year is for curves over 50* I believe. Smaller curves are claimed to not progress to surgical range in a life time on average as I understand this.

Yeah, just like for kids, they want them out of the clinics subsurgical, but for the adults they want you dead so they can say, "See, I told you so-and-so would never need surgery!" Then so-and-so isn't around to complain anymore!

My sarcasm preceeds me as I lay here still in bed, in pain, not able to sleep last night at all because of pain and pain meds doing squat!

Pooka1
10-29-2011, 11:41 AM
Yeah, just like for kids, they want them out of the clinics subsurgical, but for the adults they want you dead so they can say, "See, I told you so-and-so would never need surgery!" Then so-and-so isn't around to complain anymore!

My sarcasm preceeds me as I lay here still in bed, in pain, not able to sleep last night at all because of pain and pain meds doing squat!

I'm sorry to hear that rohrer01. You had weaned off meds I thought but I wasn't sure.

You have neck issues that affect your arm, yes?

LindaRacine
10-29-2011, 12:06 PM
This thread is a fine example of how we're all influenced mostly by our own cases, regardless of the literature.

There is zero possibility that we'll ever get to a place where every kid with a 25+ curve has a scoliosis fusion to avoid the possibility of surgery later in life. As we learn more and more about which kids go on to requiring treatment, we'll know what to do. In the meantime, I think it's fine to rant about the medical establishment, insurance companies, and a society that doesn't provide adequate medical care to every citizen, but, unfortunately, it's not going to change anything.

I think the one thing we can learn from this thread is that anyone who is diagnosed with scoliosis as a child should get themselves into a situation where they are covered by an adequate insurance plan and disability benefits, in the event that they'll eventually need treatment. We all need to take personal responsibility to be sure we don't end up without options.

--Linda

rohrer01
10-29-2011, 12:35 PM
You are absolutely right, I would NEVER argue for fusing those at risk for osteoporosis. I would be leary of fusing and osteoporotic spine, which by the way happens in neglected scoli cases. Fusions are made of bone which will still be osteoporotic and the metal rods can only take so much stress IF they even stay put in the weakened bone.

I know that the forums don't account for the general population. I was the "general population" until I started doing my own research. I just know a lot of people that don't even know that they have any options and just "live with it". Some don't want to do anything about it, either. That's their choice. On the other hand, no one really knows what goes on in the general population. Not everyone will seek treatment and therefore no one ever knows how they progress or what happens to them. I'm sure there are multitudes in this category. So, even the statical information that is gathered by the researchers is skewed to represent only those that seek help for this condition.

As far as what is wrong with my docs here? There is only ONE in the whole state and my insurance won't cover me to go out of state for a second opinion. Don't get me wrong, my other docs like my PCP and my physiatrist are very empathetic. They are also very limited to using drugs and injections to alleviate what pain they can.

I don't like having to take drugs every day of my life just to function. The injections help tremendously with muscle pain but do nothing for bone and nerve pain. It seems when one area feels better, pain pops up in another area. Loosen the muscle spasms and then the spine and ribs hurt.... ya da ya da ya da....

I'm not saying that if I have surgery I will be pain free. I don't expect that. I am angry that had I been ONE degree worse at 16 I could have had maybe 4 vertebrae fused and now IF I ever have surgery I'm up to about 14, not including the DDD I already have developed in the L-spine. My neck pain is horrendous at times and I would hope that bringing my upper back into alignment would alleviate some of that, but I may be deluding myself there, too.

I am frustrated because almost every doctor that I've seen (including the one here in my state) has said I WILL need surgery some day, and my course of progression has been right on the money for what they predicted when I was a teen, but it keeps getting pushed up even though I have had a life of pain. I know there are people much worse than me, so I should cound my blessings, but not every case of scoli is painless as many of these guys seem to think. So much emphasis on degrees and not enough on symptoms. Every scoli is unique in their own right and should be treated as such.

I also know that a 4 level fusion is a heck of a lot less risky on a 16 year old than a 14 level fusion on a 40+++ year old. Sorry, but being fused from top to bottom scared the bajeebees out of me. I just wish there were something that could be done before that is the case. But as was said earlier, this is basically a lose lose situation and there is no cure from problems on down the line, no matter what you do. But they really should take the kids with 30+ degree curves more seriously, even at skeletal maturity. I just don't buy the theory that only 50* curves progress in adulthood, because I am living proof that that is not the case, as are many others here on the forum.

I apologize to those who might be offended by my applying this topic to myself, but I am the only experience I have to go on, other than knowing others. But we don't live in their bodies and don't know how they feel. I know how I feel and I hear how my family and friends with scoli feel. So I am just drawing from my own personal experience.

rohrer01
10-29-2011, 12:42 PM
This thread is a fine example of how we're all influenced mostly by our own cases, regardless of the literature.

There is zero possibility that we'll ever get to a place where every kid with a 25+ curve has a scoliosis fusion to avoid the possibility of surgery later in life.

I think the one thing we can learn from this thread is that anyone who is diagnosed with scoliosis as a child should get themselves into a situation where they are covered by an adequate insurance plan and disability benefits, in the event that they'll eventually need treatment. We all need to take personal responsibility to be sure we don't end up without options.

--Linda

A reliable scoliscore would be helpful.
Getting ouselves into a situation with good insurance coverage is easier said than done in many cases. There are a lot of poor people out there.

rohrer01
10-29-2011, 12:49 PM
I'm sorry to hear that rohrer01. You had weaned off meds I thought but I wasn't sure.

You have neck issues that affect your arm, yes?

Yes, I weaned off the meds. I unrealistically hoped that the pain would be gone and I could be "clean". It didn't happen. I'm not on fentanyl anymore, though, thankfully!

My scoli is soooo high that my neck comes out of my shoulder girdle at quite an angle. My scoli doc said he was surprised that I could even hold my head up. It is convex to the left and the left shoulder and arm is mostly affected, although now I am starting to get pain in my right shoulder, but not nearly as bad as the left.

Pooka1
10-29-2011, 12:50 PM
I'm not saying that if I have surgery I will be pain free. I don't expect that. I am angry that had I been ONE degree worse at 16 I could have had maybe 4 vertebrae fused and now IF I ever have surgery I'm up to about 14, not including the DDD I already have developed in the L-spine. My neck pain is horrendous at times and I would hope that bringing my upper back into alignment would alleviate some of that, but I may be deluding myself there, too.

I think some surgeons are recognizing this. Dr. Hey in his blog seems to have a running theme of "a stitch in time saves nine." He has stated this several times in various ways in many blog posts. It seems he is totally on board with trying to save levels and will operate at lower Cobb angles than those dictated by the paradigm.

And at least one pediatric surgeon has fused a sub-surgical TL curve on a child for the expressed purpose of saving lumbar levels. I know if I had a kid with a TL curve that was threatening involvement below L3 I would search high and low for a surgeon to fuse that. The alternative is a countdown to an eventual fusion to the pelvis as far as anyone knows. That's not the end of the world but if it can be avoided I consider it unethical to not fuse if there is any reasonable possibility. And with TL curves, I suspect there is EVER reason to suspect it will eventually involve levels below L3 if left untreated.

So maybe the ethics on this are evolving.

Rohrer01, I am so sorry about your situation. But maybe you avoided even worse problems with the old instrumentation. Who knows. I hope they can help you now in some way eventually.

LindaRacine
10-29-2011, 01:35 PM
Getting ouselves into a situation with good insurance coverage is easier said than done in many cases. There are a lot of poor people out there.
Yes, but even kids raised in poverty can get at least a high school education, which is usually enough (or certainly was up until the last 10 years), to get a job in a company that provides benefits. I know that kids aren't thinking about health insurance when they decide whether or not to pay enough attention in class, and get an education that will lead to a job. One would hope that enough knowledge gets passed along to the parents or the kids eventually, especially if there is a higher risk of having a condition that may require medical intervention. I'm grateful that my path led me to not doing something that would have kept me unemployed or self-employed.

rohrer01
10-29-2011, 02:14 PM
Probably not the right question to ask someone who's having a hard time getting good treatment, but have you ever had an MRI? The combination of unusual curve and unusual pain might point to something else going on (like a syrinx).

My son has a very similar curve (but going the other way and with some kyphosis thrown in for good measure) - up so high that his neck is at an angle. So far he's avoided having any pain, but it is quite a strain on the whole structure.

I've had the whole shabang. CT myelogram at 16 due to an enlarged nerve root opening at C7. They thought possible tumor. Everything turned out fine. I've had multiple MRI's and no mention of anything unusual. Of course, at my age, just the normal degenerative changes and the scoliosis. I'm extremely hypokyphotic to boot, which puts extra strain on my neck. Oh well, enough about me.

Hopefully, they will learn enough in the near future to help the next generation of kids. That's why I jumped at the chance to donate my DNA to Axial Biotech. My parents both donated theirs as well. Neither one has scoliosis.

rohrer01
10-29-2011, 02:22 PM
Yes, but even kids raised in poverty can get at least a high school education, which is usually enough (or certainly was up until the last 10 years), to get a job in a company that provides benefits. I know that kids aren't thinking about health insurance when they decide whether or not to pay enough attention in class, and get an education that will lead to a job. One would hope that enough knowledge gets passed along to the parents or the kids eventually, especially if there is a higher risk of having a condition that may require medical intervention. I'm grateful that my path led me to not doing something that would have kept me unemployed or self-employed.

I'm a stay-at-home wife. If something happens to my hubby, I'm toast, unless I could join some research team somewhere. I would definitely have to move from my small town, although we do have a branch of Accelerated Genetics nearby. They mostly do bovine semen collection and distribution... boring! But it's all about choices. Kids with medical problems really don't think about things like insurance. My kids think I'm nuts when I tell them they need to get jobs that offer insurance. They could really care less about it, until they get sick and stuck with a medical bill.

Pooka1
10-29-2011, 02:44 PM
They mostly do bovine semen collection and distribution... boring!

I am guessing the steers do not find that work boring. :-)

rohrer01
10-29-2011, 02:59 PM
I am guessing the steers do not find that work boring. :-)

They actually use an electrical prod of some sort to get the collection. Poor humiliated bulls. Kind of hard to get a useful specimen from a steer. ;-)

Pooka1
10-29-2011, 03:06 PM
They actually use an electrical prod of some sort to get the collection. Poor humiliated bulls. Kind of hard to get a useful specimen from a steer. ;-)

WHAT?!?!?!

I just assumed it was like with horses.

Has PETA been informed? They should be. PETA folks can be around the bend but they can help in some cases.

rohrer01
10-29-2011, 03:20 PM
WHAT?!?!?!

I just assumed it was like with horses.

Has PETA been informed? They should be. PETA folks can be around the bend but they can help in some cases.

They don't hurt them. I'm not even going to ask what they do with horses....WAY off topic here, but I'm sure there's no useful specimens from geldings, you need the stallion. ;-)