Hypokyphosis ???

[rohrer01]

rohrer, like me you have moderate thoratic scoliosis and hypokyphosis, which is a painfull combination. I cant understand why surgeons refuses to do surgery on people like us, when it decreases lung capacity. Maybe the reason is lack of knowledge?

I don't understand either. According to the National Scoliosis Foundation, the one sponsoring this forum, anything over 40* is considered a MAJOR curve. Just a point of interest, since that is commonly used as the "magic" number for surgery. Some surgeons use 50* as their "magic" number and yet others stick by 60* (my current doc uses 60*). This makes no sense, since we are not numbers. They need to take into consideration the "whole" person rather than just a cobb angle. I'll bet you can see an array of severity of disease within a group of people with a cobb of 40*. There are things to consider like rotation, span of vertebrae covered by the curve, curve location, etc. It seems as none of these things are even considered. In fact, at my last two appointments, my doctor never even actually looked at my back. His assistant did the exam with my clothes on! How much can you see there? There was absolutely NO lung function test done either. There was no bending test to measure rotation. It just wasn't a very thorough exam at all.

[Back-out]

I don't understand either. According to the National Scoliosis Foundation, the one sponsoring this forum, anything over 40* is considered a MAJOR curve. Just a point of interest, since that is commonly used as the "magic" number for surgery. Some surgeons use 50* as their "magic" number and yet others stick by 60* (my current doc uses 60*). This makes no sense, since we are not numbers. They need to take into consideration the "whole" person rather than just a cobb angle. I'll bet you can see an array of severity of disease within a group of people with a cobb of 40*. There are things to consider like rotation, span of vertebrae covered by the curve, curve location, etc. It seems as none of these things are even considered. In fact, at my last two appointments, my doctor never even actually looked at my back. His assistant did the exam with my clothes on! How much can you see there? There was absolutely NO lung function test done either. There was no bending test to measure rotation. It just wasn't a very thorough exam at all.

Hmmm. Getting increasingly confused as the JHU doc reported my Cobb as 54 - just to make things good and muddied! Local hospital's been saying 44 deg for seven yrs, while all three docs in NYC said 60 degrees (independently). Note that all these discrepancies may be explainable by their all using different Xrays!

I had no idea that bending Xrays show rotation. No one said a word to me about this (had bending Xrays at JHU). Is this generally accepted as he way to check rotation??

In looking at other factors to decide about surgery, I'm deciding that the most determining thing for me is my congenital flat back condition. This creates sagittal imbalance much like what so many of my age cohorts have gotten only iatrogenically - that is, some thirty or so years after an instrumented fusion. Also, my lumbar kyphosis; it popped up out of no where a few years ago. Both those latter are getting worse and both create pain. They seen to exist independent of the lumbar Cobb, which in the grand scheme of things, may in fact, be relatively stable.

All these considerations are driving me nuts. Can't imagine seeing your doc and having him REFUSE surgery for me, if he too came up with a Cobb under 60 degrees like the one at JHU!?!

Sometimes I feel like flipping a coin.

[jrnyc]

hey rohr
was that doctor you're referring to a surgeon? if so, i'd steer very clear of such a doctor!! i wouldn't expect general practitioners to necessarily know what to look for, but i sure would expect a surgeon to know!

i think in scoliosis, a cut off number is expected, or felt to be needed...part of their criteria...but the surgeons i've seen, and especially the one i would go with for surgery, considered all...including my "particularly hypokyphotic" situation, listhesis, etc...did lung function measurement, took bending Xrays (the "good" kind, laying down)and most especially pointed out how much my very degenerated discs are now causing a lot of my present pain...he also mentioned how much stenosis and arthritis were contributing...so i knew he was looking at all factors involved...every surgeon i've seen liked the idea of botox shots i get in thoracic area, and didnt want to start above T11, even though i questioned the future of needing surgery further up the spine at some point...

all in all, that doctor you saw sounds inadequate to the job needed!!

i also can never forget that surgery is NO guarantee of freedom from pain or lack of problems...thus, i hesitate...

hope you feel better
jess

[rohrer01]

hey rohr
was that doctor you're referring to a surgeon? if so, i'd steer very clear of such a doctor!! i wouldn't expect general practitioners to necessarily know what to look for, but i sure would expect a surgeon to know!

i think in scoliosis, a cut off number is expected, or felt to be needed...part of their criteria...but the surgeons i've seen, and especially the one i would go with for surgery, considered all...including my "particularly hypokyphotic" situation, listhesis, etc...did lung function measurement, took bending Xrays (the "good" kind, laying down)and most especially pointed out how much my very degenerated discs are now causing a lot of my present pain...he also mentioned how much stenosis and arthritis were contributing...so i knew he was looking at all factors involved...every surgeon i've seen liked the idea of botox shots i get in thoracic area, and didnt want to start above T11, even though i questioned the future of needing surgery further up the spine at some point...

all in all, that doctor you saw sounds inadequate to the job needed!!

i also can never forget that surgery is NO guarantee of freedom from pain or lack of problems...thus, i hesitate...

hope you feel better
jess

This is the same SRS surgeon that I've been talking about. Don't want to mention his name again, for fear (the other nasty thread) of being legally libel for discrediting him on a public forum. He practices in Madison, WI. He was always really nice to me before. This last time he wasn't mean, but not too thorough, either.

[rohrer01]

rohrer, if you didn't already know, here is some information I found out about kyfosis browsing an norwegian website today:

In the thoratic sagittal plane (T5-T12) kyphotic curvatures under 10 degrees (<10) is named hypokyfosis, while curvatures from 10 to 40 degrees (10-40) is named normokyfosis, and curvatures over 40 degrees (>40) is named hyperkyfosis.

The latest doctor to evaluate my x-rays said I had "severe" hypokyphosis. He did not give me a degree. I may even have a lordosis there as it sinks in pretty good.

[jrnyc]

a "double c shaped spine??? is that what the X rays found, rohr?? i dont know what that looks like...? have you seen that X ray?


hope you feel better!

jess

[rohrer01]

I've never heard of a double C-shaped spine. I can post my x-rays again. I'm having some trouble as the picture is too large from this computer. Let me see if I can copy if from the other thread. Unfortunately, I did not copy my side standing x-rays to my computer so you can not see the hypokyphosis I'm talking about.

I've been playing around with my computer and let's try this again!

[rohrer01]

These x-rays were taken in March of this year. I can feel my body changing since then, and it doesn't feel for the better, unfortunately.

[jrnyc]

well. rohr...that is kinda what i thought you had...i dont know what anyone means by "double c" curves!!

how does your neck feel...that doesnt look like it would be good...?

jess

[rohrer01]

well. rohr...that is kinda what i thought you had...i dont know what anyone means by "double c" curves!!

how does your neck feel...that doesnt look like it would be good...?

jess

My neck hurts like @#$%^&*!!! No one seems to understand that because by the time I see the specialist, my dear PCP has my pain under control. Practically ALL of the doctors in my PCP's office have seen me where I can not turn my head in any direction. Oh, and getting that last bit out of a pop can? Impossible, even WITH the pain meds. I also have a LOT of rib pain and pain in that lower curve. Any kind of twisting is a no, no. I have to log roll to get out of bed. I have started sleeping in a hospital bed because it inclines and has mild vibration that seems to lull me to sleep like a car ride. Sleeping is separate bed from dear hubby doesn't do much for our married life. It really stinks. All I want is my life back to a reasonable degree. I know I'll never be totally pain free, but reasonably pain free to the point that an occaisional tylenol or ibuprofen will do.

I'm also wondering if my "inappropriate sinus tachycardia" or IST heart arrythmia isn't due to the lack of space in my chest wall. I read somewhere on here the other day, or maybe doing research on the internet, that severe hypokyphosis can cause exercise intolerance, which is the primary symptom of IST. My heart beats so rapidly because I can't catch my breath. I wonder if that's because I don't have room in there to expand my lungs enough to keep up with the oxygen demand during exercise? As I type this, I'm having some gnarly pain in my right rib cage. WOW, "gnarly". Does that date me or what? LOL

[rohrer01]

One more unimportant thing. You know how people tend to hold a pillowcase under their chin when putting in the pillow? I can't do that. I can't hold anything under my chin. I keep trying, but I just can't do it. I used to be able to do that. Being in the medical profession for part of my short working life, I know that this is a big no, no. But I watched my mom do it the whole time I was growing up. I have to do it the nursing way.

[rohrer01]

rohrer, if you didn't already know, here is some information I found out about kyphosis browsing an norwegian website today:

In the thoratic sagittal plane (T5-T12) kyphotic curvatures under 10 degrees (<10) is named hypokyphosis, while curvatures from 10 to 40 degrees (10-40) is named normokyphosis, and curvatures over 40 degrees (>40) is named hyperkyphosis.

The doctor that reviewed this x-ray said I had severe hypokyphosis. If you look at the x-ray, you can clearly see that it is 0* or less.

[LindaRacine]

This is the same SRS surgeon that I've been talking about. Don't want to mention his name again, for fear (the other nasty thread) of being legally libel for discrediting him on a public forum. He practices in Madison, WI. He was always really nice to me before. This last time he wasn't mean, but not too thorough, either.

If you post only truthful statements, there is no need to worry about libel.

[rohrer01]

Looking at my profile x-rays up close, it almost looks like there might be a mild spondolisthesis at about T-10. Does anyone else see that? I have a LOT of pain in that area, as it feels unstable.

[rohrer01]

If you post only truthful statements, there is no need to worry about libel.

I'm not being untruthful, but I don't want to hurt his practice either. He seems to be a very nice man. I just had a bad visit with him. He was NEVER rude or unkind about the way he said things. He was just matter-of-fact, and I obviously did not meet his personal surgical criteria. He offered me no other solutions except to search things out for myself, which is what I'm doing. I really don't understand why others with my degree of pathology seem to have no trouble finding help and I hit road blocks at every turn. It is soooo frustrating!