Surg. consult & question about pre-op procedures

[sed78]

Hi everyone,

I went back to my surgeon for a consultation about my surgery which has been 'penciled in' for September 23rd. It will be done by Dr. Hurford of the Carle Spine Institute in IL. I was able to get most of my questions answered - thanks to this message board I was much more prepared during the appointment than I had been before.

One thing that I have a question about: I asked him about what types of pre-op procedures I would need to have done ahead of time. I was thinking along the lines of MRI/EKG/blood donation/etc. from reading what others have had done. But he said that I would not need any of these things! Only a bunch of bending films about 2 weeks out from the surgery.

Now I am wondering if this is par for the course, so to speak - what types of procedures did everyone else have done?

Also, I got more specific info on my curve. It is a thoracolumbar curve that measures ~52* with a thoracic compensatory curve. The surgeon is planning a completely anterior surgery, with the fusion being from T10 - L3. I think that is pretty short fusion compared to what many of you have been through. I guess the idea is by just fusing the lower, structural curve the top one will go away on its own?? How do we know this is what will happen?

Thanks for any info you have!
--Steph

About Me:
Dx with soliosis at the age of 12, 34* thoracolumbar curve
Wore Charleston nighttime brace for 5 years
At age 18 told my curve would not progress
Now age 31 with 50* curvature and intermittent pain
Surgery scheduled for Sept. 2009

[Pooka1]

About Sed78:
Dx with soliosis at the age of 12, 34* thoracolumbar curve
Wore Charleston nighttime brace for 5 years
At age 18 told my curve would not progress
Now age 31 with 50* curvature and intermittent pain
Surgery scheduled for Sept. 2009

Hi. Can I just ask a few questions for my informal resarrch on progression after "stability?"

1. What was the Cobb angle when you were told your curve wouldn't progress? Was it 34*?

2. Did your curve progress during the 5 years in the Charleston or just afterward? If afterward, do you consider the brace just delayed the surgery rather than avoided it?

Assuming you were 34* at 18 (maturity), your curve moved 16* in 13 years which is over a degree a year and would be unusual for a <50* if we are to believe the published figures (which I may not).

These are a case here, a case there but I am doubting the "magic" <50* at maturity as being some ticket to avoid fusion in one's lifetime. I further think a good case can be made that braces delay rather than avoid surgery in at least in some cases.

Good luck.

[Ballet Mom]

Hi. Can I just ask a few questions for my informal resarrch on progression after "stability?"

Quite obviously, this forum is not a representative sample of the scoliosis world. People come here when they are actively seeking information, help and support. This would exclude all the numerous cases that are out living their lives without problems or with manageable problems. As such, any informal research would be absolutely meaningless.

Here is a link to a quite detailed paper by Weinstein on progression of scoliosis after skeletal maturity. It appears that the table on page 448 is probably where a lot of the information that surgeons use regarding potential progression comes from, and probably why they don't usually start looking to surgery until a minimum of forty degrees.

http://www.ejbjs.org/cgi/content/abstract/65/4/447 (Click on the full-text PDF link)

[Ballet Mom]

Someone had posted earlier an article about SEAS exercises from Italy and I found a chart in it that I think sums up quite appropriately the possibility of progression in adulthood.


This way, basing our behaviour on data from literature that indicate the need to be as far as we can from the two recognised thresholds of scoliosis (50 degrees, i.e. the near certainty of progression in adulthood; and 30 degrees, i.e. possible progression) (Tab. 1),108 and considering that risk does not mean the certainty of progression, we determine the choices of treatment case by case.


http://www.isico.it/approach/Cap2uk.htm Scroll down to the bottom to chart entitled "Possible problems in adulthood"

[CHRIS WBS]

[QUOTE=Pooka1;78884 but I am doubting the "magic" <50* at maturity as being some ticket to avoid fusion in one's lifetime. [/QUOTE]

I think that’s a lot of hogwash. My curve was fist measured at 75 degrees at age 56. Assuming a one degree per year progression, that would put me at a 33 degree curve at age 14 when I reached skeletal maturity. I’m more inclined to believe the Weinstein study. I believe curves under 30 degrees at skeletal maturity have the best likelihood for no further progression.

[LindaRacine]

Hi everyone,

I went back to my surgeon for a consultation about my surgery which has been 'penciled in' for September 23rd. It will be done by Dr. Hurford of the Carle Spine Institute in IL. I was able to get most of my questions answered - thanks to this message board I was much more prepared during the appointment than I had been before.

One thing that I have a question about: I asked him about what types of pre-op procedures I would need to have done ahead of time. I was thinking along the lines of MRI/EKG/blood donation/etc. from reading what others have had done. But he said that I would not need any of these things! Only a bunch of bending films about 2 weeks out from the surgery.

Now I am wondering if this is par for the course, so to speak - what types of procedures did everyone else have done?

Also, I got more specific info on my curve. It is a thoracolumbar curve that measures ~52* with a thoracic compensatory curve. The surgeon is planning a completely anterior surgery, with the fusion being from T10 - L3. I think that is pretty short fusion compared to what many of you have been through. I guess the idea is by just fusing the lower, structural curve the top one will go away on its own?? How do we know this is what will happen?

Thanks for any info you have!
--Steph

About Me:
Dx with soliosis at the age of 12, 34* thoracolumbar curve
Wore Charleston nighttime brace for 5 years
At age 18 told my curve would not progress
Now age 31 with 50* curvature and intermittent pain
Surgery scheduled for Sept. 2009
Hi Steph...

There can be huge differences between centers, so there really is no norm. MRIs are now pretty much only ordered if there's a specific reason for them (atypical curves, radicular pain, etc.) I've found that many surgeons are now giving their patients the option of blood donation, and some are actually discouraging them.

When you get close to surgery, I would hope that they ask you to get a physical and blood work done.

Good luck with your surgery.

Regards,
Linda

[sed78]

Hi. Can I just ask a few questions for my informal resarrch on progression after "stability?"

1. What was the Cobb angle when you were told your curve wouldn't progress? Was it 34*?

2. Did your curve progress during the 5 years in the Charleston or just afterward? If afterward, do you consider the brace just delayed the surgery rather than avoided it?

Assuming you were 34* at 18 (maturity), your curve moved 16* in 13 years which is over a degree a year and would be unusual for a <50* if we are to believe the published figures (which I may not).

1. Yes, at age 18 my Cobb angle was measured at 34* and I was pretty much told I was in the clear for future problems or progression.

2. My curves did not really progress much, if at all, in the Charleston Bending Brace, which I wore from ~13 yrs old until ~17 yrs old.

I am now 31 yrs old. In my mid-20's I went in for a check-up after pregnancy, and my Cobb angle was measured at 42*. That was more than it was 6 yrs earlier, but the ortho I saw at the time didn't think too much of it. (could be diffs. in measurement and did not have the actual films from my younger years to compare it with).

In the last year or so, I have felt like it was getting worse. I felt like I was kind of falling over to my left side more and have been having pain on the convex portion of my thoracolumbar curve as well as low in the lumbar area.

I went in for a check in April and the Cobb is now just over 50*. Surgery was recommended b/c I now have "marked history of curve progression" and pain. My new surgeon told me that once the curve gets to around 50, it almost always will keep progressing. Perhaps slowly, perhaps not. No way to know, and since it looks like surgery is going to be in my future I want to go ahead and have it when I am still (relatively) young.

However, I do feel like I wasted all that time wearing a hot, uncomfortable brace in my teen years when I am going to need surgery anyways!

--Steph

[Pooka1]

Steph, thanks so much for replying. See below...


Hi. Can I just ask a few questions for my informal research on progression after "stability?"

1. What was the Cobb angle when you were told your curve wouldn't progress? Was it 34*?

2. Did your curve progress during the 5 years in the Charleston or just afterward? If afterward, do you consider the brace just delayed the surgery rather than avoided it?

Assuming you were 34* at 18 (maturity), your curve moved 16* in 13 years which is over a degree a year and would be unusual for a <50* if we are to believe the published figures (which I may not).

1. Yes, at age 18 my Cobb angle was measured at 34* and I was pretty much told I was in the clear for future problems or progression.

Okay see according to our surgeon, the likelihood of your progressing as you have and especially at the rate you have with a 34* curve at maturity is very low. Now it could be you are a very unusual case or it could be the data upon which they base these predictions is too limited.

My kid has a 36* - 40* T curve and I would not bet even $100 that if she has that curve at maturity that she will never need fusion. I am going to revisit this point with our surgeon and ask him which studies surgeons rely on to make these risk predictions. If we are talking a handful of studies with only a few patients then that would be good to know.


2. My curves did not really progress much, if at all, in the Charleston Bending Brace, which I wore from ~13 yrs old until ~17 yrs old.

I am now 31 yrs old. In my mid-20's I went in for a check-up after pregnancy, and my Cobb angle was measured at 42*. That was more than it was 6 yrs earlier, but the ortho I saw at the time didn't think too much of it. (could be diffs. in measurement and did not have the actual films from my younger years to compare it with).

In the last year or so, I have felt like it was getting worse. I felt like I was kind of falling over to my left side more and have been having pain on the convex portion of my thoracolumbar curve as well as low in the lumbar area.

I went in for a check in April and the Cobb is now just over 50*. Surgery was recommended b/c I now have "marked history of curve progression" and pain. My new surgeon told me that once the curve gets to around 50, it almost always will keep progressing. Perhaps slowly, perhaps not. No way to know, and since it looks like surgery is going to be in my future I want to go ahead and have it when I am still (relatively) young.

However, I do feel like I wasted all that time wearing a hot, uncomfortable brace in my teen years when I am going to need surgery anyways!

--Steph

I can well imagine why you would feel it was a waste of time. In my daughter's case, I think wearing the Charleston was truly a waste of time because her curve moved at least 8* in one six month period. But even if the curve was stable in-brace as in your case, I see the possibility of the brace delaying surgery as or more likely as the brace letting her avoid surgery based on a number of issues but mainly how her identical twin needed fusing. I explained this to her and let her decide... it took her a few months but she finally stopped wearing the brace. She is just a kid.

Again, good luck.

[Pooka1]

I think that’s a lot of hogwash. My curve was fist measured at 75 degrees at age 56. Assuming a one degree per year progression, that would put me at a 33 degree curve at age 14 when I reached skeletal maturity. I’m more inclined to believe the Weinstein study. I believe curves under 30 degrees at skeletal maturity have the best likelihood for no further progression.

I like your analysis.

We have quite a few villagers here who were documented to be, or were likely to be, <50* at maturity who nonetheless needed fusion, some as early as in their 30's.

I am definitely revisiting this issue with our surgeon.

[Pooka1]

Quite obviously, this forum is not a representative sample of the scoliosis world. People come here when they are actively seeking information, help and support. This would exclude all the numerous cases that are out living their lives without problems or with manageable problems. As such, any informal research would be absolutely meaningless.

Here is a link to a quite detailed paper by Weinstein on progression of scoliosis after skeletal maturity. It appears that the table on page 448 is probably where a lot of the information that surgeons use regarding potential progression comes from, and probably why they don't usually start looking to surgery until a minimum of forty degrees.

http://www.ejbjs.org/cgi/content/abstract/65/4/447 (Click on the full-text PDF link)

102 patients in 1983???

[Pooka1]

Someone had posted earlier an article about SEAS exercises from Italy and I found a chart in it that I think sums up quite appropriately the possibility of progression in adulthood.




http://www.isico.it/approach/Cap2uk.htm Scroll down to the bottom to chart entitled "Possible problems in adulthood"

That's a good table. I'd like to see more data so we can unpack "possible" for risk of progression for curves between 30* and 50*.

Does possible really mean they know of at least one case or does possible really mean several cases but not all? That's a wide range.

[Ballet Mom]

102 patients in 1983???

This was a study on untreated patients...it would probably be even harder to find untreated patients nowadays. It is certainly more reliable than picking out patients here on this forum who have progressed.

I have mentioned the small sample sizes before in these scoliosis studies, which is why I can't imagine that they could make any decisions to start eliminating bracing treatment based on them.

[Pooka1]

This was a study on untreated patients...it would probably be even harder to find untreated patients nowadays. It is certainly more reliable than picking out patients here on this forum who have progressed.

I have mentioned the small sample sizes before in these scoliosis studies, which is why I can't imagine that they could make any decisions to start eliminating bracing treatment based on them.

Scoliosis is too variable, especially considering the different types of scoliosis, to conclude anything from 102 patients in my opinion. ETA: Like a broken record, I will say AGAIN my identical twins have very different curves. If that doesn't bring home the variability, nothing will.

And the subset who had 30* - 50* T curves which is my interest and I think yours also, was of course far less than 102.

I seriously doubt they set the magic 50* based on ~30 patients or whatever it is).

[debbei]

We have quite a few villagers here who were documented to be, or were likely to be, <50* at maturity who nonetheless needed fusion, some as early as in their 30's.




Villager here---holding her hand up!

[debbei]

However, I do feel like I wasted all that time wearing a hot, uncomfortable brace in my teen years when I am going to need surgery anyways!


You didn't waste time, you BOUGHT time. The surgeries now are so much better than they were when you were a teenager.

BTW, I had bending Xrays about 5 months prior to my surgery (the first visit I had with my surgeon. The other preop tests were regular bloodwork, physical & EKG.

Good luck,

[Pooka1]

Villager here---holding her hand up!

Yep. You were one I was thinking of when I wrote that. You don't fit the paradigm nor does the OP.

Of course people who do fit the paradigm aren't posting here. Still I want to see the data upon which the surgeons make these predictions of progression risk.

[Pooka1]

You didn't waste time, you BOUGHT time. The surgeries now are so much better than they were when you were a teenager.


That's an excellent point.

But with the state of fusion surgery now, time is running out when we can justify buying time with a brace in my opinion, especially if the surgery is pushed out of adolescence and possibly involves less vertebrae compared to surgery as an adult and possibly involving more vertebrae just for having delayed.

[sed78]

You didn't waste time, you BOUGHT time. The surgeries now are so much better than they were when you were a teenager.


Debbei,

Yes, I think you are correct. I should look at it from this point of view instead of seeing the bracing as just a waste of time - I am going to work on my outlook! I guess part of the issue is just feeling like I could have already been done with this ordeal years ago, but I was not taking into account the surgical improvements that have been made.

--Steph

[debbei]

Debbei,

Yes, I think you are correct. I should look at it from this point of view instead of seeing the bracing as just a waste of time - I am going to work on my outlook! I guess part of the issue is just feeling like I could have already been done with this ordeal years ago, but I was not taking into account the surgical improvements that have been made.

--Steph

Steph,

this outlook is the only way that I can justify all those horrible years I spent in my milwalkee brace. In my era, it would have been the Harrington Rod surgery, and I'm so thankful that my parents decided (against doctor's advice) to try the brace instead of jumping righ to surgery. I recently thanked my mother for making that decision because now, 8 months after surgery, at 47 yrs old (YIKES) I feel fantastic.

Good luck with your surgery, and keep asking questions here. It helped me so much during the months of waiting.

[JenniferG]

Hi everyone,

I went back to my surgeon for a consultation about my surgery which has been 'penciled in' for September 23rd. It will be done by Dr. Hurford of the Carle Spine Institute in IL. I was able to get most of my questions answered - thanks to this message board I was much more prepared during the appointment than I had been before.

One thing that I have a question about: I asked him about what types of pre-op procedures I would need to have done ahead of time. I was thinking along the lines of MRI/EKG/blood donation/etc. from reading what others have had done. But he said that I would not need any of these things! Only a bunch of bending films about 2 weeks out from the surgery.

Now I am wondering if this is par for the course, so to speak - what types of procedures did everyone else have done?

Also, I got more specific info on my curve. It is a thoracolumbar curve that measures ~52* with a thoracic compensatory curve. The surgeon is planning a completely anterior surgery, with the fusion being from T10 - L3. I think that is pretty short fusion compared to what many of you have been through. I guess the idea is by just fusing the lower, structural curve the top one will go away on its own?? How do we know this is what will happen?

Thanks for any info you have!
--Steph

About Me:
Dx with soliosis at the age of 12, 34* thoracolumbar curve
Wore Charleston nighttime brace for 5 years
At age 18 told my curve would not progress
Now age 31 with 50* curvature and intermittent pain
Surgery scheduled for Sept. 2009

Hi Steph,

My surgeon, who I will defend as a good one, didn't order any tests for me. Not even blood tests. My xrays were taken 9 months prior to surgery at my one and only appointment. He also discouraged blood donation. I saw him in June then I saw him in theatre, the following March.

However, he took xrays in theatre, prior, during and after surgery. I did require a blood transfusion, but he uses the blood bank which he assured me are safe.

So surgeons seem to differ quite a lot in their approach to surgery.