Had 2nd Opinion Today

[briarrose]

Today I went for my second opinion. This was by far the longest I've ever waited for a doctor (appointment was at 10, didn't see doctor until 12:30!). He told me that I'm definitely a candidate for surgery and he would be willing to do it. He thinks I should wait a few years to make sure my curve doesn't stabilize and he thinks more advancements in the surgery may happen so it wouldn't be as invasive. He didn't look over all of my past x-rays, which according to them, progression looks very likely. I'm definitely sticking with my original doctor, but I'm a little apprehensive about doing the surgery in May. I most likely will have it done then, but I'm just more confused than I was before. The doctor today said he would fuse T4-L3 and my other doctor said T4-L1. Would you have the surgery done if this was your case? Thanks!

[vndy]

Briarrose,

My fusion is T4-L1, and today (drum roll please!) my physical therapist had me do a crunch! I lifted my torso, kept it flat, but I was able to do it (though those muscles hadn't been used for a long time!!). I tell you this because I think that being fused to L1 will allow me to move more like myself, especially as I heal. Longer fusion means less mobility, and if you can stabilize the curve with a shorter fusion, you're better off. That said, perhaps prompt the original doctor and ask him if he's confident fusing to L1 will be sufficient to stop progression and get the correction.

Good luck.

[nzgirl]

Hi Briarrose,
There are some pro's and con's for waiting and seeing, I had a progressing curve post-surgery, and we waited and watched, and it continued to progress. There is no science to say which curves will keep going and which won't. The thing is, do you really want new technology in your spine? I had my anterior surgery done by someone when it was relatively new, and he hadn't done many, and he didn't go high enough and the curve progressed. It would be awful for you to wait and have your curve move rapidly, which it looks like it has been.
When I was making the decision whether to keep waiting to see if the curve stabilised, or to have the surgery, my surgeon wouldn't give me any indication as to whether he thought it would progress. I decided myself that given the trend was for it to progress, and speed up in it's progression, that it would be a good idea to go for it. Plus, it's easier when the curve is smaller to get better results, rather than wait until it gets into the 60's and 70's where my original curve was.
I definitly agree with vndy that you should ask how confident he is to get a correction with the level that he goes to, and to maintain the correction. That was the issue with me when my post-op curve progressed, as he didn't go far enough up. Good luck! Get it right first time! Saves a lot of hassle later on.
PS. Vndy! Yay for crunches!

[briarrose]

Thank you both for your replies. As of right now I'm just going to have it done this summer. The timing will work out perfectly. If I don't get it done this summer, I'll have to wait until I'm finished grad school which could be 5-6 years away. I don't know if I can handle the pain that much longer. Even 2 more months of this seems long.

vndy- Congratulations on the crunch! Are you pretty much back to normal now since your surgery? I'll definitely be sure to ask my doctor about the curve correction with L1. I haven't had bending x-rays yet and I'm guessing that will determine where exactly I'll be fused.

nzgirl- I'm so glad you wrote about the new technology. You're right. I don't want something new that hasn't been tested out well enough. I'm so sorry your curve progressed because of that. That must've been frustrating and scary.

Thank you!

[geo]

Hi there! I'm glad you got a second opinion, though it sounds like it added to the confusion. I'm fused T4-12, and like vndy, am able to do crunches (ABLE being the operative word here ) I've been amazed as I heal that my flexibility is pretty much restored. Of course, I keep my back pretty stiff instinctively, since this is all still new to me, but I don't feel as inhibited in movement as I was afraid I might feel.
I'm with vndy -- if it would make you feel better, it might be a good idea to share the opinion of the second surgeon with your preferred surgeon, and see what he agrees with, and what he doesn't, and why.
Good luck in the decision process, that is one of the hardest parts!

[txmarinemom]

I'd count #2 as a "NON-opinion" ....

He told me that I'm definitely a candidate for surgery and he would be willing to do it. He thinks I should wait a few years to make sure my curve doesn't stabilize and he thinks more advancements in the surgery may happen so it wouldn't be as invasive. He didn't look over all of my past x-rays, which according to them, progression looks very likely. I'm definitely sticking with my original doctor, but I'm a little apprehensive about doing the surgery in May. I most likely will have it done then, but I'm just more confused than I was before. The doctor today said he would fuse T4-L3 and my other doctor said T4-L1. Would you have the surgery done if this was your case? Thanks!

Welllllllllllllll ... MY opinion would be get *another* opinion, and maybe *another-another*.

Just me, but I'd count surgeon #2's advice as worthless for several reasons:

- Progressing ADULT curves rarely (I'd venture NEVER) spontaneously stabilize

- He didn't even review your past x-rays (how fast are you progressing?)

- His talk of new techniques down the road are suspect: Your curve COULD potentially be beyond the scope of less invasive techniques (that may or may not even be available) if you wait. I damn sure wouldn't let him attempt to employ new surgical techniques on ME when he seems to have missed "Scoli Basics 101"

- Older at surgery, worsened curvature = lesser ° correction (generally)

Did the 2nd surgeon take his own x-rays? If so, what does your 1st surgeon say about them? Take ALL your x-rays to any subsequent surgeons and INSIST they review them. Stand at the light board with them if necessary. This is your body, and if expectations of competent care and answers to your questions annoy a surgeon, find another one. Both are you right as a patient.

L1 vs. L3 is a huge difference. Yes, you *absolutely* want to take in every involved vertebra to avoid decompensation, but I'd want at *least* one (maybe two) more surgeons to agree it's necessary before giving them L2 and L3.

Regards,
Pam

[briarrose]

Thanks Pam and geo!

geo- It's good to hear that someone else was able to get their flexibility back. This is extremely important to me as I'm sure it is to everyone. I'll be sure to talk to my doctor about the what the second opinion guy said. Unfortunately, my appointment isn't until April 23 and my surgery will most likely be the week of May 11 so that doesn't leave much time. I could probably move the appointment up.

Pam- You're right about the big difference between L1 and L3. I always forget that the L vertebrae are much larger than the T's so that would cause a big difference in flexibility. I haven't had bending x-rays done yet and I'm guessing that will determine where my doctor wants to fuse. I really should have said something about the doctor viewing my other x-rays. I brought everything with me- all of my past x-rays and MRIs, but he didn't look at any of it except for the one x-ray that had been on file that I had taken at the same place less than 3 years ago. New x-rays were taken and he measured my curve at 46 degrees which was 9 degrees greater than the one taken less than 3 years ago. My curve is progressing at 2-3 degrees, if not more, per year. This guy is considered one of the best in the nation. I thought that maybe he knew it was a second opinion so he didn't go into as much detail with me. I will definitely think about getting another opinion. I feel like time is running out though. I started buying stuff that I'll need after the surgery today and I've started making lists. How many opinions did you have?

[txmarinemom]

geo- It's good to hear that someone else was able to get their flexibility back. This is extremely important to me as I'm sure it is to everyone.

I know this was addressed to geo, but it's anticipated my flexibility will be affected very little - if at all. You just don't do much bending through your thoracic area, and tacking L1 to T12 is negligible.

Pam- I haven't had bending x-rays done yet and I'm guessing that will determine where my doctor wants to fuse.

I'm not sure I understand you. Bending xrays have nothing to do with the difference in fusing to L1 or L3: That's determined by the vertebra involved in the structural thoracic curve, and is determined by a normal A/P x-ray

...he didn't look at any of it except for the one x-ray that had been on file that I had taken at the same place less than 3 years ago. New x-rays were taken and he measured my curve at 46 degrees which was 9 degrees greater than the one taken less than 3 years ago. My curve is progressing at 2-3 degrees, if not more, per year.

His failure to look at all but your last x-ray - and taking into account the 5° margin of error on the Cobb, you could be progressing slightly more than 1° a year or almost 5° a year. It's inaccurate to assume 2-3° *if not more* when it could be 2-3° *OR LESS*. The error of margin does NOT always assume HIGHER.

This guy is considered one of the best in the nation. I thought that maybe he knew it was a second opinion so he didn't go into as much detail with me.

Hon, I don't care if he knows he's your *10th* opinion. That's no excuse for less than optimal care.

I will definitely think about getting another opinion. I feel like time is running out though. I started buying stuff that I'll need after the surgery today and I've started making lists.

You've got your preferred surgeon saying L1, and another you describe as "one of the best in the nation" wanting *L3*. Don't hesitate to get a 3rd opinion because it's ~inconvenient~. Trust me ... all that crap on your list can wait.

Look at it this way (far more important than to-do's) ... are you:

a) prepared for decompensation - and more surgery later - if #2 is right and L1 is too short; or

b) giving up TWO lumbar vertebra unnecessarily if he's wrong?

I find either option extremely distasteful.

How many opinions did you have?

I have followed my scoli all my adult life, and was very familiar with the details of my curve. It hasn't moved, and the same vertebra involved 15 years ago were the same ones involved when I had surgery.

My pain continued to worsen, and I made my appointment with Hanson.

We clicked. He neither pushed surgery nor discouraged it. He pointed me to resources that would help me decide what was right for me.

I spoke with some of his past fusion patients.

By the time I saw him again, I had 100+ more questions, and he sat and answered every one as if he had all the time in the world.

I found his approach reasonable, and his correction estimation sensible (BTW, he was dead on with his estimates).

His faith (and support) I could return to my normal level of activity sealed my decision.

I sought no 2nd opinion, and since the moment I opened my eyes after surgery I've not regretted my choice.

[briarrose]

Pam,

I really appreciate you taking the time to respond to my questions/comments. It's making me think which is good.

The reason I keep mentioning about the bending x-rays is because both doctors said they wouldn't know exactly where to fuse to unless they saw the bending x-rays. I have a trunk shift that started about 2 years ago and it isn't permanent as of this point. From what I've read on here from someone else who had it, it just became permanent one day. I naturally want to stand like my x-ray shows and I find myself standing like this a lot, but I can stand up "straight". Both doctors were considering the lower part of my curve to be compensatory. My structural curve ends at T12 (I think). Both doctors were assuming that fusing some or most of the lower curve would cause it to correct itself.

Look at it this way (far more important than to-do's) ... are you:

a) prepared for decompensation - and more surgery later - if #2 is right and L1 is too short; or

b) giving up TWO lumbar vertebra unnecessarily if he's wrong?

I find either option extremely distasteful.

Both of those options do not sound pleasant. I'm planning on calling my first doctor tomorrow and hopefully setting up an appointment this month to talk about the L1 vs L3.

My pain continued to worsen, and I made my appointment with Hanson.

We clicked. He neither pushed surgery nor discouraged it. He pointed me to resources that would help me decide what was right for me.

I spoke with some of his past fusion patients.

By the time I saw him again, I had 100+ more questions, and he sat and answered every one as if he had all the time in the world.

I found his approach reasonable, and his correction estimation sensible (BTW, he was dead on with his estimates).

His faith (and support) I could return to my normal level of activity sealed my decision.

I sought no 2nd opinion, and since the moment I opened my eyes after surgery I've not regretted my choice.

I've felt similarly about my first doctor. We clicked right away and he has been the only doctor that has taken my pain seriously. He also wasn't pushy about surgery but he did tell me that at the rate my curve was progressing, and that it kept changing, surgery would most likely be a decision I would need to greatly consider in my future. I had about 30 questions when I went in to see him in January and he answered them all thoroughly even though it caused other patients to have to wait longer. After my first appointment with him, I knew he was the doctor I wanted to stick with.

I hope this all makes sense as I'm writing at 2am. Again, thank you for your comments.

Shell

[txmarinemom]

I have a trunk shift that started about 2 years ago and it isn't permanent as of this point. From what I've read on here from someone else who had it, it just became permanent one day. I naturally want to stand like my x-ray shows and I find myself standing like this a lot, but I can stand up "straight". Both doctors were considering the lower part of my curve to be compensatory. My structural curve ends at T12 (I think). Both doctors were assuming that fusing some or most of the lower curve would cause it to correct itself.

Shell, I'm not sure who on here you heard that from, but I've never heard of a compensatory curve that just "became permanent one day".

Most often (and yet another reason I'd get more opinions), fusing the structural curve corrects the compensatories to a great extent - or even completely.

Compensatories exists ONLY to balance the structurals, and (just me), I'd run screaming from any surgeon who wanted to take me down to L3 to correct a compensatory you say ends at T12. Maybe there are some pieces I've missed here, but that sounds truly excessive.

I can certainly see L1: That's identical to mine ... I agreed to L1 "just in case" for a curve that appeared to end at T12.

Glad you're thinking. I know when you decide to do it, you just wanna do it ... but you want to maximize success by doing it the right way for YOU. You'll live with the effects of this for a long time, and I know you want that to be a long, COMFORTABLE time, right? ;-).

Best wishes to you, kiddo!

Regards,
Pam