Decisions--2nd opinion very different than first

[leahdragonfly]

I went for a 2nd opinion yesterday with a surgeon that I liked and has good credentials---SRS, experience, etc. He gave me a much more conservative surgical recommendation, with some very good points made. Unfortunately today I just learned he is out-of-network (darn insurance co.).

So my question is, how do I approach the first surgeon, whom I trust, and ask him to revisit my more conservative options? Do I just tell him I got a second opinion from DrX and this is what it is, or do I just not mention that at all and ask what my more conservative options are? He had very briefly mentioned that at our last appt, but glossed over them to recommend fusion T10-pelvis. I am starting to have cold feet about that, after talking with DrY yesterday.

Any advice is greatly appreciated!

[hdugger]

I can't keep DrX and DrY straight , but my sense of the Dr we've both seen is that he's pretty approachable. I'd just tell him that another doctor recommended a more conservative approach, so you'd like to revisit his reasons for wanting a longer fusion.

I do wish we had someone in our area that other people had actually gone through surgery with. Both SRS specialists I talked to seemed bright, but I have no idea how good their results are. That makes it much harder to weigh their opinions.

[debbei]

I can't keep DrX and DrY straight , but my sense of the Dr we've both seen is that he's pretty approachable. I'd just tell him that another doctor recommended a more conservative approach, so you'd like to revisit his reasons for wanting a longer fusion.

I do wish we had someone in our area that other people had actually gone through surgery with. Both SRS specialists I talked to seemed bright, but I have no idea how good their results are. That makes it much harder to weigh their opinions.

Have you asked for referrals from some of these doctors' patients to see how their results are?

[debbei]

I went for a 2nd opinion yesterday with a surgeon that I liked and has good credentials---SRS, experience, etc. He gave me a much more conservative surgical recommendation, with some very good points made. Unfortunately today I just learned he is out-of-network (darn insurance co.).

So my question is, how do I approach the first surgeon, whom I trust, and ask him to revisit my more conservative options? Do I just tell him I got a second opinion from DrX and this is what it is, or do I just not mention that at all and ask what my more conservative options are? He had very briefly mentioned that at our last appt, but glossed over them to recommend fusion T10-pelvis. I am starting to have cold feet about that, after talking with DrY yesterday.

Any advice is greatly appreciated!

I would just out and out tell Dr. X what Dr. Y recommended. This is a very important surgery for you, so you should be sure of your choice.

[hdugger]

Have you asked for referrals from some of these doctors' patients to see how their results are?

I'm sure they've both had happy patients, and I did listen to a radio show that had one of their happy patients (plus the doc) on it, but that doesn't give me the same kind of sample that I see with the "popular" docs on this forum, and it doesn't tell what their unhappy patients might be unhappy about.

I didn't realize what a little city I lived in before

[debbei]

I'm sure they've both had happy patients, and I did listen to a radio show that had one of their happy patients (plus the doc) on it, but that doesn't give me the same kind of sample that I see with the "popular" docs on this forum, and it doesn't tell what their unhappy patients might be unhappy about.

I didn't realize what a little city I lived in before

In that case, have you considered going to one of the 'popular' docs in one of the major cities for an opinion? That might be the tie breaker for you.

[leahdragonfly]

I would just out and out tell Dr. X what Dr. Y recommended. This is a very important surgery for you, so you should be sure of your choice.

Thanks, Debbei! I e-mailed a letter to him last night, we'll see what he says. hdugger, I agree he seems approachable.


I called DrY's office and they agreed to try and get added to my insurance network.

One doc is saying the scoli progressed 12 degrees in one year, but he is going off the radiologist's reports from different facilities. The other doc measured himself, and felt there was only a change of several degrees, within the margin of error, lumbar curve ~40. He did not feel my pain was from the curve. First doc says T10-pelvis, fix everything now while we're at it. The conservative doctor says treat the area that is causing the symptoms, which all the docs agreed was L4/5 and L5/S1--he felt I could have anterior fusion at these two levels and get symptom relief, then see what the future brings. I have to say, I don't think I am ready to give up all the mobility with the longer fusion. I had hoped to have one surgery and be done, but DrY pointed out that I will never have a normal spine, and it was impossible to do any surgery now and have that be the last. DrX actually told me the same thing, but if I had T10-pelvis fused now, he said I would be at risk for needing T-4 through T-10 extension in later years--I would dearly love to avoid such a vast amount of fusion unless it is absolutely necessary.

Thanks for listening,

Gayle

[hdugger]

That's interesting about their curve measurement.

I don't know what my son's actual curve is (because his measurements are all over the map), but part of the reason they're all over the map is because Dr.x measured his curve as much larger then the other docs, and Dr Y measured it somewhat smaller. I thought that was just a "within the error range" thing, but I wonder if they both just have a tendency to measure bigger/smaller.

(Oh, I see, radiologist reports for Dr x - that's a little different. He actually measured ours and said the curve was bigger than the previous doctor had measured by almost 8 degrees. When he read an xray from his own facility, he measured the curve 12 degrees larger than the radiologist. Conversely, when Dr. Y measured a different xray, he thought it was smaller then our previous doc had measured.)

[LindaRacine]

Thanks, Debbei! I e-mailed a letter to him last night, we'll see what he says. hdugger, I agree he seems approachable.


I called DrY's office and they agreed to try and get added to my insurance network.

One doc is saying the scoli progressed 12 degrees in one year, but he is going off the radiologist's reports from different facilities. The other doc measured himself, and felt there was only a change of several degrees, within the margin of error, lumbar curve ~40. He did not feel my pain was from the curve. First doc says T10-pelvis, fix everything now while we're at it. The conservative doctor says treat the area that is causing the symptoms, which all the docs agreed was L4/5 and L5/S1--he felt I could have anterior fusion at these two levels and get symptom relief, then see what the future brings. I have to say, I don't think I am ready to give up all the mobility with the longer fusion. I had hoped to have one surgery and be done, but DrY pointed out that I will never have a normal spine, and it was impossible to do any surgery now and have that be the last. DrX actually told me the same thing, but if I had T10-pelvis fused now, he said I would be at risk for needing T-4 through T-10 extension in later years--I would dearly love to avoid such a vast amount of fusion unless it is absolutely necessary.

Thanks for listening,

Gayle

Hi Gayle....

First, I would never be afraid to tell a surgeon that you went for another opinion. I think doctors expect patients to get another opinion.

With that said, I happen to have a lot of trust in a surgeon who is doing something similar. When patients have a fractional curve between L4 and S1, he recommends only fusing the fractional curve. He does, differ, in how it's done, as he fuses both front and back usually.

Generally, we've been taught to think that scoliosis curves must always be fused. But, as the surgeon mentioned to you, it's not the big scoliosis curves causing the pain in your situation (as well as in a lot of others).

The patients that have these smaller surgeries are recovering incredibly fast, and seem to be very happy with the result. Time will tell whether they eventually need more surgery.

Good luck with your decision. I can tell you that if I was the patient and that was my issue, I'd definitely opt for the smaller surgery.

Regards,
Linda

[jrnyc]

hi Gayle
if he said the "pain isn't coming from the curve"...did he say what it is coming from? is it from discs? from what?

i wouldn't be afraid to tell the surgeon that you saw someone else for another opinion...this is a forever surgery and it is your body...surgeons are used to it, i think...

tough decision! wish you luck whichever way you decide to go...

jess

[leahdragonfly]

Linda,

Thanks for your input--I was hoping you would reply! I really appreciate your input, and I'm glad to hear of other doctors taking the more conservative approach with great results. The way he explained it, it makes sense to just address the symptomatic area and try to leave the scoli alone if it doesn't seem to be causing the pain. I have read that anterior alone is sometimes not enough as a stand alone procedure, so I will ask about it. Another doc two years ago recommended TLIF or PLIF at those two levels, which would fuse front and back.

Jess,

I have spondylolisthesis at L5/S1, which was fused posterior 26 years ago. But the disc never calcified all the way across, so there is thought that there is still some painful motion there, as well as a severely diseased disc. There is also degenerative spondylolisthesis at L4/5, with a severely degenerated disc and definite motion through the joint. There is moderate foraminal stenosis due to the spondy, and the pain is thought to originate from this area and from the degenerated discs. My understanding is that fusing these two levels solidly should eliminate the pain source.

At this point I am willing to try the two-level surgery, and reserve the long fusion for the future if it is necessary.

[Back-out]

What's so great about partial thoracic mobility?

All this is very interesting to me (and others weighting fusion lengths) as I'll need to make a similar judgment call in conjunction w/ surgeon very soon.

Thus far, I have two surgeons voting for T4 -S1 (+pelvis fix) and two voting T10-S1 (+pelvis fix) w/ one as yet not voting - gather he wants me to decide based on the pros and cons. That is (assumption) trade-off between more flexibility with probable/possible PJK in the future. (And I/m also wondering if my lumbar kyphosis would be stably fixed without a longer fusion).

Granted that everyone is different, still generalizing, I hear both Leah and Linda advocating for less surgery even knowing more surgery is a strong possibility - Leah as prospective and Linda retrospective (and presumably glad of the decision) . What's more, Leah has been through a fusion and so knows what's involved.

Hmmm. I'm wondering what's so great about preserving a bit of thoracic mobility. I'd been left w/ the impression that people turn over heaven and earth to preserve mobility below L4 even knowing it will require later extension when those last levels go to hell.

And that's especially true of avoiding if possible, going to S1 and pelvis - which scares me, even though I don't have a choice. As with Jess, I can only figger it must be pretty dreadful to lose that last bit of flexibility. Wondering what goes with it - balance, sitting ability, what..?

But this fuss over the upper thoracic puzzles me (especially since my POV immensely DISfavors more surgery).

I wish at least, that someone could give me a bit more of a "what it feels like" notion of this particular judgment call (between ~ T4 and T10), so I'd be in a better position to make the choice.

Wonder if there's some kind of sketches/photos online - even stick figures - to give me a better idea of what one can and can't do with those different (upper) levels fused. Pretty hard to choose without knowing what one stands to lose. OTOH it's relatively easy to imagine what more surgery down the road would mean.

Meanwhile, I supposing a missing factor in the choice for Leah is how much faith she has in the chance of being "stabilized" with this experimental "fractional curve" fixing (which DOES sound promising. Along the lines of not fixing what ain't - yet - broke). Granted, it requires anterior work too for stability - a further complication in my personal choices...

[leahdragonfly]

but nothing is ever clear when it comes to spine problems

Dr X was indeed extremely approachable, and phoned me first thing Monday morning after reading my e-mail and reviewing my records. He said he had a lot of respect for Dr Y, who is so much more conservative in his recommendation. He remeasured my scoliosis films from two years ago and from April: 32 degrees in 2008, progressed to 40 degrees now. Same measurement as Dr Y, although Dr Y didn't feel this was a significant progression(?). So that is the first area of differing opinion.

The second one, possibly more significant, is I have a lateral listhesis (vertebral slip) at L2--L2 is sliding off the side of the curve. It has gotten worse since last year's x-rays, and Dr X says there is severe arthritis there as well. Dr Y never mentioned any of my spinal arthritis at all, actually. Dr X says I could still consider having an isolated repair at L4-S1, but that he didn't know if it would provide me with adequate pain relief..pain may be also coming from the troubled area of L2/L3. He said I would certainly need fusion T10-pelvis within a few years, and it would be "more definitive" to do everything now. I see some logic in this, and I'm concerned about what will happen to L2/3 if it is left alone right now.

OTOH, Dr Y feels that the slip at L2/3 is not very significant and not the main source of symptoms. He agrees that I will need T10-pelvis sometime in the future, possibly in several years.

I am terrified of the prospect of T10-pelvis--huge surgery, loss of flexibility, long recovery, etc. It is not the best time financially for it either, which has to weigh in the decision to some degree. I still like the idea of trying the smaller L4-S1 revision and save the T10-pelvis for another year, but I wonder if I'm being short-sighted about all of this. Dr X is willing to discuss everything again with me, and invited me to come for another appt, which seems like a good idea. He is also going to put me in touch with some former patients who have had a smaller, then larger surgery, to discuss directly with them how that worked out for them.

I don't think another opinion will help me at this point. In the last two years I've had two other opinions, one for the big surgery, one for the small surgery with more surgery later. Everyone basically agrees on the major problems involved (pseudoarthrosis and spondylolisthesis at L4 with severe disc degeneration), there is lack of agreement about the secondary problems. How do I decide?

Thanks to anyone who is still reading!--I am agonizing over this as you can tell. Any words of advice are so greatly appreciated, and welcomed.

Gayle

[leahdragonfly]

recent x-rays

Since a picture is worth a thousand words.

L2 is the one slipped off to the right towards the top of the lumbar curve.

[titaniumed]

Hi Gayle

In your saggital view, your plumb line is pretty far back. It looks as if from T2 hanging down, you are about 4 inches back at your pelvis.

What has the Doc who wants to just fuse the problem area said about this? Will this increase?

How bad is the pain. It looks painful.

Once again, cobbs address only one plane in scoliosis.

Ed