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  #1  
Old 3rd September 2013, 09:43 PM
KMaxwell KMaxwell is offline
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Default Second surgical opinion = Confusion and discouragement

I just got home from my 2nd opinion consult. It was with the other neurosurgeon in my area considered to be an 'expert' in operating on spinal deformities.

This doctor has given me the opposite advice of the 1st surgeon. The 1st surgeon stated he definitely recommended surgery so up until yesterday I was scared but confident I was making the right decision. Now I am totally confused, discouraged and unsure. I do think it's the right decision to get a 2nd opinion but I'll admit getting two opposing recommendations really sucks.

Here's a comparison between the 2 consults:

1st Neurosurgeon -

Background: Completed his spinal surgery fellowship in 2007. Member of the SRS (Scoliosis Research Society). Started the ‘complex spine team’ at his hospital (which means 1. He always teams up with a 2nd neurosurgeon to do the fusion surgeries, 2. There is a monthly case review with a group of MDs [neurologists, internists, psychiatrists, etc.] from the hospital and as a team they decide yes or no on surgery, 3. They offer education classes to pre-op patients.)

My Consult: There was not much of a physical examination, he mostly studied my x-rays. He stated I have "very classic" Scheuermann’s Kyphosis with an 80 degree Cobb Angle (I believe from T3-L2) and recommended posterior fusion surgery T4 – L2. He said normal kyphosis is 20 - 45 degrees. He said if I don’t have surgery I risk losing bone density when I go through menopause and risk increased curvature and pain while being less fit for surgery due to the bone density loss. He states the pros of surgery outweigh the cons.


2nd Neurosurgeon -

Background: Completed his spinal surgery fellowship in 1991. Not a member of the SRS, though he has spoken at their conferences apparently. Has written two books on the spine, and served on the FDA panel for spinal devices.

My Consult: There was an extensive physical examination (bending, balancing, walking, etc.) and he studied my x-rays along with another physician who’s completing his fellowship. He stated I do NOT have Scheuermann’s Kyphosis but I have Idiopathic Hyperkyphosis with a 66 degree Cobb angle when measured from T5-T12 (which he says is the standard for measuring kyphosis). He said normal kyphosis is 30-60 degrees for my age group. He states I do not need surgery and he does not recommend it. He says if I take care of myself, menopause should not have too much of an impact on my spine. He feels the cons of surgery far outweigh the pros.




Right now at this second if I would say I cannot go through with surgery because the 2nd surgeon has much more experience than the 1st (plus the 1st surgeon is currently writing on research paper on the surgery so it makes me wonder if that somehow biases his recommendation). But I didn't realize how much I wanted the surgery until I was told no. Plus the first surgeon had really convinced me surgery was my best option for the future. So, I'm planning on driving down to Portland to see a 3rd specialist for a third opinion. I will have to pay for this one out of pocket (my insurance won't cover it) but I need a 'tie breaker' to be able to make the best informed decision.


Shouldn't I be relieved that the 2nd surgeon doesn't recommend surgery? I am terrified of the surgery. Does the fact that I'm so disappointed now mean that I wanted the surgery for the wrong reasons? I am super confused about this whole thing. Plus, I totally don't understand this variety in Cobb angles. I've been told 86 degrees (which I think is too high because I remember slouching for that one), 77 degrees, 80 degrees and now 66 degrees. What the heck!?!? I know every physician will get a slightly different Cobb angle from the same spine but this much? It seems ridiculous.



Thanks for letting me rant. I don't like to be so negative but I am just very discouraged right now.


Here's hoping I can get into the 3rd consult asap...
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- Kay

I was diagnosed with Scheuermann's Kyphosis at age 16. I had an 80-degree thoracolumbar kyphosis and mild scoliosis. My posterior fusion surgery was performed by Dr. Sethi in Seattle on Earth Day 2014. It reduced my kyphosis to 50 degrees and my scoliosis to about zero.
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  #2  
Old 4th September 2013, 01:53 AM
Uzuki_Gems Uzuki_Gems is offline
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Default Re: Second surgical opinion = Confusion and discouragement

That has to be so frustrating.

Isn't there a second method for measuring scoliosis that can improve the accuracy of the Cobb angle measurement and give a better idea of what's going on and what your options are? Perhaps you should ask the third doctor about this.

Maybe you simply felt good that there was a definitive course of action you could take that would change things dramatically, as opposed to having to continue to suffer with it, possibly for years to come--possibly forever. Maybe, the positive changes that could or would take place if you go the no-surgery route are so ambiguous that they are more difficult to feel good about.

Anyway, that's how I felt in similar situations (medical issues unrelated to scoliosis).
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  #3  
Old 4th September 2013, 07:04 AM
Angeceilien Angeceilien is offline
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Default Re: Second surgical opinion = Confusion and discouragement

Hi,

Some people r more conservative than others, sometimes in being so conservative and safe they r not efficient. Maybe the other guy was wrong but what if he I right.

Did the second guy know he was a 2nd opinion? Sometimes its an ego thing. There was an article somewhere about how opinions differ on SK.

The experts cant agree what is normal and how to treat it.

Hope it goes well

Ange
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  #4  
Old 4th September 2013, 06:18 PM
hduggan hduggan is offline
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Default Re: Second surgical opinion = Confusion and discouragement

Hi Kay,

I don't know who you're seeing in Portland. We've seen Robert Hart, and I know a few people who went through surgery with him. IMO, he's a good balance between wanting to do surgery and being cautious about not doing it too soon.

But the difference in the measured numbers is puzzling - I'm not sure why there would be such a large discrepancy between the different surgeons.
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  #5  
Old 4th September 2013, 11:42 PM
KMaxwell KMaxwell is offline
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Default Re: Second surgical opinion = Confusion and discouragement

Hey Ange - yes I did let him know it was a second opinion. Who knows, maybe it was an ego thing. I just don't know.

HDuggan - Thanks for the recommendation, much appreciated. Dr. Hart is one of the three specialists I found doing some research (others are Dr. Keenan and Dr. Antezana). I actually called the OHSU office yesterday to try and set up a consult but the receptionist told me I would have to see a neurosurgeon instead (what???). I will give it another try tomorrow.

I also found online that John Hopkins will do a second opinion on any diagnosis (for a mere $800 with x-ray reads ). It's pricey but may be my best way to get a unbiased 3rd opinion. Has anyone here used this service?

I also contacted my 1st surgeon and let him know what the 2nd surgeons recommendation is. I felt a bit uncomfortable doing that, but if he's a professional (which I think he is) he will be understanding about the 2nd opinion and hopefully be able to offer me some insight into the disparity between the two diagnoses/recommendations.

Still feeling discouraged and defeated today... hopefully I will get some better news soon.
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- Kay

I was diagnosed with Scheuermann's Kyphosis at age 16. I had an 80-degree thoracolumbar kyphosis and mild scoliosis. My posterior fusion surgery was performed by Dr. Sethi in Seattle on Earth Day 2014. It reduced my kyphosis to 50 degrees and my scoliosis to about zero.
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  #6  
Old 5th September 2013, 12:24 AM
KMaxwell KMaxwell is offline
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Default Re: Second surgical opinion = Confusion and discouragement

This probably won't be useful since everyone's curve types/angles are different but I thought I'd go ahead and post my pre-op xray of my spine. Anyone want to venture a guess on the angle? I've already gotten four different estimates so really there's no wrong answer.

http://s825.photobucket.com/user/kma...81009565292292
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- Kay

I was diagnosed with Scheuermann's Kyphosis at age 16. I had an 80-degree thoracolumbar kyphosis and mild scoliosis. My posterior fusion surgery was performed by Dr. Sethi in Seattle on Earth Day 2014. It reduced my kyphosis to 50 degrees and my scoliosis to about zero.
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  #7  
Old 5th September 2013, 01:20 AM
hduggan hduggan is offline
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Default Re: Second surgical opinion = Confusion and discouragement

Dr. Keenan is also good. We saw him as our second opinion. He also seems pretty conservative in his treatment. The other doctor I don't know.

I'm not sure why you'd have to see a neurosurgeon, although I know there are a few in the group that Dr. Hart is in. Maybe if you ask your first consult to set up the appointment that would help?
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  #8  
Old 5th September 2013, 01:37 PM
lee1975 lee1975 is offline
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Default Re: Second surgical opinion = Confusion and discouragement

Hi, can I give you some very straight advice. I went through a bunch of specialists, surgeons and doctors to find a doctor that would operate. I wanted the operation cause I would of rather been dead than go through my life as a twisted mess.
If you don't get the surgery you go through life hating your body image and lowing your self worth, if you get the surgery you have a chance at this new life without the self consciousness that you once had.
Just find another doctor with experience that will do it, they're are out there.
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  #9  
Old 5th September 2013, 02:22 PM
Angeceilien Angeceilien is offline
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Default Re: Second surgical opinion = Confusion and discouragement

Hi,
Honestly, in my opinion that curve looks surgical. ...also the vertebrae seem to show very clear wedging classical sk more than 3 vertebrae. I mean look what 50 degree xray looks like. .66 really doesn't sound accurate.

Peace of mind I would get 3rd but id still seriously consider even if it is negative.

Ange
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  #10  
Old 6th September 2013, 05:10 AM
KMaxwell KMaxwell is offline
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Default Re: Second surgical opinion = Confusion and discouragement

Quote:
Originally Posted by hduggan View Post
Dr. Keenan is also good. We saw him as our second opinion. He also seems pretty conservative in his treatment. The other doctor I don't know.

I'm not sure why you'd have to see a neurosurgeon, although I know there are a few in the group that Dr. Hart is in. Maybe if you ask your first consult to set up the appointment that would help?
That's a great idea, Hduggan. And thanks for the info on Dr. Keenan.
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- Kay

I was diagnosed with Scheuermann's Kyphosis at age 16. I had an 80-degree thoracolumbar kyphosis and mild scoliosis. My posterior fusion surgery was performed by Dr. Sethi in Seattle on Earth Day 2014. It reduced my kyphosis to 50 degrees and my scoliosis to about zero.
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  #11  
Old 6th September 2013, 05:17 AM
KMaxwell KMaxwell is offline
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Default Re: Second surgical opinion = Confusion and discouragement

Quote:
Originally Posted by lee1975 View Post
Hi, can I give you some very straight advice. I went through a bunch of specialists, surgeons and doctors to find a doctor that would operate. I wanted the operation cause I would of rather been dead than go through my life as a twisted mess.
If you don't get the surgery you go through life hating your body image and lowing your self worth, if you get the surgery you have a chance at this new life without the self consciousness that you once had.
Just find another doctor with experience that will do it, they're are out there.
Thanks, Lee. Sounds like the surgery was a success for you! Do you have any lingering effects like pain, screw protrusion or anything like that? Also, can I ask the type and severity of curvature you had corrected?
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- Kay

I was diagnosed with Scheuermann's Kyphosis at age 16. I had an 80-degree thoracolumbar kyphosis and mild scoliosis. My posterior fusion surgery was performed by Dr. Sethi in Seattle on Earth Day 2014. It reduced my kyphosis to 50 degrees and my scoliosis to about zero.
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  #12  
Old 6th September 2013, 09:14 AM
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GillyG GillyG is offline
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Default Re: Second surgical opinion = Confusion and discouragement

The thing which worries me most about this is that one specialist says you have Scheuermann's and the other says you don't It is a very specific type of kyphosis which is diagnosable form X-rays due to the wedging of the vertebrae. Do you have any copies of your X-rays for us to see?
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  #13  
Old 6th September 2013, 09:55 AM
Angeceilien Angeceilien is offline
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Default Re: Second surgical opinion = Confusion and discouragement

Hi Gilly,

She posted one a few posts up.

In my opinion I can see at least 4wedged vertebrae and the discs in between seem to have smorl nodes...the apex is quite low.....it doesn't look like a normal side xray....


Ur more experienced though

Ange
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  #14  
Old 6th September 2013, 01:23 PM
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Rachie Rachie is offline
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Default Re: Second surgical opinion = Confusion and discouragement

This really sucks! You have a difficult task ahead of you choosing the right path.

The surgeon we initially saw with my daughter said we should watch and wait. Of course at the time we were relieved because we didn't want to see her go through surgery. But I now know that other surgeons would have had her in a cast straight away. She has had a difficult road - possibly due to delayed treatment? We will never know for sure but, as she is 2 years past the end of her treatment and doing fab, it doesn't really matter now.

How do you feel about your body? Are you desperate to get it fixed because you can't bear how you look? If so, a very experienced surgeon has agreed to operate. Make sure you ask him about all the pros and cons for the future and go for it if you think you can accept those. If, however, you are happy with your body and are just concerned about how not having surgery may affect your body in the future, then maybe you don't have the surgery - but make sure you fully investigate the issues concerning you with a specialist.

I don't know if I've helped. I think if you consult 5 specialists you will get 5 different answers! You need to pick the one you trust and go with them.
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Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
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  #15  
Old 6th September 2013, 05:16 PM
KMaxwell KMaxwell is offline
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Default Re: Second surgical opinion = Confusion and discouragement

Quote:
Originally Posted by Rachie View Post
I think if you consult 5 specialists you will get 5 different answers! You need to pick the one you trust and go with them.

I do have issues with how my back looks. It was a HUGE deal for me when I was in my teens/20s but luckily not as much now. Still, as much as I'd like to see my spine straightened by surgery I don't want to have that be my motivator for the operation. To me, I feel like there are too many risks I'd be taking just for the sake of vanity. Don't get me wrong, it would be AWESOME to have surgery to improve how I look and it is in the back of my mind even now. But I'm trying to base my decision on relief of pain (which is constant but not debilitating) and my prognosis for the future...

I agree with you that I will probably end up with different opinions from each doctor and I think it's good advice to go with the one I trust. That's a very good point.

Glad to hear things are working out so well for your daughter.
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- Kay

I was diagnosed with Scheuermann's Kyphosis at age 16. I had an 80-degree thoracolumbar kyphosis and mild scoliosis. My posterior fusion surgery was performed by Dr. Sethi in Seattle on Earth Day 2014. It reduced my kyphosis to 50 degrees and my scoliosis to about zero.
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