Strange question

[rohrer01]

Wow cool. I would say your science training was apparent in your writing which is why I initially guessed you had this training.



That's a lot. I am assuming your lumbar curve is functional/compensatory, yes? This issue of waiting where functional curves get so large as to be apparently structural is not something I see addressed too much. One parent did mention a surgeon wanted to operate below 50* on a TL curve so as to try to save levels but that is the only testimonial I can recall about this. I have some questions about the utility and even ethics of this threshold in fast moving, never static, curves like my one daughter had. Perhaps if she was fused at 40* or 45* instead of 58* she might have had a shorter fusion. Now it's true we scheduled surgery when she was 48* but 2 months later she was 58* on the table.



Good work finding that info. The last sentence is very cryptic.

Glad you found someone else.

I thought that 10* was a lot, too. My doctor just ignored it. I think he was just focusing on the BIG one. He neglected to address the severe hypokyphosis issue, too. I really should have a lung function test done. I think the smaller curve has turned from compensatory to structural as it is considered a major curve now. The doctor said I now have a double major curve, something I was never told before. I often wonder if they had done surgery on my "big" curve (diagoned at 39*) and corrected the 4 to 6 vertebrae involved, if I would even have this second curve. My second curve is now 38*. I think that if a curve is painful, it should be fixed.

Since the mindset of most doctors is that scoliosis is not painful, then obviously the painful curves must have some additional pathology that makes them hurt. Perhaps they are causing damage to nerves, or surrounding tissues. Nerve damage can be tested for, but tissue damage can not, as far as I know. I get so aggrivated over this subject that sometimes I feel like going back to school to get my MD so I can work on this problem myself! The only problem is that the MCAT's (Medical School Entrance Exam) scare me to death after being out of college for so long. I know some of the Organic Chemistry guys that write some of the questions for this test, and they are brutal! Anyway back to the subject of the curves, if they had fixed the 4 - 6 vertebrae then, maybe I wouldn't be staring 12 - 14 vertebrae in the face now. If I wait longer is it going to be the whole 24 plus the sacrum? I know I'm being sarcastic.

As far as the cryptic sentence goes, I did not know that there was a difference between Duke Raleigh Hospital and Duke University Medical Center. The doctor in question has priviledges at Duke Raleigh.

I hope I can get in to see this new doctor, too. I hope he's really good. I looked him up. He "looks" nice. He studied at Mayo in Rochester, MN. They seem to have a good reputation for everything.

Thank you all for all the kind words! ((((HUGS))))

[Pooka1]

Thanks! Yes, I'm completely over it. As far as making science understandable to the average reader, I can't take credit for that one. I had a very AWESOME professor, who is still my good friend to this day. She felt that it was extremely important to be able to relay scientific information to the general public. In an advanced course I took in Human Genetics, she gave us "controversial" subjects that we had to do scientific research on and then write a short story (I'll say Reader's Digest style) that would touch the hearts and minds of any reader. This was a very difficult assignment (I hated it at the time), but taught us (those in the class) how important it is to be able to communicate effectively. Really, what if something came up in our own families, or we went on to become genetic counselors, doctors, or some other medical professional? I don't think that without her, I would have this "gift" as you put it. There are educators and then there are those that stick with you the rest of your life. She's definitely the latter category! But thanks for the compliment!

Wow cool. I would say your science training was apparent in your writing which is why I initially guessed you had this training.

My lower cobb has progressed 10* in the last two years.

That's a lot. I am assuming your lumbar curve is functional/compensatory, yes? This issue of waiting where functional curves get so large as to be apparently structural is not something I see addressed too much. One parent did mention a surgeon wanted to operate below 50* on a TL curve so as to try to save levels but that is the only testimonial I can recall about this. I have some questions about the utility and even ethics of this threshold in fast moving, never static, curves like my one daughter had. Perhaps if she was fused at 40* or 45* instead of 58* she might have had a shorter fusion. Now it's true we scheduled surgery when she was 48* but 2 months later she was 58* on the table.

Also, I looked up some things about this doctor (the RUN AWAY doctor) on this forum that were supposed to be really awesome stories. The parent's were very happy. But I saw SO many red flags in that post, that the parent's didn't even realize they were saying. So if a satisfied customer can say negative things without realizing, then I can only imagine the unsatisfied ones! I did the google and OUCH! I don't know why I never found those testimonials before. I honestly did look. I try to be very careful. It can only be expected that you will find good reports and bad reports about ANY doctor, but I felt that even his hospital affiliation was misleading. Scary.

Good work finding that info. The last sentence is very cryptic.

Glad you found someone else.

[rohrer01]

Add me to your fan club, Rohrer!

Sorry about the doc, but I would suspect that you are already over it. Recently I've had a lot of neck pain and thoracic- it takes the starch out of your skirt, as you well know. I've thought of you a lot lately.

I also wanted to add that I always read the science "discussions"...and besides having a wealth of knowledge, you also have the capability of discerning how your posts will sound to the reader with just average science aptitude. (That would be me, and it's okay- I absolutely rock in other areas ). You have a way of making your posts clear and understandable, quite a gift.

Onward into the future!!

Thanks! Yes, I'm completely over it. As far as making science understandable to the average reader, I can't take credit for that one. I had a very AWESOME professor, who is still my good friend to this day. She felt that it was extremely important to be able to relay scientific information to the general public. In an advanced course I took in Human Genetics, she gave us "controversial" subjects that we had to do scientific research on and then write a short story (I'll say Reader's Digest style) that would touch the hearts and minds of any reader. This was a very difficult assignment (I hated it at the time), but taught us (those in the class) how important it is to be able to communicate effectively. Really, what if something came up in our own families, or we went on to become genetic counselors, doctors, or some other medical professional? I don't think that without her, I would have this "gift" as you put it. There are educators and then there are those that stick with you the rest of your life. She's definitely the latter category! But thanks for the compliment!

Ballet Mom had asked about curve progression. I don't have a huge cobb angle, but it is very high and tight (5 or 6 vertebrae span) and 46* with documented progression of 6* in the last two years. My lower cobb has progressed 10* in the last two years. This is after over 20 years of stability. That is why I'm so desperate to find some help. I know it's going to be a tough fix, and I don't want to wait until things are too difficult or dangerous. Even if I do have "other" pain issues such as fibromyalgia, which I probably do, at least I will have addressed this one problem. It causes me difficulty in breathing. The episodes don't usually last that long, but I'm afraid that if I lose my breath for too long and there is no one there to help, well, you can only imagine the rest. It's never lasted that long to lower my Oxygen and I don't want to borrow trouble, but I also need to be realistic about the fact that the episodes are more frequent, I'm progressing, and I'm not getting any younger. We'll see what this new doctor has to say. I'm sure I should be able to get in, since he's on the provider list, YEAH!

Also, I looked up some things about this doctor (the RUN AWAY doctor) on this forum that were supposed to be really awesome stories. The parent's were very happy. But I saw SO many red flags in that post, that the parent's didn't even realize they were saying. So if a satisfied customer can say negative things without realizing, then I can only imagine the unsatisfied ones! I did the google and OUCH! I don't know why I never found those testimonials before. I honestly did look. I try to be very careful. It can only be expected that you will find good reports and bad reports about ANY doctor, but I felt that even his hospital affiliation was misleading. Scary.

[foofer]

Add me to your fan club, Rohrer!

Sorry about the doc, but I would suspect that you are already over it. Recently I've had a lot of neck pain and thoracic- it takes the starch out of your skirt, as you well know. I've thought of you a lot lately.

I also wanted to add that I always read the science "discussions"...and besides having a wealth of knowledge, you also have the capability of discerning how your posts will sound to the reader with just average science aptitude. (That would be me, and it's okay- I absolutely rock in other areas ). You have a way of making your posts clear and understandable, quite a gift.

Onward into the future!!

[debbei]

run away!!!!

Exactly....run FAR FAR away and never look back!

[Ballet Mom]

Thank you, Ballet Mom. I guess the thing that upset me was that he waited three months to tell me. He had enough information about me, including the pain issues, to tell me up front. I feel like three months of my time was wasted that could have been used making arrangements to find another doctor. It's the last minute thing. And, if you read his website, he is certainly NOT shy about his faith. I just felt that a medical question should not have been answered in that manner. But then again, maybe it was the comfort level, I don't know. One of the e-mails was quite blunt about not e-mailing them or calling them with any more questions, which I found to be rude. But, then again, this obviously is not a good patient/physician match. Thanks for your support. Everyone on here has always been so kind and compassionate. That's one good reason why I keep coming back.

I absolutely agree that he should have given you much more notice! And wow, an e-mail like that means you are very lucky that the appt. has been cancelled. Not a good match at all!

I am just absolutely stunned that a surgeon would send an e-mail like that to someone. Unbelievable. I really hope you are more successful in finding a good orthopedist for yourself rohrer. There must be someone out there for you! Sending good vibes to you!

The good news is, this makes it much less likely that the issue has anything to do with whether your pain can be resolved by surgery or not. So there is hope! Looking on the bright side of things!

[rohrer01]

Thank you, Ballet Mom. I guess the thing that upset me was that he waited three months to tell me. He had enough information about me, including the pain issues, to tell me up front. I feel like three months of my time was wasted that could have been used making arrangements to find another doctor. It's the last minute thing. And, if you read his website, he is certainly NOT shy about his faith. I just felt that a medical question should not have been answered in that manner. But then again, maybe it was the comfort level, I don't know. One of the e-mails was quite blunt about not e-mailing them or calling them with any more questions, which I found to be rude. But, then again, this obviously is not a good patient/physician match. Thanks for your support. Everyone on here has always been so kind and compassionate. That's one good reason why I keep coming back.

[Ballet Mom]

I'm going to attempt to give my feedback on all of the comments made. I can speculate about this all day long, but I am thankful I found out when I did. Perhaps the doctor was afraid that I would have complications that would be hard to resolve long distance.

I hardly doubt it was or ever has been an insurance issue, since I've have changing insurance over the years. The policy I have now is EXCELLENT.

As far as my pain being related to my scoliosis? The pain I describe here definitely IS. However, on that note, I was diagnosed in the era of "scoliosis doesn't hurt" and am having a hard time finding a doctor without that mindset. And as far as the degree of curvature I have? I have seen PLENTY of people on this forum alone with similar cobb angles that have had surgery. My particular scoliosis is a very odd and very high LEFT thoracic curve (most are right thoracic) that starts at T1 and now, because of being untreated for years, has developed into a major double thoracic that ends at L2.

And lastly the comment about "prayerful consideration", the office manager did not say that MY case was prayerfully considered, but that after prayerful consideration he has cancelled others in the past. This doctor does not hide his religious views, and that's okay as long as he is skilled in the medical arts. What does bother me is the fact that I want to know particulars. I think that it is a doctor's duty to respect the religious beliefs or lack thereof of a patient, so on the other hand it should be true the other way around. That's why you need to find a suitable doctor/patient match. Not that I'm saying the beliefs have to be the same, but there has to be a mutual understanding. But I find it more than a little unethical for a doctor to use a religious answer (which was no answer - I mean it wasn't even stated what was being prayerfully considered) to a legitimately medical question. So yes, I will RUN my heart out, if that is the kind of feedback I will get. I was upfront and open about EVERYTHING to this doctor and I expected the same in return. I'm just guessing, but I think it was a good thing that I was upfront. Otherwise I may have found myself in a completely irreversable predicament that would have made my life very miserable, indeed!

Hi rorher,

Yes, I was speaking in the abstract about prayerful consideration, not your specific case. But it is most likely that is simply the method he uses for all his cases and so is likely the same way for you, and that's why the nurse felt comfortable telling you that.

I agree that insurance is not the reason. Every orthopedic surgeon we've been to immediately tells you up front whether they will accept the insurance or not or whether you will have to pay on your own. They are quite blunt about that.

The size of the Cobb angle, you'd think the nurse could just tell you that you were under the curve size that insurance companies are paying for these days if that were the case.

So it makes me believe, due to your description of your pain in childhood on the other thread, that perhaps upon reflection, he feels that surgery may not actually end up fixing the debilitating pain issue for you, and that is what you need fixed most? It seems to me it would be unethical for him to operate on you if that's the case (unless your curve is progressing). They may really not know why you have such a pain issue.

Or, it could just as easily be the complications issue that you mention, more easily tended to locally.

I really, truly hope you are able to find the help you need. But it is good that he cancelled the appointment, because he obviously didn't feel there was that doctor/patient match where he would be able to provide help to you in the manner you need.

Good luck in your quest for relief!

[rohrer01]

Thanks! No blush emoicon so this will have to do.

[Pooka1]

He's not an SRS member, but "hey" - pun intended, it's got to be worth a shot.

Excellent.

You make good points. It is my fervent hope you find a surgeon who will help you very soon.

I consider you our main vetter of the molecular stuff that gets posted in this sandbox and we luvs ya.

[rohrer01]

I'm going to attempt to give my feedback on all of the comments made. I can speculate about this all day long, but I am thankful I found out when I did. Perhaps the doctor was afraid that I would have complications that would be hard to resolve long distance.

I hardly doubt it was or ever has been an insurance issue, since I've have changing insurance over the years. The policy I have now is EXCELLENT.

As far as my pain being related to my scoliosis? The pain I describe here definitely IS. However, on that note, I was diagnosed in the era of "scoliosis doesn't hurt" and am having a hard time finding a doctor without that mindset. And as far as the degree of curvature I have? I have seen PLENTY of people on this forum alone with similar cobb angles that have had surgery. My particular scoliosis is a very odd and very high LEFT thoracic curve (most are right thoracic) that starts at T1 and now, because of being untreated for years, has developed into a major double thoracic that ends at L2.

And lastly the comment about "prayerful consideration", the office manager did not say that MY case was prayerfully considered, but that after prayerful consideration he has cancelled others in the past. This doctor does not hide his religious views, and that's okay as long as he is skilled in the medical arts. What does bother me is the fact that I want to know particulars. I think that it is a doctor's duty to respect the religious beliefs or lack thereof of a patient, so on the other hand it should be true the other way around. That's why you need to find a suitable doctor/patient match. Not that I'm saying the beliefs have to be the same, but there has to be a mutual understanding. But I find it more than a little unethical for a doctor to use a religious answer (which was no answer - I mean it wasn't even stated what was being prayerfully considered) to a legitimately medical question. So yes, I will RUN my heart out, if that is the kind of feedback I will get. I was upfront and open about EVERYTHING to this doctor and I expected the same in return. I'm just guessing, but I think it was a good thing that I was upfront. Otherwise I may have found myself in a completely irreversable predicament that would have made my life very miserable, indeed!

Oh, I almost forgot. The googling? I hadn't found anything bad, but now I still don't need to look any further. I'll not be looking back. His office also referred me to an "SRS" doctor that I tried to find legitmate information on, and it appears that this doctor is SOOO illusive, that I can't find ANYTHING on him except the SRS information. Anyone heard of a Dr. James E. Cain? I can't find out anything about him. I did recently find a doctor withing my HMO, that my HMO didn't know that they had, that supposedly handles adult scoliosis. I'm going to try to get in to see him. He is through the Mayo Clinic System. He's not an SRS member, but "hey" - pun intended, it's got to be worth a shot.

[Ballet Mom]

I hardly think prayerful consideration should be any reason to not go to a doctor unless you judge your medical professionals on their religious beliefs. It actually shows you that he contemplated your situation with some respect and tried to determine the appropriate course of action.

It's hardly even worth taking notice of and amazing that anyone would make it sound like there's something wrong with him for doing it. There may be other valid reasons for not going to him, but certainly that is not one.

[Pooka1]

And by the way, you are certainly not a nut case, and I doubt this has much to do with you personally.

I agree. Rohrer01 is no nutcase. Being a nutcase, however, is clearly an open question w.r.t. this surgeon.

[leahdragonfly]

Rohrer,

I know how disappointed you must be, and I am so sorry about that. But I have to think that this was somehow a blessing in disguise--think how much more disappointed you would be if you had made the trip (with all associated expenses) and then be dumped by him.

I also have to wonder if ultimately it has to do with reimbursement issues. This is sadly much more common than people realize. A few years ago I tried to get an appointment with a revision specialist in my area. He was not a preferred provider under my insurance, although they would pay him as an out of network provider, and I would have to pay the rest. When they refused to even make an appointment for a consult, I asked why, and I was told that Dr X had decided he would not see patients with my insurance at all because they just did not pay him enough.

And by the way, you are certainly not a nut case, and I doubt this has much to do with you personally. I agree with the comment above, that I would run away screaming too from someone who cancelled an out of town appointment in such a callous manner.

BYW, if you are still fretting about this, you might gain some interesting info by sending a PM to jrync. I believe she has private info she might share with you about this particular doctor.

Good luck and press on. I have to think you can find someone who can help you.

[hdugger]

rohrer,

Do you know if the reason you're having a hard time getting other doctors to look do surgery because they don't think the pain is related to the scoliosis? Or is it because they can't get insurance authorization unless you're over a certain cobb angle?