Why surgeon won't operate

[scoli125]

Hi,
There is something I would put out there. Maybe I am out of line, but I would like to know what some of you think. I AM aware that scoliosis surgery is risky, but maybe there are other factors, especially when doctors are refusing surgery for pain or impaired pulmonary function.
I have reading messages on the scoliosis support from women who are in pain and having their doctors telling them that scoliosis is not painful. There is something wrong: Some scoliosis surgeons are using every excuse not to operate on adults. I suspect that they are afraid of being regarded as cosmetic surgeons, because the surgical procedure DOES result in cosmetic as well as medical improvements. Too, too bad! What a shame. Insurers DO distinguish between cosmetic and reconstructive surgery. And scoliosis surgery definitely falls in the category of reconstructive surgery. Maybe they (surgeons) are making enough money from hip and knee replacements, otherwise I can’t figure out how they make money.
Donna

[loves to skate]

loves to skate

Hi Donna,
Are these scoli surgeons specialists in degenerative conditions in the adult patients or do they mainly treat children and young adults? I had a neurosurgeon tell me he wouldn't operate on me unless I was in a wheelchair. Fortunately I finally chose not to believe him and I found a wonderful scoliosis surgeon whose speciality is the adult patient with scoliosis and the aging spine. At age 68, I have had a very good outcome so far.
Sally

[Jimbo]

Hi scoli, don't you have a 125 degree curve?? I cannot understand why this particular surgeon will not operate. I am SURE that if you continue research you will find a good surgeon willing to operate. Email the guys at Baylor scoliosis clinic in Plano, Texas. They offered me surgery and i am 38 lumbar and 25 thoracic, but with alott of pain. Don't give up!

[scoli125]

I partly regret some of what I wrote in that Email, mostly about the mention of money. It was feeling really down at the time. But thinking more about it I realize is not fair to the countless numbers of orthopedic and scoliosis surgeon who really care, and I have met a few who showed real compassion. And scoliosis surgery is risky, and perhaps dangerous for some patients. It is far better that they err of the side of caution and I can appreciate that.
My thoracic curve is 125 degrees and stiff; the compensatory lumber curve is about 78 to 80 degrees and more flexible. However I didn't think I was in the high risk category due not have many co-morbidities, such as diabetes, or heart disease. I was 67 before I realized that adults could be candidates for spinal recontructive surgery. The reasons I was given for not being a surgical candidate was that I would not benefit, due my not being dibiltated enough or in a great deal of pain. But I am reading on this board that some people who DO have a great deal of pain are being refused surgery.
I am of the opinion that most surgeons do not want operate on adults if they feel the only benefit is cosmetic. I also have impaired pulmonary function and my internist told me most scoliosis surgeons consider pain and mobility problems as a more important reason to operate than for pulmonary disfunction. I thought they were equally important. But my heart does go ou to those living in pain and cannot find a surgeon. So I'm learning to live with my deformity; it could be worse. And I am grateful to be a cancer survivor. That's what's most important! Love and support to all,
Donna

[Susie*Bee]

I sure don't want to diminish anyone's hope for surgery, but it's my understanding that even the most skilled scoliosis surgeons need something to work with when doing these difficult surgeries. Sometimes the spine is too damaged-- the bone is too fragile and wouldn't be strong enough for the surgery. Try to imagine threading a screw into rotten wood and then pulling on it. If the act of just putting the screw in didn't actually pulverize the wood, it wouldn't take long for the screw to come loose anyway, since the wood can't really hold it. I may be oversimplifying it with that analogy, but I think sometimes that is how it is with some older, extremely damaged spines. I have a dear friend who has been told by several scoli docs that she is beyond help. One specialist told her that she is so fragile and has such a tangled mess, that if anyone says they will operate, she should "flee"... That's not to say that some of you out there may be beyond help. If you've been refused in the past, be sure to get additional opinions from really excellent, top-notch, scoliosis specialists who work primarily with older people-- in their 50s-60s and up. If they say "no" to surgery, then ask why not. Then you will know their reason(s) for turning you down. And ask if they know of someone who DOES do surgeries like that. You have nothing to lose (except money!) by continuing your search. Best wishes with it all.

[Karen Ocker]

Cosmesis

My opinion only:

I see red when "cosmesis" is mentioned as an indication for refusing scoliosis surgery. Mild curves don't really "show". Significant and progressive ones do whether they hurt or not. A straighter back is healthier for the whole body.

Remember as the spine(encasing the spinal cord and all the spinal nerves branching out between each vertebrae) curves it takes everything in the chest with it: heart, lungs, aorta, stomach, liver, intestines etc. I lost lung tissue with triple curves: 30 cervical, 80 thoracic, 40 lumbar.

Usually a surgeon refuses because he does not feel comfortable taking it on.
There can be many reasons for this including: lack of training and experience and perhaps not being up to date about other surgeons who do have expertise handling such cases. On the other hand if a person has severe medical problems(called comorbidities) that is another issue.

My surgeon's oldest scoliosis case was 80.

[scoli125]

Cosmesis

Karen, I totally agree with you. Thanks for weighing in on this. A straighter body is healthier. But I was speaking of the attitudes of many surgeons. They don't actually come out and say, "I won't operate for cosmetic reasons", but you know they are looking for what they see as a "medical" reason. I don't if they are having problems with insurance companies over this issue, or like you said, don't feel comfortable taking on hard cases.
Whenever I have been treated for other health issues, especially the cancer surgery six years ago, there were always questions on the part of doctors if my "abnormal anatomy" would compromise my treatment. Luckily I've had wonderful doctors who were able to work around it.
I am worried about what will happen some day if I need heart surgery with my chest organs being so misplaced because of the severe curvature. I don't intend to let it go and will explore other options out there.
Take care,
Donna

[CHRIS WBS]

Donna,

I would strongly suggest that you contact either Dr. Lenke or Dr. Bridwell in St. Louis. Both of these doctors treat the most severe cases. Another option you may want to look into (depending on your financial status) is purchasing an opinion from Dr. Robert Pashman. Here’s information on his website. http://espine.com/second-opinion.htm. He’s an outstanding surgeon who may be able to provide you with a solid lead.

If there is anything that I can help you with, please feel free to send me a private message.

Chris

[scoli125]

Thanks Chris and all the best

Thanks so much Chris. I have visited the website of both Dr Lenke and Dr Bridwell. I intend to write, or email them and present my case. But at the same time I would like to visit Dr Schafer at Northwestern Hospital to get his opinion. Also I have a very caring niece who would like me to go further with my psychological therapy before making further steps in my exploration of possible surgery. I feel I have to listen to someone who loves me.
But I still feel this special bond with those of you who share my expericence with scoliosis and naturally have emphathy with what I am experiencing .
By the way, Chris, Maria told me they would be starting a scoliosis support group at the U of C hospitals and I have asked her to keep me posted. I intend soon to give her a call to see if things are working out on that end.
I am still hoping your surgery goes well and am interested in following your progress.
All the best,
Donna

[CHRIS WBS]

Donna,

Thanks for the input about the upcoming support group at U of C. I'll be watching for that. They used to have one at Northwestern that Dr. Ondra initiated, but I have not seen anything posted recently on their website about upcoming meetings. And when I called the hospital to inquire, no one seemed to know anything about it. But the two women from my support group were introdued to Dr. Schafer through their supprot group and that's how they ended up having their surgeries by him.

Chris