Bob VogelQ. I’m 44 and in my 20th year as a T8 paraplegic. I recently found out I have Charcot’s spine

[June 2016] and my L1 vertebra has seriously deteriorated. I was referred to a surgeon who wants to extend my rods down to L3. He says he has done lots of this type of surgery, but hasn’t done it on someone with a spinal cord injury.

In the X-rays my spine is nice and straight, and it isn’t causing me any pain. If anything I seem more flexible, so I’m unsure whether or not I really need the surgery, and if I do, if this is the best surgeon to do the job.


I feel kind of weird asking for a second opinion, sort of like I’m going behind my surgeon’s back. On the other hand I don’t want an unnecessary surgery or end up worse off than I am now. How do I find the best surgeon for my condition? And how do I go about getting a second opinion?

— Todd

A. Because it is common to put doctors, and even more so, surgeons on a pedestal, questioning their recommendation, and/or seeking a second opinion can seem daunting, which is unfortunate because lack of questioning and getting second opinions sets up the potential for a poor outcome — bad for patient and surgeon alike. The medical professionals I asked said questions, including asking your doctor to consult a physician trained in physical medicine and rehab, or seeking a second opinion, should be welcomed by your physician. If it isn’t, that is a red flag.

“The first thing to remember is to treat each doctor appointment like an interview process. Don’t be afraid to ask questions,” says Andreanna Lawson, RN, of the Craig Hospital Nurse Advice Line.

To find a top surgeon, start by finding one that specializes in the type of surgery you are having done, such as spine or joint (shoulder or hip), rather than a general orthopedist, says Dr. Douglas Garland, an orthopedic surgeon and former director of neurotrauma at Rancho Los Amigos Rehab Center. Garland advises that you want a specialist who performs a minimum of 50 or more of that type of surgery a year. Also, top surgeons often come highly recommended from other doctors, as well as from nurses and therapists (PT and OT) and former patients.

Unfortunately, part of finding a surgeon comes down to your insurance carrier and ability to travel, says Garland. However, you can try making a case to your insurance company for going “out of network” if they don’t have a comparable surgeon in their system. If travel is an issue, be sure to compare the temporary burden of travel to where the best surgeon is with the importance of having the best chance at a good surgical outcome, especially for more complex surgeries.

“These days you can research the web for medical centers and specific doctors that practice there, including information on their training, background, area of specialty and qualifications, which makes finding the best surgeon much easier,” says Garland.

First, says Garland, whether it is a new spinal cord injury, acute injury, or chronic problem, contact one of the Model System Centers — hospitals that do collaborative research on SCI and provide information and resources to people with SCI, their families and health care professionals (see resources).

Additional excellent places to find top surgeons are university teaching hospitals, says Garland. For instance, University of Washington, in Seattle, has a medical center with a prominent Physical Medicine and Rehab program. Search “University of Washington Medical Center” and their page comes up. From there you can fine-tune your search to SCI or specific types of orthopedics (such as spine). You’ll see a list of their physicians, training, background and qualifications.

Kathleen Dunn, clinical nurse specialist and rehab case manager, adds, “Surgeons who practice in trauma centers are usually the most experienced in spinal surgery, and this includes a lot of teaching/university hospitals.” Another way to look up a top surgeon is to ask your primary care physician or your PM&R doc — they often know the experts in this area and can make a referral, says Dunn.

“It is important to find a surgeon who either has good knowledge of SCI or is willing to consult with a PM&R doctor,” says Lawson. Craig Hospital has a consultation system for surgeons to consult with PM&R physicians via the Craig Hospital CNS Medical Group — eight on-site physicians whose full-time practice is spinal cord and brain injury rehabilitation. “If the surgeon is willing to do this, it is a big plus in their column,” says Lawson. “It’s a red flag If your surgeon isn’t willing to do a consult, and perhaps, time to seek a second opinion.”

“Before your appointment, prepare a typed list of specific questions about the problem you are having. Keep the questions succinct and to the point,” says Lawson.  “Be sure to write down the answers the physician gives you, while he or she is giving them.” Dunn adds that it is important to ask how many of these surgeries they have done on a person with chronic SCI. “Don’t be their first, if at all possible,” she says. “It is also appropriate to ask how many of these surgeries the doctor does in a month or a year. For most surgeries, if it is less than 10 a month, I would look elsewhere.”

As far as second opinions, Dunn says a surgeon should not be threatened or upset if you tell them you want another opinion, and some may even be able to give you some referrals. “My preference is that the physician with the second opinion practices at a different hospital or in a different group practice than that of the first surgeon if at all possible.”

When it comes to seeking second opinions, Dr. Jon Arnow, 60, a retired ear, nose and throat specialist and surgeon from Reno, Nevada, in his 16th year as an L1 incomplete para, concurs with Dunn. “As a surgeon, I can say that a skilled, confident physician will be fine with their patient seeking a second opinion,” he says.  “In fact a second opinion, or rather a referral from another surgeon, saved me intolerable pain.” It turns out his pain was emanating from aggravated nerve roots caused by poorly aligned rods installed to repair lumbar spinal damage that was caused by years of mono-skiing. Surgeons in the Reno area said there is nothing more that could be done for his unbearable pain. However, one of his previous surgeons has a brother who is a spinal surgeon at UCSF Hospital in San Francisco.  “He got me in to see their top spinal surgeon, Dr. Sigurd Bervin. He did an extensive surgery, including custom-formed rods. He managed to straighten my spine, and the nerve root pain in my hip is gone.”

Arnow adds that unless it is an emergency situation, take your time and research your surgeon. The extra time you take researching your condition as well as your surgeon, and seeking second opinions — which may end up saying “the surgeon you are with is the best in the business” — gives you the highest probability of a successful outcome.

The last but not least word on second opinions comes from Eric Stampfli, 58, from Danville, California. Stampfli has had too many surgeries to count in his 40 years as a T11 para, from skin flaps to a secondary spinal fusion. “Although the web is a great resource to find a first or second opinion, I’ve learned that among the best resources is asking therapists, X-ray technicians, and nurses as well as other wheelers,” he says. “They are a valuable source of information because they see the outcome of a surgeon’s work, or in the latter case, quite literally ‘where the rubber meets the road.’”

For more information and questions to ask prior to a major surgery, see “Hospital Stay Survival Guide” in the March 2013 issue of New Mobility: www.newmobility.com/2013/03/paramedic-hospital-stay-survival-guide/.

Resources
• Charcot’s Spine, a Potential Complication of Spinal Fusion, www.newmobility.com/2016/06/charcots-spine/
• Craig Hospital Nurse Advice Line, 800/247-0257
• Craig Hospital CNS Group, craighospital.org/about/medical-staff
• Model Systems, www.msktc.org/sci/model-system-centers
• UW Medical Center, www.uwmedicine.org/uw-medical-center/patient-resources