I am the admin of an online support group for MVD Patients. From time to time, a particular topic appears with enough frequency that I pen a post to explore the topic thoroughly. Recently, one topic that came up was the importance of informed neurosurgeon selection. I’m republishing my post here in order to increase the number of people who read it, particularly those who may be in the planning stages of an MVD. The theme of the post is something worth repeating far and wide. It is:
The single most important element of a successful MVD outcome is the neurosurgeon you select.
Selecting an MVD neurosurgeon isn’t easy. There just aren’t enough of them to go around.
How many neurosurgeons are there?
There are only about 3,689 neurosurgeons in the US to treat the entire population of roughly 311 million. That’s 1 neurosurgeon for every approximately 84,300 people.1 Why the scarcity?
- Annually, fewer are finishing their residencies: “Each year only approximately 160 neurosurgery graduates will complete their residency.” 1
- The time commitment is excessive. “The length of post graduate residency training for neurosurgeons is among the longest, now at seven years. Subspecialty fellowship training adds an additional one to two years.” 1
- Fewer people are attracted to the field: “The rigor of a neurosurgical residency attracts a smaller pool of applicants due to, among other things, the length of training and soaring costs of medical school; long work hours, higher case loads and more on-call time; high professional liability insurance premiums and risk of lawsuits; and decreasing reimbursements and escalating practice expenses.” 1
- The cost is sky high: “The average cost to train neurosurgical residents hovers around $1.2 million per resident over the course of a seven-year residency.” 1
If that doesn’t concern you, these things should. Currently, we’re facing “an overall aging neurosurgical workforce, forty-six percent of which are age 55 and older. The pipeline for becoming a board certified neurosurgeon is long – as much as 18 years from the start of medical school to certification — so replenishing the neurosurgical workforce is no easy task, and producing 160 neurosurgeons per year will certainly fail to keep pace with patient care demand. Factoring in new neurosurgical treatments, the demand for pediatric, trauma and emergency neurosurgical care, and an aging neurosurgical population, our need for neurosurgeons is on the rise even while the 1/84,300 ratio dwindles.” 1
You must remember, these are the numbers for general neurosurgery. When you drill down on single subspecialties, the numbers get much smaller. The fact that there are any MVD specialists at all is testimony to the dedication of those special surgeons. We know that a majority of the 3,689 neurosurgeons are generalists, which leaves a minority to cover all of the 100+ subspecialties. It is no surprise that there are no more than a handful of neurosurgeons who specialize in microvascular decompression.
Thankfully, there are relatively few of us in the general population who find ourselves in need of MVDs, because neurosurgical MVD specialists are even rarer than the subset of the population they serve.
Sometimes, you can do your best and still choose poorly.
My first MVD was 10 years ago. I was new to TN and I definitely didn’t have a support network to learn from. Starting from scratch, I did a lot of research on the surgery online. There were no Facebook support groups, Wikipedia was not reliable. Even Google was a questionable source of information. There was very little to be found, and what was out there didn’t always agree. I went to a TNA conference in Philadelphia where I met neurosurgeon, Dr. Ben Carson. I later saw Dr. Carson as a patient in Baltimore at Johns Hopkins to consult on my case. Before that, I flew to Pittsburgh to consult with Dr. Peter Jannetta, pioneer of MVD for facial pain. I sought answers from every authority I could find.
During the time of research and decision making, I had no idea that some surgeons were trained in the Jannetta approach to MVD and some weren’t. I didn’t know that those Jannetta-trained surgeons do more extensive MVDs and have better overall success rates. I didn’t know that the 80% success rate was based upon a study of these types of surgeons. When I finally had to choose, I decided upon Johns Hopkins with Dr. Carson, but then found that I would have to stay within North Carolina, due to my insurance restrictions. It was April and I couldn’t switch insurance plans until August. I asked Dr. Carson if he knew any good MVD surgeons in NC. He highly recommended one, someone who had done his residency with Dr. Carson. I chose him because I didn’t think I could make it until August, but how I wish now that I had tried.
My first surgeon said he only found one “unremarkable” compression. He “stippled the nerve” (a rhizotomy) so I “wouldn’t have done it for nothing.” I did not know that he might perform a rhizotomy and, ironically, I had chosen MVD for the very reason that I didn’t want a rhizotomy. I wanted no damage to be done to the nerve. The surgery and the rhizotomy were both failures.
Where he found one “unremarkable” compression, my second surgeon 8 years later found at least 9 compressions on 4 different nerves. I even had a blood vessel running straight through my trigeminal nerve. What was actually there bore little resemblance to what my first surgeon claimed was there. Additionally, the padding that the first surgeon used to decompress the only vascular compression he found is now calcified and attached to my trigeminal nerve and cannot be surgically removed. I now have trigeminal deafferentation pain, for which there is no satisfactory treatment and no surgical option. Clearly, a better choice of surgeon would have made a dramatic difference in my outcome.
What’s the Success Rate, Really?
The MVD success rate of 80% that is oft quoted is based on a study done in 1996 which says “…one year after microvascular decompression 80 percent of the patients had excellent results and 8 percent partial relief; 10 years after operation, 70 percent had excellent results and 4 percent had partial relief.”2 That said, that study was done on patients operated on by MVD surgeons at Presbyterian–University Hospital in Pittsburgh. Dr. Jannetta himself was one of the paper’s authors. That was their success rate. Other surgeons may quote that success rate, but what you need to know is the success rate of your surgeon. Unfortunately, there is no way to know the stats of a lesser qualified surgeon unless they have kept extensive follow up notes. Many surgeons don’t do follow up and don’t correlate their successes and failures.
Dr. Mark Linskey, University of California-Irvine professor of neurosurgery and practicing MVD specialist, wrote:
“While in expert and experienced surgical hands, microvascular decompression (MVD) can lead to durable complete pain relief in about 80% of patients, this still leaves one in five TN patients still suffering. Patients seeking care in the general medical community are not so fortunate. MVD results can vary significantly surgeon-to-surgeon. Empiric experience over the last 20 years in my practice, would suggest that the success rate among less experienced and expert surgeons might run as low as 50%.”3
How is a patient to know which surgeon is qualified to do their MVD when, without personal data to support the claim, general neurosurgeons will use the 80% success rate from the study of Presbyterian–University Hospital MVD patients done in 1996.
This is somewhat like a rookie Red Sox outfielder who never makes the lineup claiming David Ortiz’s batting average as his own just because he too is a Red Sox player. While it may be true that he’s been shown all the right things to do, in an actual game he chokes and strikes out. The fact of the matter is that he isn’t Big Papi. The rookie has to quote his own personal batting average. Shouldn’t neurosurgeons, whose stats are rather more important than ballplayers, also have to own theirs? Among the questions that you must ask your surgeon is, “What is your personal success rate with MVD?”
As if the challenge of finding a neurosurgeon who is qualified to perform an MVD weren’t enough, the problem is further compounded by insurance restrictions, geographic constraints, issues of affordability, and more.
Finding Your MVD Surgeon
There are resources you can avail yourself of when looking for a surgeon today. For the most part, these are things that were either unavailable to us a decade ago, or were barely available as they were in their infancy and little known.
I recommend a multi-step approach:
- Go to the database of online support groups and find the one/ones that suit you. Then join each of these groups and post the question, “For those of you who have had MVD, who did you use and would you recommend him?” The answers you get will vary from enthusiastic to straightforward. The people you reach will be the ones who are either eager to let everyone know how good their experience was or how dreadful their experience was. In your post, you may want to include disclaimers like, “PM me if you have something negative you want to share” just to make sure that you aren’t accidentally guilty of contributing to someone being slandered on social media.
- Search the internet for the names of the recommended surgeons. If you find any names in a community forum, this is a good place to learn more from the patient’s perspective. Whatever you find, read all of it so you can begin to form an opinion. And be critical. Some patients are never happy.
- Make a consultation with more than one NS. Choose your top 2-3 and make appointments with them. Take good notes at your appointments and ask good questions (see Interviewing Your MVD Neurosurgeon.)
- Choose your surgeon based on the criteria most important to you. Then you have done the very best you can to get the very best surgeon for the job!
A word of strong caution:
A word of strong caution:To my knowledge, there are no thorough databases of MVD surgeons or TN specialists online. There is, however, a popular TN site on the web that offers a “Physician Directory.” You should know that every physician included in that directory has paid a fee to be included. They are not included because they are recommended by their patients or their peers, and not because they ranked highly in an independent analysis. They are included there because they paid to be there, making this physician directory paid advertising.
The form for doctors wishing to be included in the directory states:
“To become a healthcare provider listed on the XYZ Site, please fill out the form below. An email will be sent to you with payment instructions, of which will allow you to be seen globally on our Find A Doctor page. Individuals with facial pain will be able to find you based on doctoral qualifications and geographical location quickly and efficiently.”
On their Disclaimer page, which I could only find by doing a search for “terms and conditions” the website states:
“XYZ posts these links as a convenient way for visitors to access third party information concerning health institutions, physicians, and others who offer services and products to those with facial pain conditions. XYZ has made no independent examination of the professional qualifications, education, experience or other credentials of those with whom we have linked, the validity or suitability of the services or products which they offer, or of the accuracy of the content of the linked sites. XYZ does not endorse any provider of services or products or any part of such content. All healthcare professionals and institutions posted on the healthcare provider site pay XYZ a professional membership fee.”
1. Statement of the American Association of Neurological Surgeons American Board of Neurological Surgery Congress of Neurological Surgeons Society of Neurological Surgeons before the Institute of Medicine On the Subject of Ensuring an Adequate Neurosurgical Workforce for the 21st Century. December 19, 2012 ↩
2. Fred G. Barker, M.D., Peter J. Jannetta, M.D., D.Sc., David J. Bissonette, P.A.-C., Mark V. Larkins, M.D., and Hae Dong Jho, M.D., Ph.D. The Long-Term Outcome of Microvascular Decompression for Trigeminal Neuralgia. N Engl J Med 1996; 334:1077-1084 April 25, 1996DOI: 10.1056/NEJM199604253341701↩
3. Linskey, Mark E., MD. The Research Imperative.↩