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One of the most
frequent questions I receive from newly diagnosed patients is what can they
expect long term. Unfortunately, I can't answer this question
satisfactorily; it is one of the big unknowns. There is no strong,
clear evidence on long term outcomes either after surgery or after a period
of just treating symptoms. What we do have is series of neurosurgeons
reporting their results after treating groups of patients.
There are three
problems with the current research as it relates to definitively
establishing the long term success of treatments:
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Because there
are many variations of surgical technique, treatments are inherently
different among different reports of patient outcome. Almost every
neurosurgeon I have asked describes the basic decompression technique as
technically simple, yet also believes that success is highly dependent on
the individual surgeon. If the operative technique is at the stage
where success is dependent on an individual surgeon, then it is difficult
to establish outcome results across many surgeons.
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There is no
standard for defining success; every surgeon uses different criteria which
often fails to take into account the real world of the patient. Most
outcome type publications use statements such as "the MRI showed adequate
decompression", "the syrinx stabilized or reduced in size", or "most
symptoms had resolved by final follow-up". Besides being vague,
these types of measures fail to take into account whether the patient has
returned to his/her former lifestyle. The bar is set too low by
defining success this way. What is needed is a standard outcome
measure which takes into account objective medical findings such as MRI
results and neurological exam results, but also factors in issues such as
whether a person can still work, has to work at a different job, their
emotional state (are they depressed?), what are their physical
limitations, were any life plans altered such as marriage and children,
etc. A standard outcome measure MUST take into account what a
patient perceives as success - no symptoms and a normal life.
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The follow-up
period in most outcome studies is too short. Long-term recurrence is
a well recognized event, yet the follow-up period for most studies is 2
yrs or less. Surgeons counter this by saying that they would report
if any patients experienced problems down the line. That's all well
and good except if a person has problems 5-10 years later, will they
return to the same surgeon?
It's time to
raise the bar on success and establish scientifically what outcome can be
expected using current treatment techniques. What's needed is a
long-term study - involving many surgeons - which uses a definition of
success that takes into account the patient's perspective. I believe
it is up to the National Institute of Health (NIH) to sponsor such work and
lead the effort. As reported in this issue, there is a new Director at
NINDS, the NIH branch responsible for Chiari and syringomyelia, let's let
her know what the patients expect out of her $1.5 billion dollar budget.
How to contact
the Director of NINDS:
Story C. Landis, Ph.D.
Director, NINDS
NIH/NINDS
Office Of The Director
Building 31, Room 8A52
31 Center Dr. MSC 2540
Bethesda, MD 20892 - 2540
email:
landiss@ninds.nih.gov
phone: 301-496-9746
NINDS Feedback Page:
http://www.ninds.nih.gov/contact_us.htm
So what can people expect with Chiari and
syringomyelia? My unscientific guess (and believe me this is just a
guess) is that about 20% - 25% of people either stabilize on their own or
have a very successful surgery, are left with little or no permanent
disabilities, and can pretty much put it behind them and move on with their
lives. On the flip side there is probably another 20%-25% who
progressively get worse, undergo multiple surgeries, experience numerous
complications, and end up with severe disabilities and most likely crippling
pain. This leaves leaves 50%-60% of the people somewhere in the
middle; some complications, some pain, some disabilities, and lifestyle
modifications to varying degrees. There is no way I know of to predict
just after diagnosis which category someone will belong to in the end.
So to everyone who's asked me what will happen, I apologize; I just don't
know.
- Rick Labuda |