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Conquer Chiari recommends that anyone diagnosed with
Chiari be evaluated by a neurosurgeon. Since the primary treatment for
Chiari surgical, we believe that neurosurgeons are in the best position to
provide treatment advice to patients.
As a policy, Conquer Chiari does not refer people to
specific neurosurgeons. This is because:
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There is no professional certification or
sub-specialty for Chiari
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There is no objective data available on how
successful individual surgeons are
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Each patient is unique and is likely to look for
different things in a neurosurgeon
As such, we recommend that each patient (or parent)
do the work necessary to find the neurosurgeon that is right for them.
To help with this, the following tips are are
excerpted from Conquer Chiari: A Patient's Guide.
Keep in mind these are just suggestions, you may
decide to use all of them, use some of them, or not to use any of them at
all. There is no right answer, but like anything else, the more work you
put into it, the better the result is likely to be.
1.
Set emotion aside. This can be extremely difficult to do,
especially if the diagnosis has come as surprise, or if you have been told
for years there is nothing wrong. However, this is an important decision,
and a methodical approach to the matter can help. If necessary, recruit a
family member to help you through the process.
2.
Establish your criteria. Everyone is looking for something
different. What is right for one person may not be right for someone else.
Think through what YOU, as a patient, feel is important in a doctor. Some
items to consider:
a.
Location- Are you willing to travel or would you rather
stay local near your support system. Think about this carefully, traveling
when you are going to have surgery can entail a lot of added effort.
b.
University Based or Private Practice- Oftentimes,
people want to know where the research is going on. This is a perfectly
fine approach, however, keep in mind there are many surgeons in private
practice, who have not published research on Chiari, who are perfectly
capable of treating Chiari patients. Think through carefully what you want.
c.
Someone who does a lot of Chiari surgeries or a general
surgeon? Like (b.) above, some people are only comfortable with someone
who does many Chiari surgeries a year, and that is fine. But if you don't
want to travel, another measure of a surgeon's skill is how many surgeries
they do a year of any kind. A very busy surgeon is likely a skilled one
(because many people want to see him or her) and has also built up a wide
base of surgical experience.
d.
Is bedside manner important? Do you care more about the
surgeon's skill, or his ability to be compassionate and listen to you, or a
combination of both. There is no right answer, just individual opinions.
e.
With what you know about yourself, do you have a
straightforward case, or a complicated one with multiple problems?
Someone with a "simple" Chiari and no other abnormalities may be comfortable
with someone who does not focus their practice on Chiari. On the other
hand, someone with a complex anatomy, or whose surgery failed the first
time, might want to get an opinion from someone with a lot of Chiari
experience.
f.
Insurance and cost- The harsh reality is that
most insurances won't pay (or will pay less) to go out of region/network.
You have to weigh the costs of going outside of insurance (if you have
insurance) against the benefits to you.
3.
Create a list of candidates. This is the step where you
create a pool of potential doctors to match against your list of criteria.
You can build the list from a number of sources, including:
a.
The professional societies' websites often contain databases of
doctors which can be used to find ones in certain areas. The AANS site,
www.neurosurgerytoday.org
can be searched by ZIP code to find board certified neurosurgeons in
specific geographic areas.
b.
If you live near one or more Universities with medical schools, their
websites will list neurosurgical faculty.
c.
Ask everyone you know, especially people in the medical community,
who they would go see.
d.
Use the internet - refer to site in (3a.) - to identify surgeons and
other doctors who do research on Chiari and SM.
e.
A lot of people use chat rooms and message boards to find doctors. Be
careful about getting doctor recommendations from message boards. People
who have had good experiences with doctors may not necessarily participate
in chat rooms, so while it may be good input, it should be considered in the
context of all the information gathered.
4.
Create a short list based on your criteria. Do what research you
have to do to create a short-list of candidates. You can use the internet
and phone to learn more and eliminate people from your list based on what is
important to you. Or create multiple lists, for example doctors near by, or
doctors you would see if you decide to travel.
Do more thorough research on the doctors that made the short list. Ask
everyone again about these specific doctors. Have they published any
research? Have they won any awards? Are they listed in America's Top
Doctors?
Compare your list (plus research) to your criteria list and make a
prioritized list. From this, you can set up appointments and see who
you like.
Trust Yourself. When you meet with the doctor do you get a good
feeling? Can you communicate with him/her easily? In the end you may have
to trust yourself to this person. Can you see yourself doing that? If so,
you probably have found a good doctor for you. If not, consider seeing
someone else.
Don’t let other people tell you
who you should see. Do the work yourself; be smart and do your homework,
only you can decide who's right for you.
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