Hello everyone! One of our most popular blog-articles on the Schwannoma Survivors & Schwannoma Fighters blog has long been the blog "What to Ask the Doctor if You Have Just Been Diagnosed With a Schwannoma." But for those who have Acoustic Neuromas / Vestibular Schwannomas - many of the details of what a patient may need to know can differ from those who suffer from the variety of other commonly known Schwannomas. So, we enlisted to help of our advisor to the page for AN / VS, Leanne Haroun. Leanne has a unique perspective because she herself had an AN, and she is also a third year student in medical school. So with her assistance, we'd like to offer you this blog of useful questions to ask your doctor if you have just been diagnosed with an Acoustic Neuroma / Vestibular Schwannoma. We hope it helps you in getting the answers you need, and the best possible treatment outcome!
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1) What is your area of specialization? How many vestibular
schwannomas have you operated on?
Why this
question? It is in your best interest to find a neurosurgeon or ENT who
has extensive experience with AN/ VS. Some neurosurgeons specialize in
only nerve tumors of the head, and therefore if one can seek out surgeons who
have operated extensively on nerves such as the cranial nerves where AN / VS
are found, it gives you the best possible chances at a good outcome, by way of
having a surgeon who is a specialist to that area of the body, performing the
surgery.
2) Which surgical approach will you be taking?
What are the pros and cons of this approach? Are there other alternatives?
Why this
question? There are 3 different approaches: 1) retrosigmoid/suboccipital 2)
translabyrinthine and 3) middle fossa. Depending on the goals of the surgery
(i.e. hearing preservation in patients who still have functional hearing on the
tumor side), there are pros and cons to each approach. Because I did not have
any noticeable hearing loss on my right side (where my tumor was located), my
surgeon took the retrosigmoid approach, which makes hearing preservation
possible. But if you are already deaf on the side of your AN/VS, your surgeon
may opt for the translabyrinthine approach.
3) Will you be working with ENT (ear, nose & throat
surgeon) to remove my tumor?
Why this
question? Some AN / VS specialist surgeons will work in teams - in some
cases a neurosurgeon teamed with an ENT ( Ear, Nose, and Throat specialist).
In other cases an experienced AN surgeon will do the entire
procedure.
4) What are my chances of hearing preservation / facial nerve
preservation?
Why this
question? It is possible to suffer some degree of loss of sensation or
facial paralysis after the removal of some AN / VS tumors. So it is in
the patient's interest to try to learn just how much the nerve is expected to
be affected by the surgery, and what prospects the surgeon gives the patient -
given the size and location of the tumor, in the interests of keeping the
maximum possible preservation of the facial nerve. (Leann has written a
postscript with further details on this question. Scroll to the end of
the article to read )
5) How long will the surgery be? How much of the tumor
do you expect to remove?
Why this
question? In order to preserve maximum nerve function after the
surgery, a significant number of AN / VS 's will be partially removed. It may be helpful to the patient to know this in advance, and to better understand the surgery, the duration of the surgery, and expectations of results.
6) Will I be in the Neuro ICU?
Why this
question? Many Schwannoma surgeries require a short stint in the ICU,
often 1 to 2 days after surgery. It is helpful to know if this is expected.
7) What should I expect after surgery? Potential
complications?
Why this
question? It is a simple matter of getting a prospectus as to what might
be expected post surgery. It is helpful to know if you need to plan for
rehab, for family or loved ones to assist in your care after surgery - and as
well, to know what risks of complications are present.
8) How long will I need to recover? Do you think I may
need rehab? How much assistance will I need at home and for how long?
Why this
question? As stated above, you want to make sure you have the necessary
assistance in the days and weeks after surgery. And knowing what plans
the surgeon has for your rehabilitation and recovery can only better
assist you in planning and making sure you fully understand the post
surgical time period you will experience.
9) Do you think I could have neurofibromatosis type 2?
Why this
question? Neurofibromatosis type 2 is a genetic condition understood to
be present in some patients who have Acoustic Neuromas / Vestibular
Schwannomas. (Leanne has added further notes on this in the postscript to
this article. Scroll to the end of the article to read . )
10) Will it grow back? What would my options be at that
point?
Why this
question? It is always helpful to know how much of the tumor the
neurosurgeon believes he or she can remove. And in that same light, it is
also helpful to know if the surgeon has thoughts on the risks of regrowth even
if he or she believes the entire tumor to be removed. It is certainly in
the patient's interest to do their best to plan for the future - including
potential means of treatment should a regrowth occur.
Postscript notes
Here are a few further details provided by Leanne Haroun,
relative to several of the questions stated above. These are details she
wrote:
For
number 4 - I'd like
to add this: the goal of any neurosurgeon is to remove as much of the tumor
while minimizing any damage to the delicate nerves in that area - mainly the
vestibulocochlear nerve and facial nerve. AN/VSs grow off of the
vestibulocochlear nerve, which is responsible for balance and hearing.
Because the tumor grows directly off of this nerve, some degree of
hearing loss on the side of the tumor must be anticipated. The facial nerve,
which supplies the muscles responsible for smiling and eye closure, sits right
above the vestibulocochlear nerve. Because of this, facial nerve damage may be
unavoidable as well. In general, the larger the tumor, the higher the chances
of damage to the vestibulocochlear nerve or the facial nerve. There is good
news though! Today, neurosurgeons are able to directly monitor all of the
nerves surrounding the tumor during surgery and because of this, avoidable
damage can be minimized.
My tumor
was 2.3 cm (considered "moderately" sized) and my surgeon was able to
preserve both my hearing and facial nerve function, although my hearing on the
right side is definitely not as good as my left side. I can hear in my right
ear, but understanding someone if I use my right ear to talk on the telephone
is a bit harder as the words sound "fuzzier." Otherwise, it is hardly
noticeable.
For number
9 - NF2 is a
very rare genetic syndrome characterized by bilateral AN/VSs as well as other
types of tumors of the nervous system. Only around 5% of people with AN/VSs
actually have NF2. I only include this question because I myself was worried
about this prospect because I was diagnosed with my tumor at a much younger age
than normal. Most people diagnosed with AN/VS are between the ages of 30 - 60
and do not have NF2. When you are diagnosed at an age younger than 30 (and
especially if diagnosed at 20 or younger), NF2 becomes more of a concern.
Therefore, I believe it is prudent to ask about NF2, especially if you are in
this younger age bracket.
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Disclaimer: Leanne Haroun and Neil Myers assume no liability whatsoever for the comments or advice offered in the content of this blog. Leanne and Neil have offered advice generally on the issues relating to treatment of Schwannomas - however Leanne Haroun, Neil Myers, and the Schwannoma Survivors & Schwannoma Fighters group always insist that a person should make all major medical decisions in consultation with one's own physician.
