What took so long?

A cochlear implant (CI) is a pretty huge deal.  The decision to go through with it will probably be one of the biggest I will ever make in my life.  

After reading about CI technology (especially marketing material from CI manufacturers), and watching YouTube videos of activation experiences, the choice seems obvious.  They pop it in your head, switch it on a month later...and then it is like magic!  You can hear!

A no-brainer, right?

As with any decision in life, it was important to weigh the pros and cons.  A CI is not an impulse buy.  It is irreversible surgery.  There is no going back and changing your mind.

At one end, I have my safe place.  I have scraped by for many years with my trusty hearing aids, excellent lip reading skills, as well as ever patient and helpful family, friends and coworkers.  Yes, my hearing loss has worsened over the years, which has rendered life and work tiring and annoying, but at least it is comfortable.  I know what to expect, and have a list of strategies to fall back on.  I do not really know anything different.  This is my world - I have come to accept it.  

At the other end, is the great unknown.  Worst case scenario: going through with the CI has the potential to make things much worse (continue reading for more detail...).   Best case scenario: I could be able to understand speech without struggling, talk on the phone, and even appreciate music without lyric sheets.  This seems inconceivable to someone like me who has never been able to do any of these things.  

A person who has lost their (normal) hearing later in life may be more willing to accept and undertake risk.  My comfortable place would probably drive someone else INSANE.  They would be more willing to purchase an one way ticket out of it...no matter what.

With all of this in mind, I set about doing some research.  There is an overwhelming amount of information available on the internet: some biased, some factual, and the rest in between.

I have listed factors to consider below:

The biggie....

Hearing benefits range from near normal ability to understand speech to no benefit at all.  Outcomes vary, and depend on a variety of factors.  Some can be controlled (e.g. brand of device).  Others can not (e.g. duration of hearing loss).

The chart below summarizes a recent retrospective multi-center research study which investigated the effect of multiple factors on CI speech perception performance in quiet and in noise.

Lazard D.S. et al.  "Pre-, per- and postoperative factors affecting performance of post linguistically deaf adults using cochlear implants: a new conceptual model over time."  PLoS One.  2012; 7(11): e48739. 

Full text can be found here

It is difficult to predict how much or little someone will benefit from a CI.  In general, it seems like those who were late deafened (e.g. from meningitis etc.) benefit to a greater extent, and more quickly, compared to those who were deafened early in life (e.g.  like ME!).  The brain is a pretty amazing, complex organ.  It is impossible to forecast how it will respond to electrical impulses from a man made device - especially when it has been deprived of meaningful input for many years.

SURGICAL RISKS

• Injury to the facial nerve.  This nerve goes through the middle ear and controls movement of muscles in the face, as well as sensory input to the brain (e.g. taste).  It lies close to where the surgeon needs to place the implant, and thus can be injured during the surgery.  An injury can cause a temporary or permanent weakening or full paralysis on the same side of the face as the implant and/or changes to taste or sensation.

Facial Nerve

• Meningitis.  Inflammation of the protective membranes covering the brain and spinal cord, known collectively as the meninges.  This is why everyone has to be vaccinated prior to the surgery.

• Cerebrospinal fluid leakage.  The brain is surrounded by fluid that may leak from a hole created in the inner ear during the surgery.

• Perilymph fluid leakage.  The inner ear or the cochlea contains fluid.  This can leak through the hole created to place the implant.

• Infection.

• Blood or fluid collection at the site of surgery.

• Attacks of dizziness or vertigo.

• Tinnitus.  A ringing or buzzing sensation in your ear.

Keep in mind that the above are fairly rare complications.  The facial nerve is monitored closely during the surgery and the surgeon knows ahead of time if the anatomy of the nerve is abnormal (placing you at higher risk for injury).  All surgeries come with complications.  This is a fairly minor one, which is becoming more and more commonplace.

As you know, I have made it through my implant surgery, which was 2.5 weeks ago.  So far, I have only experienced minor alteration in taste, tinnitus (which apparently goes away after activation), as well as minor dizziness if I do too much.  The most significant issue so far has been ongoing neck pain in the area of my incision, which travels into my sternocleidomastoid muscle.  Hopefully this will resolve soon!

OTHER RISKS ASSOCIATED WITH CIs

• Loss of residual hearing.  The process of inserting the implant will likely destroy all remaining hair cells in the cochlea.

*** The above is why a CI is irreversible.  I will likely never be able to wear a hearing aid in my right ear again.  The hearing that I had (albeit negligible) was probably destroyed.

• Implant could fail.  This would mean reimplantation surgery, which exposes you again to the risks outlined above.

• May not be able to have some medical examinations and treatments.  For example: MRIs, neurostimulation, electrical surgery, electroconvulsive therapy, ionic radiation therapy.  

• May have unknown or uncertain effects.  The CI stimulates the auditory nerve with electrical impulses.  This appears to be safe, but long term effects are unknown.

• Implant could be damaged.  Contact sports, automobile accidents, slips/falls, or any impact that could lead to damage to implant, requiring more surgery.  The new implant may or may not work as well as the old one.

• Will have to use it for the rest of your life.  The CI company could go out of business, which leaves you high and dry for customer service, upgrades and replacement parts.

Keep in mind that this should not be considered a comprehensive list.  I have just summarized the major ones, or at least the ones most significant to me.

As you can see, the decision to go forward with a CI is not necessarily an easy one.  The professionals at Sunnybrook put you through extensive testing, including probing questioning about your expectations and mental stability prior to accepting you as a candidate for this surgery.   It makes me feel better to know that they would not have accepted me as a candidate if they did not feel I would benefit from it. 

Looks like I have jumped off a cliff attached to a bungee cord....lets just hope that cord holds!