First – my disclaimer. I know nothing except what I’ve learned from reading and experiencing. I am not a medical person. (I just had to say all of that even though I believe it is quite evident in my answers – ha)
Q: Where is your original website that is referenced in your book?
Q: How did I suspect that I had a tumor?
For several years I had noticed a decrease in hearing on my right side. I also noticed an increase in the ringing in that ear. I decided to get my hearing checked out to confirm what I thought I already knew – just getting old and years of cell phone and airplane abuse. However, what I learned is that I had a brain tumor, called an Acoustic Neuroma(AN). The docs said that it was NOT due to cell phone usage. But I have my doubts given that my usage dated back to bolted-in car phones with crackling back in the 90’s. Some research has shown a link.
Q: What the heck is an Acoustic Neuroma?
A: First, it was a huge relief to learn that an AN is BENIGN. It is a well recognized tumor when seen on an MRI image. There is a great association dedicated to this type of tumor. It is called, coincidentally, Acoustic Neuroma Association, http://www.anausa.org/ . Being an analyst, I spent a lot of time researching many sites, including some with videos of the surgery. The ANAUSA site provided great information, as well as posts from people who have also gone through this “adventure”.
I borrowed the definition from their site,(what-is-acoustic-neuroma) which follows: “An acoustic neuroma, known as a vestibular schwannoma, is a benign (non-cancerous) growth that arises on the eighth cranial nerve leading from the brain to the inner ear. This nerve has two distinct parts, one part associated with transmitting sound and the other with sending balance information to the brain from the inner ear. The eighth nerve, along with the facial or seventh cranial nerve, lie adjacent to each other as they pass through a bony canal called the internal auditory canal. This canal is approximately 2 cm (0.8 inches) long and it is generally here that acoustic neuromas originate from the sheath surrounding the eighth nerve. The seventh or facial nerve provides motion to the muscles of facial expression.”
Q: OK, how do we get rid of an AN?
A: There are three treatment options.
First is to watch it over time to see if it is growing. That was ruled out for me because it was too big to ignore, given how long it took to find. I was having symptoms that indicated that it was interfering with my quality of life.
The second option is to use Gamma Knife radiation therapy. This is a treatment that zaps the tumor and kills it. It may or may not shrink over time. But it will not grow. That option was ruled out for me because of the location and size. My tumor was pushing back into the brain, and up against the brain stem. If radiation was not successful, it would be very difficult for the doctors to go back in and remove the radiated tumor, which would be more adhered to the healthy tissues.
The third option for Acoustic Neuroma treatment is surgery. This is obviously the most invasive and traumatic to the body. But it is also provides the most complete removal of the tumor. There was a chance that they would have to leave remnants of the tumor attached to nerves in order to preserve the nerves. However, those remnants will not grow because they are benign and their blood supply will have been removed.
Q: Talk to me about the term “facial weakness”
A: Oh yes, that is a challenging one. Simply put, “Facial Weakness” refers to the level of paralysis that one has as a result of damage to the facial nerve on the tumor side. This may happen slowly as the tumor grows, or suddenly as a result of surgery(or radiation).
When I was diagnosed, I was told that I may or may not have “Facial Weakness” on the right side when the tumor was removed. The tumor inside the skull is on the auditory nerve, which is right next to the facial nerve. Things get rather crowded in there as the tumor grows, so the facial nerve is stretched. The extent of damage depends on how much it stretches, how stuck it is to the tumor, and how much trauma it experiences as a result of surgeons removing the tumor.
If the nerve is still intact and healthy after surgery, YAY! However, if there is damage it ranges from a severed nerve to a “temporarily” non-working nerve to a minimally damaged nerve. Paralysis is the result, which is referred to by a gentler term “facial weakness.” Anything short of a severed nerve will regenerate in to a certain extent.
As with anything AN related, this will be very individual. For me, the nerve was damaged to the point that I had no movement at all. Over seven months, the nerve SLOWLY regenerated, and eventually healed partially into a combination of normal and Synkinesis.
Q: What is Synkinesis?
A: Synkinesis is an incorrectly healed nerve. Fibers of the nerve on the the brain end have healed to the wrong end of a nerve fiber that goes to the face. YEP, it can be that weird.
Q: What is a “gold weight”?
A: If you have facial paralysis that will last more than a few months, your medical team may recommend implanting a gold weight in your eyelid. What that does is help your eyelid close by weighting it a bit. Example, instead of 50% closure, you may get complete or 90% closure. If you regain adequate movement over time, the weight may be removed with an outpatient procedure that leaves you with a black eye for a few days, but no bump on your eyelid.
Cool website. I loved the book and am so excited that it’s at Barnes and Noble in Portage now!
Very true, I enjoy the comments, unless you talk to someone who has had a Acoustic Neuroma they do not really know what you had . I had mine removed 15 years ago at mayo and I still have partial numbness. I also lost complete hearing loss in my left ear and it is hard to get a hearing aid to work in one ear.
It sounds like we have had very similar experiences, but I am a few years ahead of you. In 2013 I had a craniotomy for a vestibular schwannoma the size of a small lemon and involved with my 7th, 8th, and 9th cranial nerves, then gamma knives several months later. I look forward to reading your book.
Thank You You have put words to much of what my life has been for the past 15 plus years have been. Post golf ball size AN and daily head pain, left ear deafness and constant ear buzz. got to love it right.