Tuesday, October 20, 2009

The words you never want to hear

I had thought long and hard about wether or not to talk openly about this. But given some thought I realized that 1) It was not very kind to selectively choose who I would and wouldn't confide in and 2) I did not want a vast array of rumors flying around. I used this medium because I thought that a mini blog on facebook, was to little and I didn't want to drop a nuck bomb without full explanation. So you can read through the whole story and explanation or skip through to the juicy details your choice. So easiest for me is to start at the begging and to tell the whole story.

For the vast majority if my life I have had issues with my left ear. At times I have passed hearing test perfectly and other times showed signs of hearing loss, no one ever knew the cause and it was associated as a byproduct of chronic tonsillitis. This problem has continued in Germany, I was having issues with the hearing cutting in and out, and chronic ear aches as well as tinnitus. I was referred to a HNO specialist.

So I attempted to go to the appointment alone, and discovered rather quickly she was not used to talking to people with limited German, so DH came to help. In the mean time she did the standard exam and then a standard hearing test. As before my hearing test came back with optimal results, which contradicted the symptoms I had been experiencing. DH came along and was better able to communicate the symptoms and explain everything to me.

She concluded further testing needed to be done and she did a BERA hearing test.

Brainstem evoked response audiometry (BERA or ABR) involves sophisticated, computerized equipment. Sounds are placed in the ear, and the brainstem's response is recorded from electrodes (similar to electrocardiogram electrodes) that are taped to the patient's head. This testing is extremely helpful in:

  • Distinguishing sensory (inner ear) from neural (nerve) causes of hearing loss

  • Helping to localize problems in the brainstem auditory pathway

  • Determining the ability to hear soft sounds, in selected cases

When the results of the test came back she was able to see that something is blocking the nerves in between my ear and my brain. This result is characteristic of a illness known as acoustic neuroma.

An acoustic neuroma, correctly called a vestibular schwannoma, is a benign primary intracranial tumor of the myelin-forming cells of thevestibulocochlear nerve (CN VIII).[1]

The term "acoustic" is a misnomer, as the tumor rarely arises from the acoustic (or cochlear) division of the vestibulocochlear nerve. The term "neuroma" is also a misnomer, since it means "nerve tumor" but an acoustic neuroma is a Schwannoma. The correct medical term isvestibular schwannoma, because it involves the vestibular portion of the 8th cranial nerve[2] and it arises from Schwann cells, which are responsible for the myelin sheath in the peripheral nervous system.

Wikipedia


In laymens terms, acoustic neuroma is a benign slow growing brain tumor. Yes I said it, scary word Brain tumor. You can only imagine the shock and terror I experienced when I was told this. The statistics have been set at 1 in 100,000 having such a tumor, but with the increased use of mri to detect tumors it has been found they are much more prevalent and often go undetected for years. Most do not show major symptoms until the age of 30.


So where do we go from here. Well first things first I will go in for a MRI on the 5th of November and we will go from there. If it is acoustic neuroma the treatment varies based on the tumor. Small ones are monitored yearly via MRI, while larger ones have to be removed to eliminate risk of complications. The acoustic neuroma is the only known medical issue to cause these symptoms, if it is found that is not the cause, then it remains a mystery and only the symptoms can be treated. In either case I will need to use a form hearing aid in my left ear.


So that is where things stand as of now. I am doing ok. Though I ask that everyone keeps me in their prayers. As anyone can imagine being told you may have a brian tumor, is a traumatic experience to say the least. I am terrified, but hopeful with god at my side I will come through ok. I hope and pray that it is not a tumor. But at the same time I know that I am in a country with wonderful healthcare and I will get the best treatment possible. So before we press the panic button lets take a step back, and realize it is just a possibility, a scary one all be it, but not definitive.


I love you and I miss you


S

2 comments:

Jeannette said...

Hi Serena! My thoughts are definitely with you! I saw your earlier comment about the MRI and how Toni's joke wasn't very funny but obviously I didn't get it then... if you want to get together for a drink or to talk (or listen!) let me know - got some coupons for free cappucino from some place downtown that I have to try out! MRIs really aren't bad at all, though. Hang in there!

Jo said...

Wow, I do know how scary something like that can be, especially when you are in a strange country where they speak a strange language.

When I clicked on your blog to see your photos, I just happened to click on the next article (this one) as I had read your blog earlier and found it funny and interesting. Then to read this, I was so shocked. I do hope you will come onto the Ladies forum and share with us. Get some good support. This is important when you don't have family around you.

The MRI is not so bad, when I get mine (I have MS) I imagine it is like being inside of the wheel of a train and then I try and find a beat or meditate. the first one was shocking though, as I had no idea it would be so noisy. No one told me!

Will be thinking of you.
Jo (aka moondancer)

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