Diagnosed at 59


Story Written by Author/Self

Pre-Surgery working at hair salon 2017

Around September of 2013 at 54 yrs old, I started with tinnitus and was later diagnosed with an acoustic neuroma benign brain tumor. It was affecting my hearing and after a short period of wait and watch, I opted to have the stereotactic radiation treatments in November 2014 to stabilize the tumor.  I lost most of my hearing in my right ear and wear a hearing aide, to give me a little amplification and drown out the hissing noise.

Twenty two months later,  I was at work one evening in October 2016 (I’m a hairdresser) taking a break in the staff room and waiting for my next client.  I’d been reading on my phone with my head down for about 30 minutes and when I stood up my legs went weak and for a few brief seconds – I couldn’t walk.
It felt indescribable and almost collapsed.  This was the first, of what I later called my “spells”.  I couldn’t move my legs where I wanted them to go.  It was a very scary feeling but as quick as it came, it went and I thought to myself “oh, that was weird.”

I had more “spells” after this which were happening more frequently so I made an appointment to see my neurosurgeon in Philadelphia and had an MRI.
I was utterly flabbergasted when he told me I had hydrocephalus.  I didn’t know a lot about this condition but knew enough to know that the remedy is brain surgery.  Which was the one thing, I didn’t want and avoided by getting radiation for the acoustic neuroma.  I was absolutely stunned, devastated, frightened and shattered.

So, I spent most of 2017 experimenting  with all kinds of natural alternatives.  I had reiki treatments, reflexology, changed my diet and incorporated supplements specifically geared to the brain. I added coconut oil to my diet and put essential oils on my head, feet and inhaling them. I fasted and juiced and drank tumeric smoothies everyday.  I practiced positive affirmations and read the book by Louise Hay ” You Can Heal Your Life”.  None of it cured me, but I do believe my efforts enabled me to keep working a physically demanding job and functioning in the day-to-day.

I also did a lot of research on hydrocephalus and the more I read and learned – the more frightened I became.  I prayed for a miracle and cure and couldn’t believe this had happened to me. Asking myself ” why me?”  and “what have I done to deserve this?”.  It was traumatic enough to be diagnosed with a brain tumor, lose my hearing and find the courage to commit to radiation treatments.  But, once I did, I mentally moved on with my life with an eye to the future.  Never dreamed in a million years that the worst wasn’t over.

Naturally, as time marched on my symptoms worsened.  I managed to continue working despite how I was feeling.   I would describe it to people as feeling like I wasn’t “of this planet”  or foggy-headed. My head felt too heavy for my neck and I realized that head position, when sitting down – had a big effect.  Looking down at my phone, or reading a book would cause me to feel very weird in my head and when I stood up invariably my legs would go weak.  So, I kept my head supported leaning against the chair, and propped my book or phone up on a few pillows to make it more level with my head – and this helped.  I also watched TV with my head supported too.

The motion of the car would bring a spell on the minute I got out.  I must have looked like I was drunk and stumbled into hedges and bushes on more than one occasion.  I was veering to the right when I walked. Sometimes, I’d get out of my car and make it into a store before a spell would come on and then I’d be clinging to the endcap display shelving, until the spell passed hoping nobody noticed!  It became a constant challenge trying to figure out what worked, what didn’t and how I could fight it and learn to live with it.

November 2017 after shunt surgery. I was expecting half my hair to be shaved so I was relieved to only have a small patch which I could easily hide

Eventually, the symptoms became harder to cope with and interfered with my life. My son got married in June and I was mortified when I fell in front of the whole wedding party.  I could no longer walk my dog on our usual 30-minute route and by August I could barely walk him 10 minutes.  My legs felt like I had magnets on them and my normal brisk pace became a slow-motion crawl.  I was also noticing that I had an “urgency” to go to the bathroom and on one walk I was horrified when I couldn’t hold my bowels long enough to get home. I’ve always had very vivid dreams but I was noticing that I couldn’t even remember dreaming anymore.

The more I researched and read about shunts malfunctioning, requiring revisions, and the risk of infections, the more upset and apprehensive I became. Some people would tell me it’s better not to know. But, my motto is forewarned is forearmed. Knowledge is power and I believe it’s better to be educated than to go into something blindly. Particularly, brain surgery!

I was concerned about President Trump getting rid of the Obamacare and worried that if I kept dragging my feet  (pun not intended) I wouldn’t have insurance anymore to cover the surgery.  So, on November 2nd, 2017 I reluctantly went to the hospital for a VP shunt.  I wish I could say, it was a breeze but it was the most traumatic surgery I’ve ever had in my life and what made it worse was that I awoke from the surgery extremely dizzy and have continued to be dizzy for the past 6 months.

I’ve been getting vestibular therapy for 5 weeks now but am also experiencing excruciating abdominal pains from the tubing.  So far, I’ve not been able to return to my hairdressing career of 32 years.

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