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 & 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.
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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