Deborah, 59

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 & 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 dreaming 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 in 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.

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

Change this in Theme Options
Change this in Theme Options