"The struggle of dealing with post-op side effects"

So just over 1 year ago in the Spring/ summer of 2019 I was admitted to a hospital in Derry then transferred days later to the Royal Victoria Hospital in Belfast where I had a huge life-changing news that I required 2 brain surgery's.

One for a vp shunt to treat hydrocephalus/papilloma & another to remove a 4.4cm tumour that had "mushroomed" out compressing on my brain stem. I was told this was an Acoustic Neuroma. This was all news to me, I had no idea I was living with these conditions.

My surgery for my VP shunt was 2 hours long and I was discharged home to Derry 2 days later feeling good (tired and sore) but this recovery went well.

However in the weeks to follow I underwent a 10-hour surgery for my AN removal and this is where my nightmare begins. The surgery in part was successful (as I didn't die on the operating table). The tumour was a near total excision (residual left).

Side effects with this surgery:

I'm now SSD as my hearing nerve was cut. I have issues with not being aware of where noises are coming from, hearing what people are saying - it's exhausting with the amount of concentration it requires.

Fatigue: One year later and most days I'm still floored I've never felt anything like this. I was told I would only be fatigued for 3 months! Well, how wrong this was.

Balance issues: For the most part my balance has slowly recovered. I was told pre-surgery that my brain had been compensating for my left side anyway, however, there are many days when my balance is way off causing issues.

Anxiety & panic attacks (worsening)

Depression (as a result of all this happening so suddenly and not processing it well and in Dec 2019, 6 months after surgery, it all got on top of me.

FACIAL PALSY GRADE 5! (With synkinesis developing)

Now here is my biggest struggle in my arduous journey causing me emotional and distressing mental health problems, losing my identity and sense of self. The person writing this right now just longs for her old beautiful fully functional face back. To some this might seem vain but I was a young woman at 29 years old who was confident, bubbly & outgoing. Who worked 2 jobs with great passion & enjoyment had the most beautiful smile and sparkle in her eyes.

Fast forward to June 2019 after the surgery, to hear that I had grade 5 facial palsy my world came crashing down. I can no longer look in the mirror and hate the person's face that now looks back at me.

I haven't been able to take a picture with my 2 beautiful daughters as I can't stand the look of my face, it causes me distress. I no longer socialise or see friends as my anxiety and insecurity prevents this because I have become so consumed daily with the worry of my face.

My smile isn't the same

My eyes aren't the same

My forehead on affected side doesn't work

I still can't chew on the affected side

I cant use a straw and when drinking from a cup it spills.

The pain and tightness it causes.

I spend 3/5 times a day applying heat and doing facial stretches & massage (10-15mins).

No eye closure/ blink (this has improved a good deal & my eye almost closes however I've a very dry eye and I use 4 drops every half-hour as well as eye gel and taping my eye at night for one year.

Lack of NHS support (post op)

My care post-op hasn't been the greatest in regards to facial nerve palsy & my recovery in general it was dismissed by my surgeon & ENT, they said it would have fully healed by 3 to 6 months and that I'd be back to work in 3 to 6 months! Well, that didn't happen either.

At my 6 month follow up I was handed a piece of paper with a contact and they told me I'd have to pay privately to treat my face and that was pretty much it no understanding or support!

6 whole months before anyone would treat my face and I've had to go private in order to do so. Which I get, the surgical team did their job in removing the tumour BUT I AM MORE THAN JUST A HOSPITAL NUMBER what I have been left to deal with post surgery has been nothing short of struggle. I considered myself a very strong minded person but with every set back I will bounce back its just taken me longer.

Which now leads me to the specialist speech therapy practice.

I pay privately & travel 2 Belfast to see a speech therapist in clinic in Dec 2019 Feb 2020 then we had a Skype call in April 2020 as Covid 19 took over.

This has been my only support in dealing with my face and I am forever grateful for the support and understanding, my therapist goes above their job role and has really been there for me in helping with my recovery and in my down days of which there are many.

I have been provided with facial exercises/stretches advise and guidance 🙏  I have made good recovery to my facial palsy however sykinesis developed and causes major issue to my eye/mouth.

I really feel a lot more support and understanding needs to be given to patients with facial palsy as its a very serious matter in terms of my recovery anyway given that its been a year and my nerves didn't recover.

I would like to say that my care pre-surgery and in the 11 days after my surgery spent both in Altnagelvin and in the Royal my care was outstanding. I am and will be forever indebted to the NHS for the wonderful care I received to nurses, doctors, consultants, surgeons, ward sisters, student nurses, cleaners, cooks, in ward physio, ophthalmology, and anyone who helped me during my time in both hospitals.

Its the lack of services in some of my follow up care that are lacking.

Thank you.