The best news

Well, after less than 3 weeks of waiting, got back from a few days away to find a letter from my neurologist. My neuroma has not grown and I am now on 2 yearly scans. Can’t sum up the right words to express my relief. It’s the best news ever. I know this thing won’t go of its own accord, but for now it’s keeping a low profile and for that I am really grateful. 😃🤞

That time of year again.

So a whole year has gone by and for some periods I had totally forgotten about my unwanted lodger. That was, until a letter arrived with a date for my next scan. Scanxiety has reared it’s ugly head again. Will I ever get used to this??

My tinnitus and hearing have got a lot worse, bizarrely making the sound of a too loud tele quite unpleasant. Was fitted with a hearing aid to help with the tinnitus, apparently being able to concentrate on more sounds gives the brain something else to think about it. They were right but unfortunately it’s quite uncomfortable to wear, made worse because of my glasses getting in the way and leaves my outer ear quite sore. Not sure what’s worse, tinnitus or sore ear? Time will tell.

Tomorrow will be unpleasant, 40 minutes of hell. Followed by 6 weeks or more of waiting……

Scanxiety+1

Well, 8 weeks after my scan, I’m still waiting for results.  Chased the consultants secretary but could only leave a message. She called me back 5 days later and left me a message. Basically said that consultant had tried to call me last week, though I definitely had no missed calls. Apparently he doesn’t leave messages about results and so has written me a letter. Not sure if the letter is going via another continent, but 6 days after his alleged call, I still am none the wiser. Even if he couldn’t leave a message with results, which I totally get, what’s wrong with a message saying I tried to call you and I’ll write instead?  Does he have any idea of the anguish I go through? You’d think he would as this kind of brain tumour is his specialty.

So, more waiting. This gorgeous weather proving a nice distraction though, let’s hope it stays and stays and stays, I’m not winter’s biggest fan I must admit. Bell ringing tonight, another lovely distraction

Will write more when and if this elusive letter arrives.

Scanxiety

 

After diagnosis I joined a support group, BANA (British Acoustic Neuroma Association).  They have a Facebook group which I read with interest.  Probably not the best option as reading phrases such as Gamma Knife and facial palsy totally scared me.

I now have constant tinnitus, usually a low pitched ringing, sometime a whooshing sound but always something, 24 hours a day.    Every time I bump in to something or miss my footing I worry that this is the start of the imbalance that will inevitably follow when the tumour gets bigger.  I try to stay positive and not to worry but it always seem to be there lurking in the back of my mind.  Writing this is certainly helping.

So, after 3 months of waiting, in July I had my “contrast dye” scan.  Again, 20 mins in the tube and then I was partially pulled out just long enough to have a needle put in my arm and some radioactive dye injected.  This gave me something else to think about for the last part of the scan, like how hot and sick it made me feel!  Still, no pain, no gain.

Radiologist told me that results only took 7 to 10 days which was good timing as it would mean results  just before we left for 2 weeks abroad to welcome our newest grandson into the world.  6 weeks later, still no results so I left a message for the consultant’s secretary to chase.  She called back and told me that he had just returned from 3 weeks holiday.  He had been given the results but now wanted to discuss them to the monthly multi discipline team meeting before calling me on Thursday.   My husband tells me that its probably standard practice that all results have to be consulted on by the team before being delivered to the patient and I’m sure he’s right.  Hopefully.  Fingers crossed.

I recently learned a new word from the BANA facebook group:  SCANXIETY.  Today, the day before I get the call from the consultant it totally sums up how I’m feeling.

Brave face on and fingers crossed.

The Day My Life Changed

How did I get to this point?

I have had a colourful and varied medical history over the years, in fact if I was ever on Mastermind, my specialist subject would be rare conditions.   Having beaten Cushing’s Disease and the resultant Addison’s Disease that followed, I really thought the my share of rare conditions was over and was looking forward to retirement being relatively healthy.

I am using this platform as a self help therapy and a place to put down my feelings, thoughts and emotions.  I’m hoping it well help me as a I go along this new medical journey and in the process, if it helps one other person, then this is a bonus.

I had noticed increasing deafness in my left ear and having recently had a sight test and noticed that Specsavers also do hearing tests, I asked if I could book one.  Apparently it has to come as a request from your GP.  I was worried about wasting my GP’s time with something so trivial, so I waited until I had another reason to go some weeks later and mentioned it as an afterthought.  He looked in my ears and could see no obvious signs and said that I would need to go to my local hospital for a hearing test.  When I asked why not Specsavers, he told me that guidelines say that a hospital test was needed when its single sided hearing loss.

I immediately thought that this would all be a waste of time, it was probable due to getting old, (I’m turning 60 next birthday), but went anyway,  The tests showed significant hearing loss in just the left ear, but good news, I had almost perfect hearing in the right ear.  All good then?

No, apparently.  I was then told that I would need an MRI.  All this for a bit of hearing loss?  Bit of a hammer to crack a walnut, I thought.

MRI day came, March 2018, and it was snowing heavily. Living in rural Cornwall and looking at the snow building up on the road, I decided to call and cancel, I really was convinced it was not really necessary.  My apt was at 6.30 on a Saturday night.  Impressive that the NHS was now offering hours to suit everyone.  By 4pm the roads had cleared and as luck would have it, my slot was still open.  So off I went.

Anyone who has ever had an MRI will know that it really is not a very nice experience.  Strapped to a table with your head in a mould preventing any chance of movement is not pleasant.  You are then given a panic button!  Why is that needed?  Your mind  and your heart racing at this point.  A button is pressed and your table moves into a huge tube, you can’t move your head so all you can do it look above.  Or close your eyes, my preferred method.  Next follows 20 minutes of continuous very loud noises as the enormous magnet revolves at speed around your head.  After 20 minutes the noise stops and a faraway voice checks that you’re ok before they start the next 20 minute session.

I then totally forgot the experience for a few weeks, not bothering to chase the results as I couldn’t see the point.  After a weekend away I came home to 2 letters on the doorstep, both from the hospital.  The first one told me that I would need to go for another scan and the second was an appointment to see a Neurosurgen, in just 4 days time.  Where’s the panic button now I need it?  My husband, ever the voice of reason, suggested that maybe the first one wasn’t clear enough, hence the request for a second one. And maybe a last minute cancellation was responsible for my quick apt.  All very plausible.

I called the consultant’s secretary the next day to suggest that maybe the apt would be more useful once I had the second scan but she replied that he wished to see me and to come at the appointed time.

The consultant was very nice, very patient,  he had a copy of the scan on the screen.  He proceeded to show me the right side of my brain which he said all looked fine.  Phew, I thought, see it was all a huge waste of time.   Then the killer blow.

A tumour on my acoustic nerve called an Acoustic Neuroma or Vestibular Schwannoma.  He described it as a collection of cells that form on the acoustic nerve and they present with various symptoms such as deafness, tinnitus, imbalance to name a few.  He also said that it was almost certainly benign but that did not mean that it was not serious as it is very close to my brain.

There are 3 courses of treatment.  1. Watch and wait.  Which does what it says on the tin. Regular scans are done to monitor its growth.  2. Radiotherapy and 3.  Surgery.  He explained the real meaning of all 3 but to be honest I didn’t take it onboard, hearing mainly the phrases such as permanent deafness, facial palsy (very scary).

He also explained that he was part of a multi discipline team and that they meet once a month to discuss new patients.  Apparently my case was discussed at length.  I had no idea that I was being discussed by a room full of people.  The general opinion of them all was that my tumour was small so watch and wait was the treatment recommended.

For now…….

I feel scared, confused, angry.  But most of all scared.  Angry that this should happen just as my husband is about to retire.  Confused as to why this should happen to me.  But mostly just scared.