More tests

I realise that I need to bring you up to date. 

I went to see the different ENT at the end of October, and this was the first time I felt that I was talking to a medical person who knew anything about this condition.  I was in a room with the ENT, a physio, and various other nurses who between them all made up the balance clinic.  Unfortunately the ENT didn't have access to the reformatted version of my CT scan, but he later wrote me a letter saying that once he had seen it, it became clear that I "had quite a good example of superior semi-circular canal dehiscence". 

Another test he wanted to have done on me was a VEMP test.  VEMP stands for "vestibular evoked myogenic potential".  Which to the lay person means absolutely nothing!  I tried researching it, so that I knew what to expect and to try to understand the purpose of the test.  Unfortunately I was unable to make head nor tail of my findings.  I gleaned that it involves electrodes and a pulsating noise in your ear, but the whys and wherefores of it all remain a mystery. 

So the day came to go for my test.  It was explained to me that the vestibular system is a complex system, and trying to find out where it is going wrong is like trying to find a needle in the haystack.  VEMP testing combined with high resolution CT scan  is used as a diagnostic tool in diagnosing SCDS.  And even though I have had it done now, I still don't understand it, so all I can do is explain the process.

I was hooked up to some electrodes.  Two each side of my neck, placed on specific muscles.  I had further electrodes placed on the front of my neck, and my forehead.  The electrodes were tested, and retested, and then moved around, until after what seemed like forever, they were happy that they were set up correctly.  I then had to turn my head one way, to put my neck muscle under just the right amount of tension, which was determined by a traffic light type arrangement.  Red meant that it was contracted too much, blue was not enough, and green was just right.  They then, through and ear piece placed in my ear, sent a loud pulsating noise.  This made my eyes bounce all over the place, but I had to concentrate on keeping my neck in the correct position.  I had this repeated on the other side (which was much harder as  couldn't maintain the correct tension in my neck).  Then the test was repeated on each side again but at a lower sound level. 

I was expecting to feel particularly disorientated after all that, but I think the overwhelming feeling was one of tiredness, and a slightly sore neck!! 

The results of the test will be analysed over the next couple of weeks, and hopefully, when I get to see the consultant again in December, we will be able to formulate a plan of action to rid me of the symptoms of this condition. 

The journey so far

I have started on a journey.  A journey that I wouldn't choose to make.  A journey I wouldn't want anyone to make.  A journey into the condition of "superior semi-circular canal dehiscence"(SSCD).  That is my diagnosis.  But I am kind of jumping the gun a bit. 

Let me take you back to the beginning. 

It was around Christmas time 2014 that I realised that at bed time I could hear my heartbeat.  I didn't really think too much about it, until it became apparent that it wasn't usual to hear your heartbeat.  So I finally went to the doctors.  Bloods came back fine, ECG was fine,  hearing test showed a little low frequency loss.  By Easter I was feeling "off" I realised I could hear my eyeballs move, and was feeling out of sorts.  When I exerted myself or got stressed, my hearing of my heart beat became louder, and my vision pulsed in time to my heartbeat. 

A flippant comment on Facebook along the lines of  "ooh, I can hear my eyes move" led to a friend pointing me in the direction of a rare vestibular condition of "superior semi circular canal dehiscence".  I looked at the wikipaedia page about it, and low and behold there was a list of symptoms, of which I could tick off quite a few. 

I kept this "diagnosis" to myself, as I figured the doctors would know more.  But my visit to the doctor, in June,  proved fruitless, with him admitting he didn't know what was wrong with me.  He did however refer me to ENT, and gave me a prescription for prochlorperazine (which did nothing)

I got an appointment through for the end of August, which was frustrating to say the least, as my symptoms were progressively getting worse.  My tolerance for noise was getting less, I was hearing my footsteps like a drum, when I walked.  My balance was going awry, and I often felt as if I'd either drunk a bottle of wine, or was out at sea and everything was constantly moving, with the occasional wave coming along to really knock me off balance. 

Driving was becoming difficult.  Whilst I would never drive if I was feeling dizzy, I could never predict how I would be feeling by the time it came to the return journey, so I took the hard decision, just as the summer holidays approached to give up driving. 

In my frustration at nothing happening (I'm not a very patient patient!) I got back in touch with the GP (a different one as the previous one had moved on) who referred me for an MRI scan whilst waiting for this ENT appointment to come through, and changed my prescription to Betahistine (which still did nothing).

By this time I am experiencing vertigo attacks which feel like I am being pushed.  The children liken it to Keanu Reeves' character in the Matrix films, where he bends backwards in slow motion.  I realise one morning when walking our dog, and having to hold onto his back to stop me falling over, that I need to use a stick.  I borrow my father in law's spare stick for a while, taking it out when I feel wobbly. 

An MRI scan was undertaken (with my eyes firmly shut!) and fortunately showed nothing.  What they would have been looking for would have been a tumour, so I am very grateful that it came back clear.

Finally, the end of August came around, and I saw the ENT consultant.  I explained everything that I was experiencing.  I had a few tests, and he told me that he didn't think it was anything to do with my ears!  I explained that I had come across this condition of SSCD, and that I felt that it fitted with my experiences, more so than any other vestibular disorder I had come across (the VEDA page is a fantastic resource for understanding vestibular problems).  I explained that I would like a high resolution CT scan to at least rule out this condition.  He did at least agree to that, even though he felt that it couldn't possibly be that as he hadn't come across a case of that in 20 years of practice.

Early September I went for my CT scan, and was anxious to find out the results.  But, as you know, the wheels of medical bureaucracy turn incredibly slow for non urgent cases.  I managed to get a cancellation appointment for the second week of October.  In the meantime, I had another appointment come through, and whilst I was trying to work out why this was, it became apparent that I should have received a letter.  A copy of the letter was sent to me. 

The letter confirmed I had a left sided dehiscence of the semi circular canal.  This brings me to the present day.  I am awaiting to see a different ENT consultant to see where we go from here.