It’s hard to believe that this month marks two years of being ill. I find it even harder to believe that before my symptoms started, I was completely fine! The few weeks and days before I was living a busy life; going out with my Uni friends, working long shifts on my nursing placement, swimming, cycling, writing essays…the list goes on! With SSCD, you are usually born with the predisposition to developing the condition. There is often a ‘second event’ which eventually triggers off the symptoms. I guess I could have got to the age of 50 without actually experiencing any symptoms.
I spent last week in Cambridge (one of MANY trips over the past year). This was one of the most exhausting trips yet. Both physically and mentally! I saw a Neurologist on Tuesday who was no help to me at all. Sadly some doctors just do not understand SSCD and he was one of them. His written report not only has my medical information completely wrong, but he refers to me as a ‘Mrs’ – probably another person who thinks my Dad is my husband which is incredibly embarrassing! So that was a waste of time.
On Thursday I decided that getting my hair done was a good idea …. Oh what a challenge! Because to be honest, you don’t realise how hard something like this is until your ill. It took a long and painful 45 mins to get my hair covered in dye and foil while I used all my energy chatting to the hair dresser (what I would have done for one that just couldn’t communicate…), I then realised I would have to let the dye ‘cook’ for another 45 mins! This sounds like nothing, but when your sensitive to sound, hair dryer noises become completely intolerable as it sends dizzy waves through my head. I moved myself to a sofa and put in my ear plugs to desperately try and block out the unbearable sounds. Then it was hair wash time, which is suppose to be relaxing isn’t it? (definitely not!)
Once I’d put up with having my hair half dried I was finally ready to go. Not really caring what my hair looked liked and more interested in getting back to bed. In conclusion, there will be No more hair salon trips until I am better!
Friday I saw my ENT surgeon. He wants to do another SSCD surgery but this time to ‘plug’ my canal. This would be carried out in the same way as my previous op (‘blindly’), so how does he know the repair is in the correct place? Well, i asked him this and he explained his technique (going through the mastoid behind the ear). Without the area being directly visualised he will not know for sure if it is all covered. This is the downside to this approach and according to research is only suitable for some patients. In the States, surgical technique is more likely to be decided case by case and based on individual differences such as anatomy (ie. based on where exactly the hole is).
This second operation to ‘plug’ the canal is also permanent and stops the function of the canal, so if this fails, it can’t be reversed. So now I have some big thinking to do… Do I let my UK surgeon try the surgery again in the hope that it works this time? Or do I go to the U.S and get an opinion from one of the top SSCD specialists in the world. When I put it like this…. The answer seems obvious, but there are so many things to think about.
Link below is a video explaining SSCD and it’s treatment by another top surgeon in the States. Check it out if your interested!