Thursday 3 December 2020

Just get it out

An update, my war and peace so far.

For the last 6 months I've been keeping myself busy with all kinds of things. Many people say that arts and crafts are therapy and this is so true. Talking to family and friends is also of the most importance to keeping your sanity intact. So many are struggling with their physical and mental health due to the Covid Pandemic. I think everyone knows someone who has either lost their life or has been effected by this virus. On the horizon is a vaccine that hopefully will kick start the normality of life.

After 4 months of phone calls to the doctors surgery I was added to waiting lists at the hospital and as we had come out of the first lockdown I was hopeful that I would speak to someone with more knowledge of Bells Palsy. At 4 and a half months I started video calls with a fantastic physiotherapist who was the first person who had experience of Bells and has been a fantastic support. At this point I still had no movement or recovery. She gave me a series of stretches to do with massage to re-align my face which pulled to the left side. Eye exercises to encourage my eye to close.

In between all that was going on with me, we had to make the very difficult decision to say goodbye to our fur baby and send him over rainbow bridge. He has left an enormous hole in our life.

 A week later things started to change for me. I was achieving more movement in my eye and my right cheek started to lift. Along with the cheek lifting my right eye started to close when I puckered my lips. This was the beginning of Synkenesis which was what I hadn't wanted to happen. The next physio appointment we focussed on trying to minimalize the amount of movement in my cheek causing my eye to close. 


At 5 months I was still having difficulty with facial functions so made another phone call to the doctors and finally they agreed to send an urgent letter to our hospitals ENT department rather than a letter of advice which is what the previous letters were. 


Yesterday, I spoke to a Consultant at the hospital who asked me to explain the time line of my Bells Palsy. I tried my best to keep it brief and only to the important events. He was really clear and questioned things that I told him. He is requesting an MRI scan and hearing test as the information I gave him doesn't sit with Bells Palsy and more to me having Ramsay Hunt Syndrome. This is the point I sit crying as I asked at the second week of this journey for a blood test to see if I had Ramsay Hunt and was told it wasn't necessary. I'm hopeful that the appointments come through quickly and can get some answers as to what has gone on. 

The recovery from RH is not as successful as with Bells, think I knew at 3 months my recovery wasn't going to be the best. I'm not an expert but have done so much reading and have the understanding, the longer it takes the less back to full facial functioning I'll get. I still have no taste, no automatic eye closing, headaches, no forehead/eyebrow movement, ear pain, tinnitus, lifted top lip, no sensation in my bottom lip, can't seal my lips make eating and drinking challenging. 

Over the next few weeks I hope I have a clearer picture of what is going on. I have been ensured by my physio and the consultant that there is still hope for improvement so it's not all doom and gloom.

Staying positive

Debbie xx

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