Our Members - Their Stories

MDANZ members share their personal stories of living with a Muscular Dystrophy condition. 

Life-changing throat surgery a turning point

14 November 2021
Anonymous

My name is Mary Fargher, and I am 74 years old. I was diagnosed with inclusion body myositis (IBM) in 2016 following an MRI, nerve conduction tests, and then a muscle biopsy taken from my upper arm.

Inclusion body myositis is an inflammatory muscle disease characterised by chronic inflammation with slowly progressive weakness of both the distal and proximal muscles. It is most apparent in the muscles of the wrist, fingers and thighs.

Prior to my diagnosis I had experienced weakening of my arms and thighs for a period of three to four years and was prone to falling, tripping and it was increasingly difficult to get up off chairs or the floor.

I had been attending a pilates class at a local physiotherapy clinic, and although the instructor (a physiotherapist) gave me extra exercises to do, it did not help. She was concerned enough to consult with my GP who then referred me to Dr Desiree Fernandez, a consultant neurologist.

I am now unable to walk very far without a walking stick and have a mobility scooter. I purchased one that can be dismantled to fit into the boot of a car which is great for going further afield than just around the block.

My left hand and arm are very weak, and I am unable to carry anything of any weight. Having been an active gardener and quilter in the past this has impacted my life considerably. Over the last five years I have also developed dysphagia (difficulty swallowing).

Swallowing became increasingly difficult with constant choking and coughing on solid food as well as drinks.  This resulted in me having to cut back on socialising and eating out and having to resort to a diet of soft puréed food.

Following a referral from a Nelson ENT surgeon to Mr Robert Allison at Christchurch Hospital, I underwent a pharyngoscopy and cricopharygeal myotomy in November 2020. This operation involves the surgical sectioning of the upper esophageal sphincter. Dysphagia stops the esophageal sphincter from relaxing to allow food to enter the esophagus or it relaxes in an uncoordinated manner.

The difficulties with eating combined with my mobility were having a major impact on my life.

The throat surgery was a huge turning point for me and within two to three weeks I was able to return to an almost normal diet again. I have a very unobtrusive scar in the folds of my neck which does not cause me any issues.

I was in hospital for two nights and although a bit uncomfortable for a few days it was nothing compared to the life-changing effect it has had for me.

My social life has returned, and I can eat out and enjoy a good coffee again without continually worrying about choking on anything and everything.

The surgery didn’t create very much anxiety for me as I was desperate to try anything which might help.  Due to the Covid-19 lockdown I had to wait 10 months for the surgery, so I had a lot of time to think about it.

A biopsy taken from the muscle in my throat confirmed that it was the IBM that had caused the eating difficulties that I had been experiencing.

If I have these issues again, I have been advised that there is every likelihood that I could have a repeat procedure.

I became a member of MDANZ in 2016, just after my IBM diagnosis and have found the Fieldworkers, the In Touch magazine, and regular emails, particularly in regard to Covid issues, informative and reassuring.