The ‘Other’ Diagnosis

Those first few weeks were a mix of doing whatever I could do work on my balance, and sleeping.

I was still very much reliant on others, as I my vision wasn’t recovered enough to drive, and mum was still coming round to help with housework and cooking.

It was about 3 weeks after my surgery when I was called by the respiratory consultant at my local hospital in Chester. He wanted to check where I was… I kind of got the feeling he actually wanted to check I was still alive. He made an appointment for me to attend, to discuss once again my scan results, and ruling out anything untoward.

With everything else going on, I had pushed all thoughts of this to the back of my mind. The thought of having another battle on my hands didn’t appeal one little bit.

At our meeting with the consultant, we looked over the x-ray and CT images of my lungs, and an urgent appointment was made for me to attend for an “EBUS”, or endoscopic bronchial ultrasound procedure. It would be performed under local anaesthetic. I admit, I had my reservations.

X-ray image showing “hilar prominence”.

I arrived at the hospital a couple of days later. I was shown to a waiting room full of other people undergoing similar procedures and one by one we were taken to a side room to have a cannula inserted and our obs checked, and then sent back to wait our turn.

Eventually, I was called through to a room that looked a little like an operating theatre, but more like a dental surgery.

The procedure was explained to me again as I lay down, once again surrounded by medical staff.

I was connected up to various monitors as the consultant sprayed the back of my throat with local anaesthetic.

Within moments I began to feel the effects of this; I told the doc that I couldn’t swallow, and he tried to reassure me that this was perfectly normal, that I was in fact swallowing, just unable to feel it.

He then placed what I can only describe as I gag in my mouth, so it was held open and I was unable to speak. I was also given an injection, through the front of my neck, into my throat. This was not pleasant at all, and it was only at this point that I was given sedative.

The two consultants then began to insert the various pieces of equipment into my windpipe, and into my lungs.

Image of an EBUS procedure taking place.

At this point I had this involuntary urge to cough like I had never coughed before. My lungs clearly didn’t like being poked about…

I really struggled to lay flat as I was coughing so violently, and so I had 3 nurses holding me still as the doctors struggled to take biopsies. Once again, I worried about the pressure this would put in my head, and again the high risk of CSF leak.

I could hear the pulse metre picking up its pace, and then my blood pressure followed suit. I was still feeling no effects from the sedative, and I heard the doctor telling the nurse to give me another shot. I waited to drift into a deep sleep, but nothing…

I felt as though I was drowning. It seemed like an eternity until they got the samples they needed and pulled the equipment out of my protesting lungs.

I can only describe this as the most barbaric experience I’ve ever been through. My craniotomy, by comparison, was a walk in the park.

It was a week later before I received my results. I was told that the biopsies had shown that the lymphadenopathy in my lungs was in fact caused by Sarcoidosis. I informed the doctor that should I ever need that procedure again, it would only be under general anaesthesia.

Sarcoidosis is a disease characterized by the growth of tiny collections of inflammatory cells (granulomas) in any part of your body — most commonly the lungs and lymph nodes. But it can also affect the eyes, skin, heart and other organs.

The cause of sarcoidosis is unknown, but experts think it results from the body’s immune system responding to an unknown substance. Some research suggests that infectious agents, chemicals, dust and a potential abnormal reaction to the body’s own proteins (self-proteins) could be responsible for the formation of granulomas in people who are genetically predisposed.

There is no cure for sarcoidosis, but most people do very well with no treatment or only modest treatment. In some cases, sarcoidosis goes away on its own. However, sarcoidosis may last for years and may cause organ damage.

Doctors don’t know the exact cause of sarcoidosis. Some people appear to have a genetic predisposition to develop the disease, which may be triggered by bacteria, viruses, dust or chemicals.

This triggers an overreaction of your immune system, and immune cells begin to collect in a pattern of inflammation called granulomas. As granulomas build up in an organ, the function of that organ can be affected.

Thankfully, it was felt that as I didn’t seem to be suffering any physical effects of the sarcoidosis, apart from the joint pain and rashes that had been some of the first symptoms of my demise into this mess (and which had since cleared up), I wouldn’t be given any treatment, and it would hopefully just run its course.

I will fight another day, but each morning I wake knowing that someone, somewhere will be receiving quite different test results.

Have I been lucky? Fortunate even? Each time I hear of a case of someone being diagnosed with a cancerous brain tumour, or other life-threatening condition, I feel physically pained.

Whilst my tumour was low grade, I know what it is to live with that intruder. I know what the effects of it are. I know how life-changing going through a craniotomy can be, the fatigue, the sickness, the weightloss, the having to relearn so much, the being reliant on others, the mental battle that rages in your head every single day.

It’s no joke. Mostly, I feel an overbearing guilt that I have survived that which will beat others, and I wish I could take that pain away from them.

I’m currently working on my next writing project, How We Rise, but I need your support. You can find out more here.

Published by Sara C

It's hugely important to raise more awareness of brain tumours and the implications they can have on patients' lives. I aim to help to create wider understanding of the effects brain surgery and a diagnosis can have on an individual and their families on a emotive level through my own experience.

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