Guillain Barre Syndrome – my experiences.

By

David Russell

Page 3

I was placed on a bed in the Accident & Emergency ward. No sooner had I arrived than I was whisked off to have a CT scan. This involved me lying on my back with my head inserted into a kind of tunnel, whilst X-ray images were taken of my skull. It was a bit noisy but no real discomfort. I soon arrived back in my bed in the A & E ward.  Less than an hour later I was taken to have an MRI scan. This, I was informed would probably be a bit uncomfortable. It was! I was laid onto a narrow bed with a mattress on sliders. The sliders disappeared into a hole in the side of this big white piece of equipment. The hole seemed about 18 inches in diameter and did not look big enough for my shoulders. “I wasn’t claustrophobic was I?” Ear plugs were given to me and I was told to expect a little noise, Irish understatement again, and I must keep my head perfectly still all the time. The bed started to move and my head and shoulders slid into the hole. It was dark and the noise was loud, very loud. The sound was similar to a highly distorted guitar playing a a series of low notes very, very loudly, and it was in waves or pulses that merged together. The MRI scan seemed to last a lot longer and I was quite glad when it finished. I couldn’t help glancing at the computer monitor as I was being wheeled back to ward 5b.  I could see a cross section of my skull, in lots of colours, but it meant nothing to me of course. Fortunately it did mean a lot to Dr Sweeney. Both the CT and MRI scans were negative. That is, no lesions had been found that would have suggested a stroke. So the good news was that it did not look like I had had a stroke.

 On, to the next test.  This goes by the innocuous name of Nerve Conductivity Test or NCT for short (it could be renamed Nerve Conductivity Torture). I was wheeled down to a specialist in this technique, can’t remember his name. Dr Sweeney and a couple of his staff were also present. The NCT specialist proceeded to attach wires and clips from a nasty looking bit of equipment with a large dial with a single black pointer beside a big black knob with gradations marked on the fascia. When I had been suitably hooked up, the specialist then proceeded to place two electrodes at various points on my arm. I experienced a painful shock of electricity. A computer display showed a trace against time. This was repeated over several points on my arms and legs. Then physical measurements were made of various parts of my arms and legs and there seemed to be a lot of concurring among the doctors present.  I was then wheeled into Dr Sweeney’s consulting room again.

 “The good news is that your condition is not the result of a stroke.” He said. “The bad news is that we believe you have a very rare condition known as Guillain Barre Syndrome.”

“This condition affects the central nervous system. Further good news is that you have a very good chance of making a full recovery.”

“Further bad news is that it will get a lot worse before it starts getting better, and that it could take some time.”

This was a relief. it sounded positive and encouraging. It was also a bombshell. What was ‘some time’.

The really good news for me however, and this was not part of the consultation, is that Dr Sweeney is a leading authorities on Guillain Barre Syndrome, and I was very lucky that he was on my case.  I said earlier that I had felt a certain empathy between Dr Sweeney and myself. It was this, and the confidence that he had engendered, that prompted me to say to Ann,

“Don’t worry love. I will walk out of here”

“I know it will get worse, but I promise you I will walk out of here.”

I had no idea what I was going to experience before I fulfilled that prophecy. If I had, I might have been less positive.

I was transferred to the observation unit of Ward 5b later that evening. The observation ward was on the top floor of a modern looking building. I was in bed number 3. Ann was sitting by my side. I was on a drip and I can remember looking up and seeing the words ‘Immuno Globens’ on a drip bag. So, they had started the treatment. I seemed to remember Dr Sweeney had explained to me that one of the treatments for my condition was Immuno Globens.  My memory of the ensuing few hours from here is a bit vague. Apparently, with Ann sitting beside me, I started to have problems breathing.  I was rasping and having great difficulty trying to draw air into my lungs. Ann has since described it as the same noise her father made just before he died. Ann ran out into the corridor hysterically screaming for a nurse to come to my aid.  What had happened was that the muscles holding my throat open, so that I could breathe, were no longer being controlled by nerve impulses from my brain. They collapsed with the result that I was suffocating. I was rushed down to A&E and had a tube inserted down my throat. This would be how I breathed for the next three to four weeks. Unable to breathe for myself I was on a ventilator and moved to the Intensive Care Unit or ICU.  I was no longer in control. My life now depended on the skill and care of Cork University Hospital doctors and staff.