Regular Rehab Ends, A New Chapter in My Recovery Begins, A Sad Outcome (Part 12)

After seven months of regularly attending the rehabilitation unit, I had a review with the staff who were responsible for my rehab. They concluded that there was nothing else they could offer that I wasn’t already doing to improve my neurological deficits, I had reached the ceiling with regards to the therapy that they could provide. It was upsetting to think my time at rehab was ending, but I understood and accepted what they were saying. I had achieved so much and came so far in my recovery at rehab, but what I was doing there no longer challenged my brain or body.

They suggested that I explore courses that would target my neurological deficits. Christine, a support worker from rehab, took me to the North West Resource Centre which offered a variety of classes. We were introduced to a very helpful member of staff, Cathy Crompton, and once I explained to her why I was there and what my deficits were, she was able to suggest a selection of classes that would be ideal at focusing on, and hopefully improving those deficits. She suggested Tai Chi for my balance, coordination and mobility, I had been doing Tai Chi at rehab so I was delighted to be able to carry it on. She also thought that I should enrol in the quilting class as it could help with motor skills, dexterity and coordination. I told her I couldn’t sew at all, in fact if my work trousers lost their button I would go to the office and order a new pair instead of trying to mend them! However she talked me into enrolling in the next available class! Finally, she suggested a computer class as it might help with the neuro-fatigue and memory.

Once I knew I would have another avenue to go down to be able to continue working on my recovery, it helped ease the loss and sadness at leaving the rehab unit. The unit had played such a vital and major roll in my recovery journey, and I would always be grateful for the hard work and support that they had provided to get me to where I was in my recovery. On my last day they said that they would recall me in six weeks, so that they could monitor my progress and to see if I was adapting mentally and emotionally to this huge change. As sad as I was that this chapter of my journey had ended, I was also very happy because I saw it as a positive thing as it showed how far I had come, I was looking forward to the next chapter in my recovery!

I returned to rehab for my six week review and they were delighted with the progress I was making, and at the classes that I’d joined! They were happy to discharge me, but said they would like to recall me in six months, they don’t usually but they had grown fond of me and wanted to see my progress then! It was with a lump in my throat that I left rehab that day, but I was positive for the future.

I continued to go from strength to strength, the constant feeling in my head of imbalance and unsteadiness appeared to be lessening and there were times when I could walk without my stick! This was especially true at Tai Chi, I was managing to do most of the class without using my stick.

Sadly, when I returned to rehab six months later, they were alarmed and distraught at the deterioration that they saw in me. During those six months I had been put on Gabapentin for neuropathic pain, but within two weeks of being on the medication I had a sort of fit/funny turn when I was at the Resource Centre. I went into a daze and I lost control of my limbs, they were spasming and became extremely ataxic. I struggled to coordinate one foot in front of the other. It took three people to help me to someone’s car and get me back home. Thankfully Lindsay’s dad was there and he carried me into the house. He phoned his wife Lesley who came and phoned my doctor. He told me to stop taking the Gabapentin with immediate effect. He assured me that he didn’t think this fit was due to a reoccurence with the cyst, he explained that because the nerves in my brain stem are damaged, this would always cause malfunctions with the nerves causing them to misfire, which would cause miscommunication between brain, body, movement and normal functioning. And because Gabapentin targets the nerves to reduce the neurological pain, then this interference probably caused this funny turn, hence why he told me to stop taking it immediately. After this episode, my balance, coordination, motor skills, dexterity, speech, swallowing, cognitive awareness, fatigue amongst other aspects of my health, were significantly impacted and I experienced a huge deterioration in all areas. It was this deterioration that the rehab staff witnessed and were extremely concerned about. Even though I had been off the medication by this time for three weeks, there were no signs of me improving. The physiotherapist and nurse in charge were so concerned that they made an emergency appointment with the neurologist. He was concerned that there could be cysts along the spine so I was given an emergency full body MRI scan (until then I had only ever had a head MRI) which came back showing nothing. The neurologist suggested that I may of had an infection, he explained that any bug, infection or even tiredness would have a negative impact on my neurological deficits. He suggested that things would improve over time.

However, five months after stopping the Gabapentin, and two years since I’d had brain surgery, I had shown very little improvement when I went to see my neurosurgeon in Edinburgh. She concluded that the side effects from the gabapentin that I had suffered so severely from, were likely going to be permanent in my case. I was absolutely devastated. I had always said that, once I reached the two years (the figure they tell you that you will probably begin to plateau) if I still struggled with any neurological deficits and/or still needed to walk with a stick, then I would be okay with that because I would know that I had done everything I could, to become the best Elaine I could post surgery. But now that had all changed. I had reached the two year mark, and the deficits still impacted my day to day life, and I still needed to use a walking stick, but I had been on the verge of not needing it before I started on the medication, so I felt absolutely cheated. Sixteen months of gruelling therapy, hard work, determination and dedication had been wiped out within two weeks of being on Gabapentin. That appointment with the neurosurgeon was May 2017, and despite returning to rehab for further physiotherapy, to this day the level of recovery I had been at back in August 2016 before I started Gabapentin has never returned.