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

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.

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Miss Independent, Kidnapped and Homeward Bound (part 8 of I’m a 40-year-old blogger virgin!)

Miss Independent, Kidnapped and Homeward Bound (part 8 of I’m a 40-year-old blogger virgin!)

As we were leaving Edinburgh the ambulance had to pull over to let me lie down on the stretcher, I’d insisted that I wanted to sit on a chair for the journey – against the advice of the staff – but after only a few miles I had to admit defeat as I was getting sore and tiring trying to remain seated!  Then for the rest of the journey I slept!  I woke up as we were entering Dumfries and the familiar sights around me were overwhelming, I wanted to cry in relief at being closer to home.  As I was wheeled through the front doors of Dumfries & Galloway Royal Infirmary (DGRI) the first person I saw was Emma, a good friend of mine, and the tears came!

My bed wasn’t ready when I got on the ward so I waited in the relative’s room and a colleague surprised me by rushing up to visit me as soon as she heard I was back on home soil!  It was great to hear all the news of work, I’d thought of work often and missed it.

I was finally given a bed in a single room with en suite facilities!   When I was in Edinburgh I was only allowed to mobilise with the assistance of a nurse or carer and with the help of Mavis (my walking aid – she was introduced in part 7!) but when I got to DGRI I told them I would be okay going to the bathroom on my own as, unlike Edinburgh, it was in the same room, so I blagged my way to become Little Miss Independent!

I had thought my days of loss of dignity had passed, but sadly not!  Because I had been transferred from another hospital they had to take a swab to check for MRSA.  That doesn’t sound too bad – until I learned the swab would be from my bottom and would be done by a young student nurse, time to cringe and die inside again!

Later that day a support worker gave me a menu for dinner and I noticed it had more appetizing meals on it than Edinburgh, in Edinburgh my menu differed from my roommates and I only ever saw soft options, so I was getting excited about having ‘proper’ food – until this woman breezed in to my room, took the menu out of my hand and highlighted the limited food I was allowed to choose from, and it didn’t include any of the appetizing food that had originally caught my eye!  ‘This woman’ turned out to be the speech therapist, and although I had talked my way in to being able to mobilise on my own I wasn’t going to argue with her when it came to my swallowing, the fear of choking again was still a huge concern of mine.

17 days after surgery I discovered something strange…I couldn’t blow my nose!  I’m not too sure why, but it was quite bizarre!  Each time I tried the only thing that happened was air would escape from my mouth.  When Lindsay came to visit me that evening I told her about it and I proceeded to demonstrate how I couldn’t blow my nose and how, instead, the air just blew out of my mouth…only on this occasion the air escaped from my bottom instead!  Lindsay was highly amused and still laughs about it today, thankfully nobody else witnessed it!

The ward I was on was a mixed ward, one side was acute rehabilitation and the other side was care of the elderly.  On my first night I felt like I’d been transported back to work (I work in a dementia unit), this wee old lady with dementia was running the nurses ragged, escaping out of the fire exit several times!  She was sharp-tongued, slap happy and very wily!  It made for an interesting night, I was use to the silence of the neurosurgical ward at Edinburgh! It made me want to put my work hat on and help!

On the second night I had quite a few visitors, it was a great pick me up to have the support and love of my friends.  Also on the second night, the wee old lady got up to her antics again!  And so the following day the nurses asked if I wouldn’t mind changing beds with the old lady as they felt they would be able to keep a better eye on her as the single room I was in was opposite the nurses station!  So I found myself sharing a room with three ladies with dementia.  This really put me in to work mode and I found myself pressing my buzzer a lot whenever I felt the ladies needed assistance but were unable to buzz themselves.

I was getting bored and restless so I tried to persuade Lindsay – for the second time – to bring my Open University study material!  I had originally asked her to bring it to me when I was still in Edinburgh, what I thought I was going to do with it I don’t know…I could barely see faces never mind try to read!  And I tired after a thirty minute visit so how I thought I would have the energy to concentrate and take any of it in!  Sensibly, Lindsay put her foot down and refused to bring it to me!

On the Saturday – my 20th day in hospital – Lindsay kidnapped me!  She’d brought along our dog Dexter, I was so excited to see him but sadly I couldn’t compete for his attention with the rabbits that were on the hospital grounds!  We took a drive to the riverside (about two miles away from the hospital) and I toddled along a short path to the river and sat on a bench – in my pyjamas I should add! – and watched Lindsay throw sticks in the river for Dexter.  I was overcome with emotion as I watched them, it seemed so long ago since we’d been together as a family.   That night as I lay in bed reflecting on the day and on the journey I’d been on over the last couple of weeks I got tearful and I just wanted to return home now.

On the Sunday I told Lindsay to take a day off from visiting me and get herself to the pub!  Except for three days in Edinburgh, she had visited me every day  (one day she wasn’t well and the other two days I was waiting to be transferred, they fell through but it was too late for her to travel up), so she needed and deserved a day off to relax and recharge her batteries.  I wasn’t alone though, Lesley and Dot came to visit me.  Dot asked me if there was a chance I would be out for Thursday, as it was her award ceremony at work for her long service.  I told her if I was still in I would get Lindsay to kidnap me again as I didn’t want to miss it!

As it turned out I didn’t need kidnapped because on the Monday – three weeks to the day since my operation – I finally received the news I’d been longing for, I was able to go home that afternoon!  After Lindsay had settled me on the sofa at home she went to collect Dexter from her parents.  I’ve two things to tell you about Dexter, firstly, it’s customary for Dexter to jump all over you and make a fuss if you’ve only been away from him for twenty minutes doing some shopping!  And secondly, he never climbed up onto the sofa.  However, as he came round the side of the sofa and saw me sat there, he very gently climbed up beside me on the sofa and gently lay his head against my chest.  It’s as if he instinctively knew that mummy was poorly and he had to be gentle.  It brought a tear to my eye as I sat at home with my family either side of me.

Small World, Big Milestones and Goodbye Edinburgh! (part 7 of I’m a 40-year-old blogger virgin…!)

Small World, Big Milestones and Goodbye Edinburgh! (part 7 of I’m a 40-year-old blogger virgin…!)

As I was wheeled in to a ‘normal’ room from the high dependency unit I heard a familiar voice, one that I never imagined I would hear again, and if I’m honest, not one that I particularly wanted to hear again! My first reaction was I must be hallucinating again! But after the initial few minutes of hearing her voice turned into hours, I came to the conclusion that, I unfortunately wasn’t hallucinating it! I’m going to call this person ‘Ms S’, she was a former resident at my place of work, and at that time, she had a very challenging and demanding personality, and this continued to be the case here in Edinburgh! I couldn’t believe my misfortune at having her as a neighbour, all I wanted/needed was peace and quiet to recover, and all I got was a buzzer happy, chronic complainer in the bed next to me!

It turned out to be the ward of small worlds as the woman in the bed opposite me (who I’d never met before) knew my partner, my best friend and was a cousin of my ex mother-in-law!

On the Monday (one-week post-surgery) the physiotherapists who had visited me on Friday returned. At their last visit they had helped me to stand (not very successfully!), today they wanted me to try take a few steps. As they helped me to my feet I was unsteady, but I was determined to take a step. With the physiotherapists either side of me holding my arms, I managed to walk from my bed to the ward door (about fifteen feet) and back!

Also on Monday I was visited by my best friend Jill, we have been friends for 25 years, and despite all the pain and trauma of the last week, I turned into an immature giggling school kid – as is the usual when we are in one another’s company! I think the immaturity and giggles started the moment I told her that she had sat on my ‘pee bag’!  It was great to see her and it really lifted my spirits.

Tuesday proved to be an eventful day! The speech therapist was pleased with the progress of my swallowing, she had been visiting every day trying me with different food and drink consistencies, and although I still had a feeding tube in, she decided I was ready to try puréed food. Now maybe most people would get excited at the thought of a meal after eight days of being fed through a feeding tube, but, some residents at my work are on puréed meals, and trust me when I tell you they are anything but appetizing!  So although it was a milestone, my stomach wasn’t celebrating at the thought!  Here’s a photo of that first meal. This picture was me finished with the dish, I couldn’t force feed myself anymore of it…and that wasn’t because I was having trouble with swallowing, I just couldn’t stomach it!  Another lesson learned for when I return to work to those residents who have to eat this every day!  And in case anyone was wondering what it was, it was corned beef hash!

pureed meal

 

Another milestone from that Tuesday was I had the catheter taken out! (Otherwise known to my friend Jill as a pee bag!) Once the catheter was out I had my first trip to the bathroom where I got to look at myself in the mirror for the first time.  But I couldn’t see myself, my vision was too blurred all I could see was the outline of my face but not any detail, it was a bit unnerving and made me worry that I might be left like that.  I raised my concern with staff and an appointment was made for me at the eye clinic.

 

And the final milestone for that day was I had my stitches taken out!  If you’re squeamish you might want to quickly scroll past the next picture!  But for those who aren’t faint-hearted, I decided to include a photo of my wound just after the stitches had been taken out!

photo 1 [2736]

 

When the consultant and his team did their rounds on the Wednesday they were really pleased with my progress and were talking about the possibility of me going home.  I was so excited at the thought of being back home with my partner Lindsay and our dog Dexter!  I told the speech therapist and physiotherapist the good news. Unfortunately, they didn’t share my enthusiasm, the speech therapist was concerned that I still had the feeding tube in and she had arranged for me to have a videofluoroscopy swallow assessment (a video x-ray of my swallow).  The physiotherapists were also concerned as I was still unable to walk without their assistance and they felt there was still much more to be done before going home could be considered. They said that they wanted to give me the best start at the beginning of my recovery so that I can become the best I can in my long-term recovery.  They went to talk it over with the consultant and, as a result, going home was put on hold.  At the time, I felt absolutely deflated and if I’m honest I was angry at them for over-ruling the consultants decision.  When I look back on it, knowing what I know now about the early days of recovery being crucial, I am grateful for their care and concern and completely respect what they did.

 

Thursday proved to be a busy day! Firstly, I was taken to the physio gym for the first time!  Only to be told all I would be doing would be standing in front of the plinth and stacking plastic cups on top of each other at different distances on the plinth.  I was hoping to go on a treadmill or something to improve my walking! (Again, with hindsight, I now realise the ridiculousness of my expectations!).  So with a slightly petted lip I set about building a plastic cup tower, only to discover that if I bent too far to try to reach the plastic cups (which had been moved out of easy reach) I toppled over.  And that was the point of the exercise, it wasn’t a simple case of practice walking and I’d be okay, my entire ability to balance was off.  Another point to the exercise was to test my coordination, and as I reached for the cups I would miss picking them up, my arm would either over/under-shoot the cup or go to the left or right of it, it took a lot of concentration to coordinate my movements.  At the time I had no understanding of why this would be affecting my walking.  If it was explained to me then I don’t remember, or maybe I didn’t comprehend what I was being told. I now have a better understanding of how, in order to be able to walk, your body continually needs to balance itself and coordinate limb movements.

 

After physio I had the appointment at the eye clinic.  The appointment was in the out-patient clinic on the ground floor, I was taken down in a chair and left, I felt very self-conscious sitting in front of the general public in my pyjamas and fetching white support socks!  The ophthalmologist told me the nerves had been damaged as a result of the pressure of my lying face down for so long during surgery.  The damage was quite severe and I was told it was an unknown whether it would improve, or if it did improve, by how much.  It was a wait and see situation.  In the mean time I was given a black eye patch so as the double vision wouldn’t affect my efforts to walk.

 

In the afternoon I had an appointment at the speech and language department for the video x-ray assessment of my swallow. Just before I went to it, I had been trying to adjust my feeding tube myself as it had been knocked during the eye tests.  I somehow managed to nearly pull it out!  The nurse had to take it out and I begged him to leave it out!  He said he would leave it out until I returned from my appointment, but because I wasn’t managing to eat the puréed food he would need to insert it again.  I explained to the speech therapist what had happened and she said that I was able to leave it out on the condition that I ate and drank enough and she would monitor my food chart.

 

During the assessment I was asked to drink barium liquid, I’m a fussy eater so it takes me some time to pick up the courage to taste anything new, so I asked if I could dip my finger in it first, as I couldn’t just take a sip without knowing what it tasted like!  To my relief it tasted nice!  I know I would still have had to drink it even if it tasted awful but it was the unknown of what it was going to taste like that I hated!  As I drank it, x-rays were taken of my swallow to get a better understanding of my swallow process.

 

The following day the speech therapist had a surprise for me! Instead of having to eat custard she wanted me to try something new…a custard cream biscuit! Proper food!  At first I coughed on the crumbs so spat it out but I tried again with more success!  I wasn’t quite ready to eat a packet of biscuits but it gave an indication of where I was at with regards consistency.  She decided I was able to try a diet of soft foods instead of puréed food!  She also had the results of my video x-ray. The results showed that I had weakness in my mouth and throat and a delay in my swallow (the weakness in my mouth made it hard to hold on to food and drink in my mouth and made it harder to chew food).   But the encouraging news was that over the last ten days I had already made huge progress with my swallow.   Hours after waking from surgery I was unable to hold a mouthful of water in my mouth and I choked as it went down the back of my throat as I had no swallow, so to come from that to being able to eat soft food and slightly thickened fluids in ten days was huge progress.

 

Later that morning I was taken to the physio gym.  I was trying to walk a figure of eight around cones, if the physiotherapists hadn’t been standing next to me I would have fallen.  It brought it home to me why I wasn’t ready to be sent home.  I had made progress in walking – as long as it was in straight lines!  We practiced walking and turning with crutches but I couldn’t coordinate taking steps and moving my arms with the crutches, so I was given a different walking aid.  Ladies and gentlemen let me introduce you to Mavis (so named by my work colleague Sharon!)

photo 2 [2738]

Mavis turned out to be an absolute blessing, we became inseparable!  She brought me a bit of independence, with the help of Mavis I was able to get up and sit in the chair next to my bed, I could walk to the bathroom instead of being taking in a wheelchair (although I still needed to buzz for assistance as I wasn’t allowed to go on my own).  On the Saturday Lindsay and her mum, Lesley, took me a wee walk around the hospital with the help of Mavis!  I was exhausted when I got back to the ward but happy with my little jaunt!

For the last two weeks I had needed assistance of some form to wash myself, it was a bed bath the first few days and then full assistance in the bath and shower. But on the Sunday the carer asked me if I wanted to try to shower myself and she would stand by in case I needed help, what an amazing feeling it was!  But even though I was sat down in the shower I began to tire so she needed to step in to help rinse me, but I was grateful that she let me try even though she would have known it would be more time-consuming, I felt she was helping to promote my independence.

On the Monday (two weeks after surgery) the consultant again spoke of returning to Dumfries, but this time they didn’t talk about going home they suggested a transfer to my local hospital.  I wasn’t too disappointed at not getting sent straight home, after I nearly fell in the gym and after a choking episode a few days ago, I decided I would rather wait a bit longer before going home because I didn’t want to put any worry or onus on Lindsay with regards falls or choking.  Instead I set my sights on a transfer and was happy that I would be a step closer to home and it would mean Lindsay didn’t have the daily five-hour round drive to visit me, instead it would be a ten-minute drive across town!

On the Tuesday and Wednesday my transfer fell through, I admit to shedding a little tear on the Wednesday but then I made myself look at the bigger picture, I had been there seventeen days a few more wouldn’t hurt!  By the end of the day I was told that the transfer was back on for Thursday, I was so excited I couldn’t sleep and I got myself up at six to pack my bags!  At 8.30am my transport arrived and I was saying my goodbyes I got tearful, the staff had been outstanding.  At my most vulnerable they had cared for me with respect, dignity and genuine care and I was so grateful for it all.

As I was ready to be wheeled out of the room the transport support worker asked me if the rollator (Mavis!) was coming with me and I said no it belonged to the hospital. At that point the ward sister stepped in and told me to take it and she wouldn’t tell if I didn’t!  I was so grateful as I had been worrying there wouldn’t be one available in Dumfries.  When we got to the lift at the end of the ward, the nurse who had taken care of me in the high dependency unit came running down the corridor shouting “wait”!  She gave me the biggest hug and told the transport staff to take care of me as I had been her star patient! Needless to say I started crying again!  And so it was with a thankful and somewhat heavy heart I said goodbye to ward 33, but I was looking forward to the next chapter in my recovery.

 

 

Hoists, Hallucinations and Goodbye High Dependency Unit! (part 6 of I’m a 40-year-old blogger virgin…!)

Hoists, Hallucinations and Goodbye High Dependency Unit! (part 6 of I’m a 40-year-old blogger virgin…!)

On the third day after surgery (Thursday) I was told I would have a bath, up until then I had only received bed baths which were painful as I was rolled from side to side and sat forward slightly, but I was also worried about the pain of being moved with a hoist to the bath. It was an unpleasant experience in the hoist and, as I suspected, painful too. I didn’t feel safe even though the sling that was used was a full-bodied one which is like a cocoon, I felt vulnerable; I think it comes down to feeling a loss of control over all your movements and needs. For the first time since surgery my hair was washed, it was a strange sensation as the nurse touched my head, it felt numb and yet painful at the same time, and even down to this day it still has a degree of numbness when it’s touched, but thankfully less painful. After the bath, the only way to dry me was on my bed and so I still needed to be rolled to be dried and to change the bed sheet, I was exhausted after it all.

On a side note, I’m a carer in a nursing home and as I reflect back on my experience of being hoisted and receiving full assistance with my mobility and personal care it gives me incredible insight in to what some of my resident’s experience on a daily experience.

During the first day’s post-op I would often hallucinate! When Lindsay came to visit me on the Thursday I told her she had just missed Alan, Ian and Kelly (good friends from Hull, England).  I was convinced they had been to visit me that morning, however, when Lindsay asked for a bit more detail and I said they had arrived with her dad…she knew I was talking gibberish!  Other examples of my hallucinations were I kept seeing the ward equipment – like monitors and over bed lamps – as dark, menacing monsters or spies!  Also, there was a doctor who had shoulder length hair, and I was convinced that every time he entered the HDU he would introduce himself by saying: “Hi, my name is David, but I use to be known as Sarah”, bizarre and untrue (I asked a nurse a week later if I had imagined it or if was true!).  My hallucinations also manifested themselves as auditory hallucinations.  I often heard music being played through the walls, one night I couldn’t sleep for the ‘music’ and I asked the nurse if it could be turned down…only to be told there was no music playing!

It had been arranged that on Thursday afternoon Lesley and Allan (Lindsays’ parents) would travel up on the bus to visit me and then they would return home with Lindsay as it was her final day staying in Edinburgh.  I felt sad that she wouldn’t be close by, but I was over the worst and our dog – Dexter – would be missing his mummy!  And she continued to drive up to visit me on a daily basis for the next two weeks!

On the Friday I had a surprise visitor – this one was not a figment of my imagination! – my colleague and good friend Dot travelled up with Lindsay, it was a lovely surprise! Dot has since told me that when she saw me she got such a shock at how ill I looked and how wee and helpless I appeared.  She also said she witnessed something beautiful, she told me that Lindsay was staring intently and smiled adoringly at me when she told me I was looking so much brighter.  And Dot said I was looking at Lindsay and it looked to her as though I was searching Lindsays’ face and hanging on to her every word as if wanting to believe her loving reassurances.  Dot said it almost brought her to tears but she didn’t want me to see her cry.  Her support to Lindsay that day was worth more than anything money can buy and very much appreciated. Oh and apparently they went sightseeing too (in other words they got lost!!).

Later on that day I was visited by two physiotherapists who were there to help me to stand up.  Up until that point I hadn’t given standing or walking much thought, I assumed I was being hoisted because I was too weak/tired and groggy to walk, it never occurred to me that there would be a problem.  However, as I went to stand up my legs buckled, it was only because the physios were holding me on either side that I remained standing.  I got a fright and I couldn’t understand why my legs wouldn’t support me.  The physiotherapist told me not to worry, they would let me rest over the weekend and they would return Monday to try again.

On the Saturday the nurse had suggested she hoist me on to a chair so that I could surprise Lindsay!  I was shocked at how such a simple task made me feel exhausted and even though I tried so hard to stay in that chair until Lindsay got there, I eventually had to admit defeat and asked to go back to bed before she arrived.  But I managed it the following day and Lindsay and her mum were so pleased to see me sat in the chair as it represented progress on my part!

There were several times in my first week I would be told off by the nurse as I would try to tolerate the pain, one, because I’m stubborn and, two, because I didn’t want to bother her (because I had a feeding tube it wasn’t a simple ‘here’s a pill to swallow’ it was a bit more intricate at getting the medication through the tube, that’s why I thought I was being a bother!) but that would result in me leaving it too late and, just like on my first night, the pain seemed to go from being bearable to excruciating and would have me in tears.  Believe it or not, it took me over a week to finally give up my stubbornness and my concern at bothering the nurses and ask for pain relief.  Even now I still get it wrong and think I can manage the pain without taking medication!

I was asked by the consultant neurosurgeon if I felt up to being asked questions about my symptoms by two medical students, he said that although some of my symptoms were common to other illnesses my diagnosis was rare.  I was more than happy to as it may help future doctors be able to identify a rare and life threatening case. During the rest of my stay I was asked several more times to be a ‘guinea pig’ for the students, it was fascinating listening to them fit the different symptoms together to try arrive at a diagnosis.  Although no one arrived at the correct diagnosis of an arachnoid cyst on the brainstem, they were able to rule out what it couldn’t be, and one girl was able to say my brainstem had been compromised but she didn’t know what the cause was.  It showed me how complex the brain is and what a vast amount of knowledge is needed by the medical students.

By the Sunday it was decided by the consultant neurosurgeon that I was now able to be transferred to a ‘normal’ room on the ward and out of HDU! I was happy because again it showed progress, but I was also a bit sad as I had grown close to the nurse in HDU and felt safe under her care.

I escaped from hospital…but now I want to go back! (part 3 of I’m a 40 year old blogger virgin…!)

I escaped from hospital…but now I want to go back! (part 3 of I’m a 40 year old blogger virgin…!)

In my last blog I think I mentioned once or twice that I wanted to escape from hospital! But after the euphoria of being allowed home for the weekend had worn off I began to feel a bit vulnerable walking about in the outside world. What if the ‘thing’ on my brain started misbehaving?! But me being me I put on a brave face and hid my concerns from everyone, but there was a sense of relief at returning to hospital on the Sunday afternoon. I entered the hospital armed with munchies, an e-cig and a new-found determination to be patient and stay in for as long as it took to get things resolved.

On the Monday I had an MRI scan and underwent further tests, I was asked to say the phrases ‘British Constitution’, ‘baby hippopotamus’ and ‘West Register Street’ I tried to get my tongue round them but – it’s hard to describe, it was like trying to talk after being at the dentist – but then this wasn’t a new thing for me I’d always felt it a struggle to speak clearly. But up until now I’d thought it was just the way I spoke, to suddenly learn that it was caused by the cyst and that the correct term for it was dysarthria was all a bit overwhelming. I say that because the way I spoke had always made me feel very self-conscious, it often stopped me initiating conversations with strangers or speaking out in a group of people, and so affected me socially. My mind starting wondering what if? What if this cyst was removed would I be able to speak ‘normally’? To someone who had been so self-conscious and inhibited by their speech this was a tantalising prospect.

I was asked to repeat the heel to toe test that I had originally attempted at the doctor’s office, with the same consequences – I stumbled off to the side. I was also asked to touch my nose with my finger, and I thought well that’s an easy one at least I’ll pass one of their tests! I only succeeded in poking my cheek with my finger!

The next day the doctor explained to me that my scan along with their report on me had been sent to the neurosurgical team at Edinburgh hospital and I could go home and Edinburgh would contact me soon to arrange an appointment to see the consultant neurosurgeon. I asked if I would be able to return to work until I was contacted, I’m sure she tried to cover up the ‘is she kidding’ face when she said that really wouldn’t be recommended, I should go home and rest until I hear from Edinburgh!

I went home and started googling all the unusual medical words that were on my discharge letter! There were sentences that I had no idea the meaning of, such as, “there was effacement of the fourth ventricle, medulla and adjacent structures with no hydrocephalus”, but even after googling I soon gave up trying to understand! Instead I lay on the sofa and waited impatiently for the call from Edinburgh!

There were times I would feel guilty for not being at work, my reasoning was I had managed to work before regardless of these symptoms, but then there were days my symptoms were very prominent and I struggled with daily living.

After only a week after being discharged I received the call from Edinburgh and I was offered an appointment to have a ‘chat’ with the neurosurgeon. At this point, I was alarmed at the terminology ‘chat’ as I had been googling arachnoid cysts and had read that a lot of people were having difficulty convincing their gp or neurologist that their A/C was the cause of their symptoms, and, on that basis, they were being refused treatment for the cyst. Every forum and Facebook page I entered to do with arachnoid cysts all had the same underlying story, people were being told that arachnoid cysts were asymptomatic and they had been an incidental finding and not the actual cause of their symptoms. And so I travelled to Edinburgh with a certain amount of anxiety that the ‘chat’ I was about to have would be along the same lines.

I needn’t have worried, although a lot of what was said to me in that ‘chat’ was a blur the main thing that stuck in my mind was the neurosurgeon had said “obviously you can’t be left like this and so the cyst will have to be operated on”. The relief that my symptoms and the cyst were being taking seriously was immense, but then it should be said that at no time had anyone in the medical profession led me to believe otherwise it was only what I had read on the internet, so it made me realise that googling everything wasn’t always a good idea! (That’s not to say I always remember that pearl of wisdom!). Lindsay and I were shown my MRI scan and we were shocked at the size of the cyst and how obtrusive it looked. I was told it was a surprise I could still walk, talk and swallow with the damage that the cyst was causing to my brain stem. It felt surreal to me then and it still does today.

Shortly after this appointment I received a letter from the neurosurgeon which gave a very detailed account of what would take place through the surgical procedure. My favourite part of that account was “I will gently lift the brain up and the cyst should be apparent under the cerebellum”, another surreal moment, to think that somebody was going to be lifting my brain up!

The letter also gave me a detailed list of all the risks attached to the surgery, they ranged from “increased neurological damage, possible damage to the nerves to your eyes, face and throat causing swallowing difficulties, speech difficulties, double vision, weakness or numbness in the face”. She went on to say “there was a small risk of complete paralysis, or severe haemorrhage which could cause death or severe neurological deficits”.   But she also wrote there would be risks if I did nothing, “If you did nothing the cyst would continue to cause more trouble and you could have significant problems with weakness of arms and legs, even more difficulty with speech and balance and the nerves to your face including the swallowing nerves could be affected and paralysed”.

Friends who have read that letter often ask where I got the strength to go ahead with surgery, but to me there was no alternative and so no hesitation, because when I compared the outcome of doing nothing with the outcome of any of the surgical risks, the possible eventualities were, in parts, similar. So I concluded I would rather try to do something to resolve my symptoms than sit back and do nothing and let my condition deteriorate. If that something was brain surgery then so be it!

My friends also found it peculiar that I appeared unfazed by the prospect of brain surgery and appeared more upset that I might need to have my hair shaved off!  It was true, the thought of losing my long hair was a very big deal to me!

As I sat at home waiting for the big day my symptoms began to get worse and new ones developed. My lips, tongue and left cheek had begun going numb. My heels were also starting to go numb making it difficult to walk at times. I started having difficulty swallowing, at the time I found it hard to understand how one minute I would be eating and swallowing as normal and then I would be struggling with it, it was as if I would suddenly forget how to swallow, what we all might think as a simple daily thing that we do without thinking about it was suddenly becoming a struggle.

These new symptoms brought to mind the letter from the neurosurgeon and the warning she gave if I did nothing then the cyst could go on to cause the nerves to my face including swallowing nerves to be affected and paralysed, and so these new symptoms reinforced my decision to go ahead with surgery. They also made me feel a bit anxious that permanent damage might occur before I could have surgery. It was all a waiting game, but in retrospect I really hadn’t had long to wait. Only four and a half weeks had passed between that first day I had gone to the doctors with symptoms to the day of my operation!

I mentioned earlier that I had a habit of googling everything but when I learnt the name of the procedure I was having was a craniotomy fenestration I made the choice not to google it before my surgery. It was months after, when I was back home that I decided one day to google it, oh my gosh you will never know how relieved I was that I hadn’t done that before the operation!

On the subject of googling, I will admit to asking google if I should stop drinking wine and smoking before brain surgery! The common consensus of the internet was yes! So one week before surgery I managed to stopped smoking…but I carried on drinking wine right up to the penultimate night!

 

Please feel free to visit my Facebook page:

https://www.facebook.com/myarachnoidcystjourney/

 

 

 

 

Part 2 – I’m a 40 year old blogger virgin sharing my story about my arachnoid cyst and brain surgery

Part 2 – I’m a 40 year old blogger virgin sharing my story about my arachnoid cyst and brain surgery

Where was I? (if you’ve come in at this part you won’t know where I was either!  This story is carrying on from ‘I’m a 40 year old blogger…part 1’!).

Oh yeah I was being detained by the NHS against my wishes!  But if I had walked out of the admittance ward for the sake of my visitors arriving from Hull then it would have delayed the investigation into what was causing my symptoms.  I was tempted but my doctors words were ringing in my ear (along with the tinnitus – one of my symptoms!) that he thought it could be MS.  Although it wasn’t by any means a positive diagnosis, it was enough to keep me from doing a Steve McQueen great escape!

I had a CT scan and then had to wait for someone to come and explain what the scan showed – if anything.  By now, despite my good intentions of not escaping, the longer I was left waiting the more I plotted and schemed of a way to get out!

Finally, late in the afternoon (I had been there since 9am) a consultant came to speak with me regarding the scan. He told me that the scan showed I had an arachnoid cyst on my brain which was probably congenital and I would need to be kept in for an MRI scan.  With that, he left the ward.  I watched him leave the ward and, although I can’t remember, I wouldn’t be surprised if my mouth was hanging open!  I was frustrated, hungry, upset at not being there for my visitors and  in need of nicotine and the consultant just speaks complete jargon to me and swans off.  Now excuse my ignorance but I didn’t know what congenital meant then,  I didn’t know what the implications of having a cyst on the brain were and the only thing I associated with arachnoid was the scary movie about spiders! (I know the movie title doesn’t have the ‘o’ in it, but arachnid/arachnoid same difference to me at the time! I also know that some people would scoff at me using the term scary to describe that movie but what can I say I’m easily spooked…just ask Lindsay!)

After a restless nights sleep, I was seen by a different consultant who explained the CT scan findings to me in laymans terms, so now I knew congenital meant present from birth, and arachnoid meant ‘the fine, delicate membrane, the middle one of the three membranes or meninges that surround the brain and spinal cord, situated between the dura mater and the pia mater’ (I’ve just lifted that from the dictionary because even in laymans terms I’m struggling to recall her exact definition!).  She also explained why I needed an MRI scan and said I would hopefully have the scan today, but if it couldn’t be done today (Friday) it would be Monday.

I jumped on the possibility that if it couldn’t be done today then it was pointless taking up a bed over the weekend and I might just be able to escape – if only for the weekend!  So I asked her if the MRI scan couldn’t be done today could I go home to my visitors on the promise I would return Sunday afternoon!  She couldn’t see a problem with that!  Her approach and manner towards patients were so different to the consultants from the previous night, I wish I could have bottled it up and sprayed it on him!  But that continued to be my experience through the course of my care with those in the medical/health care profession.  Some excelled in their standard of care, empathy and compassion, while others failed completely in these qualities, thankfully I can say the latter occurred the least often.

I didn’t get the scan that day so I did get to escape to spend time with friends and I did return on the Sunday afternoon as promised!

To be continued in part 3…

**please feel free to visit my page on Facebook:

https://m.facebook.com/myarachnoidcystjourney/

I’m a 40 year old blogger virgin wanting to share my story about having an arachnoid cyst and brain surgery (part 1!)

I’m a 40 year old blogger virgin wanting to share my story about having an arachnoid cyst and brain surgery (part 1!)

The title pretty much sums up the bumpy ride readers may experience as I get to grips with what I’m doing (or don’t get to grips as the case may be!)

I’m on a journey of recovery after brain surgery – a result of the discovery of a posterior fossa arachnoid cyst a year ago (March 2015) and I wanted to share that story with others, firstly to raise awareness of arachnoid cysts and secondly to document the journey I’m on.  Although I’m almost one year post surgery I’d like to start my story from the beginning!  So here goes..

I went to my gp at the beginning of March 2015 after my colleagues had nagged me at work (because I had taken several dizzy spells in their company!). I don’t like going to the doctors, for some reason I feel like I’m wasting their time, but after much nagging and threats of being dragged there by my colleagues I eventually went!

At this point my symptoms were nausea, occasionally followed by actually vomiting, a swooshing/ringing in my right ear, a sensation of falling inside my head and occasional weakness in my wrists. My gp gave me anti sickness tablets on the thought it could be vertigo, however he said he wasn’t convinced with that diagnosis. He asked me “if I had always spoke like that”, I have no idea what he meant by ‘like that’, what he meant was had I always slurred my words…not unless I was crawling out of the pub! He also discovered I had a nystagmus in my left eye.

Over the next 2 weeks my symptoms got worse and new symptoms appeared. Colleagues also started noticing and commenting that I was slurring my words (I’m sure they thought I’d came to work still intoxicated from the bottle of wine the night before!).  I began getting pins and needles in my arms, hands and face, and sometimes they would go numb completely. When I first woke up I couldn’t lift my arms or head for a while as they were numb. My balance and coordination were ‘off’, I was getting severe headaches (I never get headaches) and I was constantly tired. I made another appointment to see my gp, I couldn’t get seen for a week, and much to the annoyance of my colleagues (yes they were nagging me again!) I accepted to wait the week.

On the day of my appointment I was busy planning things I needed to do for the arrival of friends who were travelling up today from Hull and staying a few days. The last thing on my mind was getting admitted to hospital…but that’s what happened.  Firstly though let’s talk about the appointment, my  gp did several tests, one which was walking heel to toe, he demonstrated what he meant and he did it with ease, my turn…as I went to put one foot in front of the other I staggered off balance, I tried again but to no avail, each time I attempted it I would lose complete balance and stagger to the side. He asked if I was surprised I couldn’t do it, I wanted to reply yes I was surprised since I’d just witnessed my 50+ year old doctor manage it with no problem, but my actual answer was just yes I was shocked!  He then asked me to stand with my eyes closed, but as soon as I closed my eyes standing up I had the sensation I was falling and I began to sway. At that point the doctor told me he wanted to discuss his findings with his colleagues and then he would get back to me. So off I went with my head full of things to do for the arrival of my visitors. I drove to Tescos – less than a quarter of a mile from the doctors’ surgery – when my gp phoned. He wanted me to return to the surgery to collect a letter and then to take myself and the letter to the hospital for further tests. I am sitting in my car in a supermarket car park trying to process what he had said, when he continued to say he wanted to put his cards on the table and say he suspected it was MS.

Once he had hung up I drove home (food shopping for visitors abandoned) on autopilot and I was wondering what I was going to say to my partner, that was my biggest concern at the time.  I knew she’d still be in bed (well it was 8am and we were on holiday!) and I remember feeling bad at having to wake her so she could take me to the hospital…oh I forgot to mention the doctor didn’t sound too pleased that I was driving with my symptoms!  So I crept into our bedroom and watched sleeping beauty for a while before finally plucking up the courage to drop my bombshell.

We both sat on the bed in shock and decided the best thing to do in a time of crisis was to go for a cigarette (a dirty habit I know and one I’ve kicked but more of that later!). We decided Lindsay (oh I’ve not formally introduced you to Lindsay, she is the sleeping beauty that is my partner!) would stay at home and tidy the house and do the food shop for our visitors and her mum would take me to the hospital where I would have a quick test and I’d be back home before the visitors arrived…how wrong I was!

After my arrival at the hospital I expected to be seen straight away by the consultant named in my letter from my gp, however I was sent to the admittance ward where I assumed I was waiting to see said consultant!  Then the nurse who was dealing with me started to put a band around my wrist and I naively asked what that was for!  She said everyone had to wear an admittance band for i.d purposes.  My naïve response was – oh I’m sorry you’ve made a mistake, I’m not here for admittance I just need to see Doctor so-and-so and then I’ll be on my merry way!  She looked at me with a weary expression and said I wish doctors would tell their patients when they send them to the hospital they will be admitted so that an investigation to their symptoms can be carried out.  Oh but you don’t understand, I said, I’ve friends arriving from Hull in a couple of hours so I can’t stay long!

Well I am still on my recovery journey and I sadly tire easily, and I’m feeling weary typing so I’m going to sign off for now but I hope to continue my story over the coming days.  Thank you for reading this far and I hope the read wasn’t too laborious!

*please feel free to visit my Facebook page:

https://www.facebook.com/myarachnoidcystjourney/