Chiari Malformation, Writer's Blog

Help to Share the Friday Feeling

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I sent my husband a Whats App message during the morning, mentioning I felt tired and needed a walk in the sunshine. He offered to meet me for a coffee at lunchtime and duly arrived, meeting me with bare arms in the warmth of early Spring sunshine.

We wandered to the Cathedral Refectory, conveniently located a short distance away, both it and my place of work being located in the grounds of Norwich Cathedral. We enjoyed a drink and each chose a slice of home-baked cake which we hungrily devoured. Feeling stifled, I suggested a walk in the Cathedral Close. The infinite blue sky offered a vibrant backdrop for the cathedral, resplendent in its majesty. We are humbled to be afforded the enjoyment of witnessing such beauty during our midday break.

I was reminded of a story one of my friends from dancing had drawn my attention to while we were at Ceroc last night. The local news yesterday evening had shared the story of a young lady who is very sick and needs help to raise over £300,000 just to give her the chance of surgery to relieve and, indeed, save her. One of the conditions she is seeking help with, is a condition my own son suffered with and had subsequent surgery for, just four years ago. The condition is known as Chiari Malformation which is neurological disorder whereby the lower part of the brain is pushed down from the skull and interferes with the spinal cord. In short, it gets in the way of fluids needing to make their way past and the pressure on the base of the brain results in a number of painful and debilitating neurological problems.

The surgery required is called decompression and is normally available, as it was to my own son, on the NHS in hospitals such as Addenbrookes. The lady, Sarah Jackson, has other related conditions which prevent even the experts in the UK from attempting the surgeries she requires and she has to see one of the top specialists in the world who is based in America. He can operate and give her the best chance of a normal life but she needs to raise around £300,000 for that and the other costs such as flights, scans, etc. This all has to be raised within two months which will not be easy.

I found her ‘gofundme’ page online and on Facebook and researched her story further. If only I could win the lottery – this lady would be high on my list of those I would wish to help. So far, just over £14,000 of the £300,000 has been raised and I felt I would dedicate today’s blog post to sharing her cause in the hope that those who have a few spare pounds could click on the link and donate whatever they can.

If you can help by donating or even if you could just share this blog post or the relevant links below, you could just be helping to give this young lady her life back. A life she cannot remember as normal. Surly she deserves the chance to walk out at midday and see similar sights to those I have had the privilege of seeing today?

Sarah’s ‘Go Fund Me’ page can be found here:  https://www.gofundme.com/slsnbs

Sarah’s Twitter page can be found here: https://twitter.com/LifeForSarah

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Chiari Malformation, Writer's Blog

Dear Former Self

Dear Former Self

As you take a break from the pain that is your life right now in 1995, read this letter to you which is sent from your future heart. Your three young children are safe at nursery and school, enhancing the great start you have given them in life. Many children start school unable to read and write their name, recite the alphabet, count to ten. Be proud of yourself. Your children could all count to at least twenty, sort and count colours and were able to read and write their own names, their full names no less,  before they walked into the classroom for the first time. Be proud of your ongoing achievements with three little ones so close in age.

As you walk through the rooms of your beautiful, four bedroom detached house, set in half an acre of landscaped gardens, remember the good things you have, try not to dwell on the dreadful behaviour displayed by your husband, the father of your children. You are strong, you are a wonderful mother and a good friend. You may not believe it at this moment in time, but you are a good wife. He is aware of that for the most part. He is aware of you and your children. Unless he has been drinking. Then he is aware, as you so sorely know, of nothing but his own needs, his music, he is largely aware of nothing much at all.

It is time for you to admit to the world that you are the wife of a violent, nasty alcoholic. It is time for you to stop hiding it away, pretending that the reason you turn up on your mother’s doorstep is not a neurotic young mother worrying, but a wife and mother who is fearful. Scared of what he will do next. Stop hiding it, tell the world. Ask for help. Speak to his mother. She was, after all, an alcoholic in her time.  Of all people, surely she will understand. I know you, though, and words, which you believe to be words of failure, will not come.

Oh, yes, you have challenged him when you have found him urinating in your four-year-old daughter’s wardrobe. You have put yourself at great risk, dragging him, drunken and staggering, from her room as he swayed over her bed in a stupor. You have no idea just how brave you have been to stay with him for so long.

Do you remember the time you came downstairs at three in the morning for a drink, having left him in the lounge listening to music and making his way through can after can of extra strong lager? Do you remember how you walked barefoot into your beautiful kitchen and slipped, banging your head on the wall as you fell? Do you remember reaching down to find the reason? Finding yourself sitting in a puddle of disgusting, strong-smelling urine? Do you remember the anger seeping up inside of you as you scrambled to your feet and marched, dripping with urine, bravely into the living room to challenge the drunken man sprawled on one of your two beautiful Marks and Spencer sofas, before you?

Oh yes, you do remember. You remember him jumping up and grabbing you by the hair and dragging you to the hall cupboard, the one where the boiler was housed. You remember him pushing you inside as you begged him to let go of your hair. You remember him shoving something in front of the door to that cupboard don’t you? Of course you remember. You slid to the floor, tears flooding into your lap, rubbing your head, sore from his manhandling. No amount of banging and pushing could dislodge that door and you were afraid of waking your children. You resolved then that you would leave him.

You still didn’t leave him. You fell for his remorse when he eventually surfaced the next morning, woken by children who were sleepily wondering where mummy was. He found you in the cupboard. He didn’t remember leaving you there and seemed confused but that was partly the usual hangover. You begged him, again and again, to get help for his drinking problem. He denied, over and over, that he had a drinking problem. Still, you kept it to yourself, fearing the judgement of others. Fearing they would think you had driven him to drink. You always forgot where you had met him – you worked behind the bar in a hotel and he frequented that bar, often to the end of the evening, drunkenly leaving just before you locked up. It wasn’t your fault. You always thought it was your fault and you tried to make it right.

You always put your children first. When they were at nursery and, later, at school, you took in other people’s ironing, needing an income of your own. You tolerated his overspending and debts and worked hard to ensure your children were not missing out. Luckily, you had two sets of generous grandparents who helped out a lot, buying gifts of clothes for, and giving you money to spend on, the children. You had to hide the money until you could take the children shopping but you didn’t do a very good job of it. He always seemed to find where it was hidden, his need for cigarettes, beer and fine shirts, Jonathan Trumble bags being your worst nightmare. It meant often you would go to your money tin to give change for a larger note when a customer came to collect their ironing and the tin would be devoid of cash, where you knew you had previously left over fifty pounds.

When each of the children were first born, you had gone to a building society in town together and opened them a savings account, into which you paid their birthday and Christmas monetary gifts. When you were able, you started to pay in a little when you could and your mum gave the children pocket money which they enjoyed going into the bank to save for themselves. The savings accounts had accumulated to over five hundred pounds each, but one day you went to pay in some money and noticed the balances were all zero. The money had been withdrawn from the account and, you discovered, been spent on a set of beautiful (apparently) new speakers, set on stands with special pins to avoid vibration. They were being set up in the living room when you arrived home.

Many tears were shed over his constant spending, and the later discovered missed mortgage payments. Even more private tears were shed each time he shoved you around, with the occasional slap and a few punches when you dared to question him about spending when you had nothing. It was clearly never going to end. You remember back to the day he punched you so hard in the torso. Not only was it in full view of your eleven month old daughter, but it was aimed at your heavily pregnant-with-twins stomach. You had stumbled to the downstairs toilet at the time to catch your breath and examine your body but had not dared to stay in the room, fearing he would start on your little girl. To your knowledge, he never hit the children. To this day, you wonder in the back of your mind if it was that heavy punch which landed on the side which cradled your first born twin, which caused him to have suffer physical issues with his brain as a teenager and into his twenties. You know, but you will never know for sure and it will break your heart, forever.

I wish I could send this to you back in the early 1990’s, so you would have hope that your life would turn out better and leaving him would have been the best answer. Instead, I know you will stay with him and endure another few years, trying to salvage something of a family unit for your beautiful children. If only I could tell you that you wouldn’t have been able to fix him, that he would eventually drink himself into an early grave and die at the age of fifty. It sounds heartless, but if you had known that, you might have escaped sooner.  There was nothing you could have done to change things.

You did alright, you know? Yes, there have been ups and downs and you have made some hugely strange choices that you wouldn’t have expected of yourself back then, but you made it out and did mainly ok. Your children are mostly doing ok. You have some issues with one of them who seems to have adopted the angry and self-destructive trait of your ex- husband and you constantly strive to find a better way for him, knowing deep in your heart that you are probably not going to succeed. He just has to find his way.

Just be assured that you will do your best, it might not always be good enough, might not always be the ‘norm’, but you will do your very best to make it work for your children. You will definitely make it out alive, scarred and emotionally wounded, but you are going to be just fine. Try not to spend your whole life beating yourself up over the past.

With love from

Your Future Self

x

 

 

 

Chiari Malformation

Living with a Chiari Malformation

My son was about 21 when he sat down one day and told me he was concerned about the head pains he had been experiencing on and off for a few months. It was the first time he had mentioned it because he thought it was nothing but then he started to realise that the shooting pains were happening every time he coughed, sneezed or bent his head forwards. He had a dull ache at the back of his neck which never seemed to ease, and the shooting pains were lasting for longer each time they happened and he was clearly quite concerned.  

We booked him an appointment with his GP and he asked me to go along with him to help reiterate how worried he was. The GP was thorough but felt it was more than likely to be a kind of migraine, especially as Daniel had experienced migraine in the past, and sent him away with some medication to try for a month. The pills didn’t work well for Daniel and his GP offered some mild anti-depressants which were for nerve pain but they just made him feel constantly tired, so we went back to see the GP. Each time, he saw a different GP. Dr Thomas was due to retire at the end of the week, so I am always thankful that we were able to see her as she listened as Daniel explained his symptoms and told us that she had seen a case many years ago of a teenager who had a Chiari Malformation. She offered a referral to a Neurologist at the local hospital and advised us to look up the condition to see if we felt it fit. It did.  

A Chiari Malformation is a structural defect in the base of the skull and the part of the brain which controls balance (the cerebellum). This usually sits in an opening in the skull, allowing the spinal cord to pass through it and is called the foramen magnum. When the cerebellum extends (a little like a tonsil) into this area of the upper part of the spinal canal it is called a Chiari Malformation. It causes pressure on the brain stem, can affect functions controlled in these areas and block the flow of cerebrospinal fluid (CSF) which surrounds and cushions the brain and spinal cord. 

Daniel attended the appointment with the consultant at the local hospital but as they had no expertise in Chiari Malformations they referred him on again to a consultant at Addenbrookes Hospital in Cambridge. The consultant at Addenbrookes, Mr Laing, was very attentive and made note of all of Daniel’s symptoms before carrying out some simple motor tests and requesting both CT and MRI scan appointments.  

Daniel’s scans showed that he did, indeed, have a Chiari Malformation and Mr Laing spent time going over the medical and surgical options and what they entailed. Daniel was not prepared to feel this level of shooting pain, insomnia, weakness and disorientation for the rest of his life, so he chose to undergo a surgical procedure called a Posterior Fossa Decompression which creates more space for the cerebellum, thus relieving the pressure and the pain. There are other symptoms which present in patients with the condition such as hearing problems, dizziness, difficulty swallowing and speaking, tinnitus, scoliosis (curvature of the spine), depression and hand coordination but not everyone suffers from every symptom. 

Daniel arranged to have his head shaved for charity (knowing he would need to have patches removed for the surgery anyway) and the local press came in to his place of work to interview him and take pictures which was a boost. 

The day of the surgery was, as always in hospital, a waiting game and we sat for hours until his slot came around. He eventually left the ward at around three in the afternoon and didn’t return from the surgery until gone eight that evening. The back of his neck was bandaged and sealed, and he was in a lot of pain, unable to move. I wanted to be nearby, so I rented a room on the Addenbrookes campus rather than travelling ninety minutes twice a day just to see him.  

In the days following his surgery, he was in so much pain which was traumatic for all concerned but immeasurable for Daniel. Unable to sleep, we kept his mobile fully charged to enable him to read the numerous messages from well-wishers.  The most poignant moment was when his twin brother, Matthew, visited him. They had not always been close (as many brothers aren’t) but the concern on his face when he sat at his brother’s bedside was an image which will never leave me. Daniel had so many people who wanted to visit him, his sister and brother-in-law, two step brothers and friends so we had to keep to a very strict rota and, although visitors were almost all from as far away as we were, we had to keep visits short as he was in so much pain. 

Daniel improved over the next few days and was discharged to come home to our house a mere eight days later. He seemed brighter and was asked, after discharge, to wait in the dayroom for various drugs. At that stage he seemed to go downhill, sitting upright for that long and he felt sick, dizzy and in terrible pain. The staff felt it was all post-operative pain and advised us to go home and monitor the situation. I should have been more assertive at that stage because we had to stop on the way home as Daniel felt so sick and didn’t know where to put his head to try and get comfortable. He was in sheer agony. Seeing a grown-up son crying in pain is heart wrenching for a mother. 

We monitored the pain for a couple of days but even the strongest painkillers didn’t help for more than a short while, so I called the GP who sent a locum around to check Daniel out.  Daniel was clearly in so much pain and the locum wanted him to walk up and down the living room and carry out motor tests which Daniel simply couldn’t do. He was moving Daniel’s head from side to side and making the agony so much worse. I had to intervene and get him to stop as he clearly didn’t know anything about the condition and the procedure. I was scared he would do more damage than good. We gave it one more day and I called Mr Laing who advised me to call an ambulance and get Daniel back to Addenbrookes straight away. 

Having been advised to go through A and E for processing, Daniel was seen quickly, and we were advised that he would go for another scan. He was given some stronger painkillers and we were told to go home and wait for news. He was sleeping soundly when we left him. 

I was awoken by a text message from Daniel in the early hours of the morning telling me that Daniel was about to be taken down for emergency surgery as the scan had shown that he had a build-up of fluid on his brain which was causing the extreme pain and that they needed to drill into his skull and get the fluid drained away. Daniel was panicking, and the text begged me to get to Addenbrookes. I called the neurological ward and was advised that he had already left and would likely be in surgery for an hour or so and he would be under anaesthetic so would not be fully awake until later in the morning. When we got in to see Daniel (visiting hours are unrestricted on the neurology wards) he was sitting up in bed and feeling what he described as much fresher. After a few days he went downhill again, and further scans revealed that the hydrocephalus (build-up of fluid) had returned. It was clear that his body had lost the ability to drain its own CSF and he would need a more permanent solution. The consultant discussed further surgery to insert a VP shunt which would remain in place.  

A VP shunt is inserted via a surgical procedure under a general anaesthetic. A catheter is threaded through an opening and into the brain and another is inserted under the skin travelling down to the chest and abdomen, where the drained fluid will be absorbed. There is a pump (or valve) placed behind the ear which automatically activates when the fluid increases. This can be set to different levels. 

Daniel came through this, the third surgery to his brain in as many weeks, and his recovery then started to pick up pace. He had to come to terms with no longer being able to play 11-a-side football due to the risks involved.

Daniel was lucky. He had an excellent surgeon and has come through the worst of this with his life intact. He still suffers with dizziness and disorientation, needing his shunt to be readjusted at times and still has some degree of constant head and neck pain. He is waiting for a referral to a head pain clinic at our local hospital where he has been advised that his best route now might be to have Botox around the decompression scar site. Time will tell but we hope he is over the worst of this horrible condition now.