In February 2016, most unexpectedly, I was diagnosed with Hydrocephalus by Drs in Dubai. I'll summarise events leading up to that day, and the what has happened since then, in just a moment. What is certain in my case is that we still have no idea how it happened! I wanted to be sure to write about Hydrocephalus with a view to making people aware of the condition and also as a way of updating the hundreds of people who reached out to support my family and I. It is thanks to these amazing people around the world, that I am sitting here today typing these words.
Once I was strong enough I was encouraged to write, as many before me have done, as a form of rehabilitation a kind of exercise for my brain and in some way it may help my recovery. I have lost count of the number of attempts I have made to write this particular post. How much should I share? What will people think? How can I best help raise awareness of Hydrocephalus? Will this make any difference or am I just kidding myself? Well, I guess I'll leave that for you to decide.
Many years ago I remember watching the British broadcaster and national treasure, Sir Terry Wogan, interview a movie star who's name I forget. The actor had been involved in a car accident and had suffered trauma to the head and I remember them vividly discussing 'water on the brain' and the surgery they had to have in order to save them. I have no idea why I remembered that particular interview, just one of hundreds or thousands but for some bizarre reason I did remember it. Memory is something I struggled with, all part of the condition apparently, back to that in a moment.
More recently SNL comedian and actor Tracey Morgan suffered a brain injury after the vehicle he was a passenger in was hit by a heavy goods vehicle. The accident happened in 2014 and Tracey continues to recover. I had also heard of babies born who's heads grew very large, some have suggested it looking like an alien's head. Little did I know that I was going to learn the hard way.
In 2015 I had visited the neurosurgeon to check on my old back injury as I had flare up. In September or October the Dr sat me down and said that I would need to have extensive surgery to reinforce my spine. The procedure sounded horrendous, an operation that would take about 14 hours and result in nuts & bolts being fixed to my spine, a procedure known as spinal fixation. Just one look at the picture was enough for me to say NO... let's do whatever we can to avoid it. Little did I know that something completely different was about to happen.
On one occasion I remember telling my team that I was didn't have much room left in my head to think just now and could I get back to you on that in a moment or two, little did I know that I really did not have any more physical space left in my head as my brain was swelling severely.
I returned to the hospital for the second round of acupuncture. On this day we had a VIP visiting our facility and I was asked if I could help, for some reason I said no and that I really needed to get to an important appointment. I delegated responsibility and headed off to the hospital. At the end of this appointment I really felt quite out of it and again looked very pale. In hindsight I have no idea how I managed to get back to the office to continue the day. I remained very quiet for the rest of the day, one of my team knocked on the door to check on me as I had been so quiet. I didn't know what to say and I cannot remember if I said anything at all.
MRI scan finished I made my way to the Drs office. The Dr took a good look at the scan which clearly showed something was wrong. He said, well we thought you may have a brain tumour, it is not a tumour its something else. He went on to say we thought it was something really bad, well its bad, just not the bad we were thinking! Your brain is severely swollen and we will need to do another more extensive scan of your brain to look at the veins and arteries!! Again the Dr wrote a request for a further MRI Brain scan and again stamped URGENT in red. At this point I found myself thinking of my family and friends and then work, what on earth I am going to tell them? What should I say?
I think I called Cynthia and told her over the phone, I cannot remember exactly, perhaps I mentioned something on the phone and then discussed it at home I really cannot remember.
Things just got complicated.
Just because you have medical insurance it does not necessarily mean that you will be covered as we discovered. That is all I will say here.
The beat of the MRI machine and waiting...
Several days passed and it was time for the next MRI scan, they call it an MRV & MRA the V an abbreviation for Veins and A for Arteries. Apparently there are different MRI software programmes for particular parts of the body. This scan was the first scan appointment of the working day and the Dr had said again that he wanted to see me just as soon as the scan had finished. So I carried on and then I waited, and waited and the minutes turned to several hours. Whilst I was waiting I called my parents, who live thousands of miles away. I don't remember too much about that call, I do remember the waiting area in this case the hospital 'coffee shop.' The skylight in that part of the hospital spans about 20 metres in length and maybe 5 metres across, plenty of window space to see the clear blue sky above. I think the conversation with my Mum was quite 'upbeat' and with a sense of humour as our family does in times of crisis. I also remember pictures of the various Drs and their speciality featured on the walls and on some mounted tv screens. I will get back to the pictures in a moment. The wait continued. I had approached the Dr's reception and the nurse informed that the Dr was in a meeting and that he would see me as soon as he was finished with that meeting.
I decided to sit in the waiting area just outside the Drs office. And then I spotted one Dr making his way to the elevator wearing his white Drs coat and looking as serious as ever. I had spotted this Dr's picture and profile on the wall of the area where I had been waiting earlier, and I had said to myself that of all the Drs in the hospital I hope I never have to have an appointment with him, the Head of Brain Surgery !!!!!
Sure enough it turns out the Head of Brain Surgery had been in a meeting with my Dr, the neurologist and not only him but also a fellow Neurologist from Italy, an interventional radiologist from India, the Chief Dr and Head of the Hospital Medical team were all in that meeting and the meeting was to discuss MY CASE and what course of action they should take. Eventually my Dr came out in to the waiting area and took me by the hand and escorted me gently to his office. I walked in to a room full of white coats. The first thing I said.... 'the last time I walked in to a room of white coats was for a job interview!' The Drs chuckled, we shared a laugh or two and then they sat me down! They went on to tell me that the veins and arteries in my head were also severely dilated and that I would need to have an angiography of my brain and then I will need to have surgery, brain surgery!!!! and that the Head of Brain Surgery will carry out the operation. The Dr went on to say that we have a limited time to do this otherwise you could become blind and maybe worse, which does not bare thinking about. I know now that it was a near death experience.
Not entirely sure how I managed to keep going, it was physically exhausting.
By this time my condition was quickly deteriorating, I became very weak, unable to walk any real distance and the headache became unbearable. My short term memory was badly affected, apparently due to the area of my brain that was most impacted by the swelling, I would forget words mid sentence and forget my cups of tea!! Safe to say that my memory has improved, at least I think it has, now what was I saying !?! My attempt there at a joke!
The day before I was admitted to intensive care I do remember lying on the sofa and the pain was excruciating, almost as though my head was being squashed in a vice grip. I had become very sensitive to noise, very irritable (something I tried really hard to control) eventually I became photophobic (sensitive to light) and my short term memory was really bad. I kept forgetting everything. By throughout all of this and really from the moment the Dr gave me the diagnosis I remember feeling an overwhelming sense of calm. It was not a time to panic, it was a time to be strong and this time I should really listen to the Drs advice. He had told me that I should do anything at all, that the only place I was going after the diagnosis appointment was home to rest. I thought he meant my family home in England and my hopes were crushed when he told me that it was too risky for me to fly because of the raised pressure in my head. Now the only place you are going is home to bed. I don't want you to do anything at all, don't even think because the physical process of thinking could also complicate my delicate condition.. I had been told and there was no way I should take any kind of risks. This was to be the most profound experience of my life and to this day I am grateful for the 'calm' before the storm.
The Dr prescribed a very high dose of medication designed to stop my body producing Cerebrospinal Fluid,' the fluid that protects the brain, (in my case my body was not absorbing the fluid and the build up of this fluid in my head was causing the swelling.) And then he sent me home again to rest. A day or two later I found the strength to do some reading with a view to preparing myself for what lay ahead. I did not need to look too far to find a very limited amount of information. Hydrocephalus...blah blah blah... if left untreated it can be fatal!!!!
I very quickly discovered that the only form of treatment for Hydrocephalus is Brain Surgery, there is no known cure for the condition. I knew enough. A few days later I had to meet the Dr again, he wanted to see how I was doing. It appeared my condition was deteriorating. I did manage to ask him what would happen next and he confirmed that I will have surgery, something that I had already prepared myself for and I was as ready as I could be for action.
https://en.wikipedia.org/wiki/Hydrocephalus
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Surgery to place a small tube in to the brain,
fix a valve to the skull
run a tube down through the neck in to the abdomen
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Some time later, after some complications I was admitted to intensive care. My mother and father had dropped everything to be with me at this time. It coincided with my mother's birthday and Mother's Day too. They flew 6000 miles to be with me. My parents are amazing. They are undoubtedly the best Mother & Father anyone could ever wish for and my amazing sisters who have been through so much. I have the best sisters a brother could ever wish for.
Upon admission to intensive care I was prepped for the angiography. The interventional radiologist, a very nice Dr from India, explained in gentle voice that I would be asleep for the procedure. I was surprised to wake up during the angiography and watching a Live 3D computerised image of my head, my brain. It was a pretty unpleasent experience, each time the Dr injected more die in to my body I could feel it inside my head, I was convinced it was some form of torture.
We completed the angiography test and I was taken back to the intensive care unit where the Dr told my parents and I that fortunately he had not found a Fistula but that he had found something else. He went on to say that he did not want to tell me there and then, that he wanted me to undergo the surgery and start the recovery before he gave any more detail... talk about leaving us hanging. I don't know whether he had a quiet word with my parents after that, but to this day he has not shared it with us!!
Time for the operation.
The following day I was scheduled for Brain Surgery. I was well prepared psychologically and all systems go. The operation took place on a Wednesday morning, and I was booked for a CT Brain Scan two later on a Friday morning when the surgeon knew that the CT Dept would be quiet and available... The CT scan seemed to go well... and then a short while later I started to feel quite unwell again. I returned to my hospital room to rest. My parents were due to return to England the following day and the Brain surgeon scheduled his rounds on the morning of their departure.
Something is not right!
By the time he arrived on his ward rounds my parents were ready packed and about to leave for the airport. The surgeon walked in and I told him that I was really not feeling well, he replied 'Don't think too much Jeff and you will be ok.' At this point my father joined in the conversation and said 'I think you will find that my son knows his body and how he is feeling. He is trying to help you Dr.'
Previously the team of Drs had all told us that my case was quite complicated and very rare, it is very rare for a man in his mid 40s to suddenly suffer the effects of Hydrocephalus. They also suggested that I had most probably had this for several years, based on the extent of the swelling of my brain, and I just did not feel it. I am convinced that the acupuncture sessions had opened up some kind of channel in my body which led to the release of the symptoms, it is the only thing I can think of and it seems to make sense to me.
I wanted to assist the Drs and offer myself as a medical case study.
I reminded the Dr of this 'complicated and rare' thing and told him that I really did not feel well, that I was trying to give him as much detail so that whoever may next have to go throw this the team would have some notes for reference! I was offering myself as a medical case study for any future patients.
From there the surgeon decided to check if the valve that had been fitted in my head was working properly and he tried for several hours to adjust the valve. My parents had to leave for the airport, I told them that I everything was going to be ok, I was sure I was going to have to have another operation. Sure enough a few hours later the surgeon, having tried one more time to adjust the valve, said Jeff I am really very sorry but the VP Shunt has malfunctioned and I will have to operate on you again tomorrow morning!
VP Shunts, reliably unreliable!
One of the most common challenges with VP Shunts is malfunctioning and infection. 50% of VPShunts work and 50% don't, I had one of the 50% that didn't work.
That has to be one of the most frustrating things about managing Hydrocephalus. The VP Shunt is renowned for failing and yet it is the only form of treatment. There is no medicine and no alternative to surgery.
Months later I would be told that I would need a third operation as the VP Shunt had malfunctioned again and 'multiple surgeries' are not uncommon for Hydrocephalus patients.
Hydrocephalus is invisible to most people on the street which is a positive thing, yet at the same time it can be negative too. One look at me today and you would think, I hope, that I look just like anyone else. If I was to stand in a line-up I would look relatively normal, whatever normal is!
When I woke up from my third surgery I experienced a lot of pain in my shoulder. The surgeon thought that was because of the extended period of time that I lay on the operating table. One week after I was discharged from the hospital the pain returned only this time in the opposite shoulder. The pain was excruciating, the worst I have ever had in my lifetime. The Drs had no idea what could be causing it.
The pain continued, so much so that I decided to research it myself and discovered that the pain was being caused by the tube touching my diaphragm. !! Again it is quite rare but it has been documented by Drs in the UK and USA.
Article on referred shoulder pain due to VP Shunt
https://www.ncbi.nlm.nih.gov/pubmed/16156233
The pain was so excruciating and yet the Drs here did not seem to have a clue what was causing it so I reached out online. Eventually finding Braintalkcommunities.org
I thought I should share this with you.
http://www.braintalkcommunities.org/showthread.php/2414-PLEASE-HELP-SEVERE-abdomen-and-shoulder-pain-after-VP-shunt
I would not wish that kind of pain and discomfort on a worst enemy.
We have more questions than answers.
Our experience has left us with more questions than answers and has motivated me to want to help support families that may have been affected by brain injuries.
I hope that by sharing just some of the experience with you it will make you aware of Hydrocephalus.
I dedicate this to my wife Cynthia, our two wonderful children, my loving parents, Brian & Wendy and my two incredible sisters, Naomi & Emma.
