The day of my neurosurgery

After a restless evening of sleep I awoke, it was D-Day. It felt very surreal that everything we had worked for and focused on for the last 18 months was finally here. My family didn’t sleep too well either, it was around 4 am when the house started to bustle with noise from people having breakfast, showers and packing etc. I had attended my pre-op the previous day, being an international patient the majority of testing was done back in the UK and sent over so it was just a case of testing my blood type and running through some final health questions and informing me of what to expect on the day. We were up super early as my surgery had been brought forward from 12 pm to 8 am which suited me as it meant less time without food and fluids, two aspects that can play into a POTS flare for me.

Our taxi arrived at 5.50 am, it was still dark outside and the street quiet. The hospital was only a 5 minute care ride away from our rental which was ideal for Nick and my parents who would be travelling back and forth for the time I would be in hospital. We arrived at the surgery entrance and checked in. It was quite a large room sporting the obligatory fish tank for relaxation. Given it was so early the room was full of patients awaiting various surgeries that day. I was given my wrist band and then informed the surgery schedule had changed again and my surgery would now be 10 am and would head down to the holding ward at 8 am, we had 2 hours to kill and I couldn’t even have a cup of tea!! We sat at the far end of the room, we were all quite quiet, I could tell everyone was nervous, myself included. I felt a little weepy so attempted to distract myself with my music which as mentioned in previous blogs has become somewhat a saviour to me over recent years. I then became quite restless and fidgety and went to sit outside the hospital on the bench and tried to focus myself and my mind on what was ahead. I was very conscious not to become too panic stricken at this juncture and worked on the relaxation techniques I had been practising during the lead up to surgery. Dad came out shortly after and sat with me with the sweetest smelling coffee, I don’t even drink coffee now due to my various issues but when I smell it I can almost taste it. I proposed my dad and I pull up a taxi and make a run for it, as tempted as we were as no parent wants to see there child go through such a major neurosurgery we shed a little tear and decided doing a Houdini act was not one of my better ideas. We went back inside to wait, a nurse came over and explained that during my surgery my family would be in the relatives room and able to track the progress of my surgery with a unique ID number I was issued on screen and a staff member would come to give regular updates. Before I knew it another nurse approached saying the holding ward was ready for me, I had decided to take my mum to sit with me for the 2 hours before surgery. I gave both my dad and Nick a hug and told them I loved them. They both wished me luck and told me how brave I was. I could see they were both holding back the tears, as was I.

The holding area was essentially a ward with numerous bays and beds. This was the area where patients waited right before surgery and met with there surgeons, had IV lines put in etc. My allocated nurse was called Jackie and I could not have asked for a nicer nurse, so warm, bubbly and kind I could see why she worked with patients who were imminently heading into theatre she had just the perfect ammount of humour and warmth to add ease and calm to the proceedings. Jackie asked me a handful of health questions, did some final checks and explained Dr Sandhu and the anaesthetist would be round before my surgery. Jackie handed me a lovely gown, socks and hat to change into. Once changed another nurse came and placed an IV, I have notoriously rubbish tiny veins that often collapse so it was placed near the wrist which was a little uncomfortable but nothing major. Due to my POTS they placed a fall risk band on me and an allergy band for my allergies. Whilst waiting I started to cry, it was strange as I wouldn’t say I was in extreme panic mode which I thought would happen but I just felt overly emotional and frightened. Mum cried too and we gave each other a hug and again I asked if we could just leave and escape !! No-one was taking me up on this great escape !! I spoke to Mum about a lot of my worries and concerns, there is nothing like a mothers love and comfort no matter how old you are.

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Dr Sandhu then appeared from around the curtain and shook both mine and my mums hand. He had just come out of a lower neck fusion surgery and I told him to have a rest before he started work on me to ensure his hands were nice and steady, we joked. Dr Sandhu explained the surgery again and asked if I had any questions. My main question for Dr Sandhu was the repositioning of my skull. Dr Sandhu then took my brace off and made a few markings on my neck and said he would see me soon and everything would be okay. I found him very calming and instantly felt more at ease. Next came the anaesthetist who was quite frankly amazing, we discussed my issues with anaesthetic and vomiting, my pots and how my heart rate may become erratic and blood pressure low and she instantly put my mind at rest. I told her my fear of being awake during surgery which stemmed from a previous experience whereby after my stomach surgery I was In recovery with the intubation tube still down my throat, my brain had woken up however my body hadn’t and I could not move an inch with no means to communicate as I felt like I was choking on the tube. The anaesthetist explained that with the nature of my surgery not only will she be next to me the whole time monitoring me but I will also be plugged into a navigation system that also does her job. She went and got me a scopolamine patch for behind my ear used to treat post surgery nausea and informed me she had just got out of a surgery whereby the patient had POTS. I could not have asked for a nicer anaesthetist. She asked if I wanted a pre- med before going into theatre as most people do to settle the nerves and so you’re not really aware of heading in, ever the control freak I declined and said id rather enter awake as I don’t like the whole semi conscious state situation. We filled in some more forms together whilst some students came and observed me and did a neuro exam. With the hospital being a University hospital it is full of students training and eager to learn. The two students would be in my surgery observing. They were both keen to talk about EDS and the instability in my neck.

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It was then time to head down to theatre, I gave mum a hug and got myself properly into the bed. I was wheeled to the theatre door and at this point I said goodbye to mum, we told each other we loved each other and Mum had to take my glasses off me at this point which I didn’t like as I really can’t see too much without them. I was as calm as I could have been really, in fact I surprised myself at how calm I became. I think this also made it easier for my mum when she left to go and sit with my dad and Nick.

As the double doors opened into theatre although without my glasses my vision wasn’t the best I felt like I was in a real life episode of ER. The room was quite big, sterile smelling and I remember huge spotlights on the ceiling, big monitors and a bed quite high up in the middle of the room. The anaesthetist I had met came over to me and comforted me and another came over and explained some medicine would be going through the IV which may burn a little after they had run some saline through. I was asked to hold an oxygen mask over my mouth and nose and breath into it. I remember seeing a nurse at the bottom of the bed and thinking please wait until I’m out before you put the catheter in!!!! The last thing I remember was saying “please look after me”.

Unbeknown to me as I was out cold in theatre my parents and Nick were in the relatives room. It came up on screen that the first incision was made at 12.10 pm which meant I was being prepped whilst asleep for just short of two hours before any surgery began. This was to set my head in the right position to be fused, set me up on the neuro navigation system, position my head In the clamps and much more. A staff member came out to inform my family all was going to plan in theatre. My family just waited in the room throughout the duration of the surgery and as it was heading into the 5th hour they were wanting to hear I was out as they knew the expected time of the surgery was 4-5 hours and low and behold Dr Sandhu was stood before them in his scrubs and shook everyones hands reporting to my family all went as well as it could have gone. He informed them I was in recovery being woken up and a nurse would come for them when I was ready.

Now for me recovery was a blur. I remember briefly seeing the international liaison officer who came to check on me. Apparently Nick came down first to see me of which I cannot remember, he gave me ice chips and wet sponges and apparently I was giving off about a picnic blanket !!! My dad then came, again I don’t remember and then my Mum. Apparently Mum stayed with me the longest to try and get some medication down me as I couldn’t swallow but I have no recollection of this either. I am not used to medications so I think the cocktail I was on were really taking effect. I do remember complaining of a lot of pain and I couldn’t move my head an inch and a nurse explained I had a pain pump and when the light was on green to press it. After a good few hours in recovery I was transferred to the high dependancy unit, again I do not remember this or anyone being with me or this photo being taken below. I do not even remember any feelings of relief or elation that the surgery was over. Apparently at times I would mumble and then I would drift off again.

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Then came five days on HDU………..

My escape before surgery 

It was essential in the days leading upto surgery that I kept myself occupied. I could not do too much however we managed to get out for an hour here and there in the wheelchair which was heaven. 
A place we soon discovered was ‘ the waterfront’ which on first visiting instantly became my “go to” place. I found myself gravitating to the steps which led into the water where the ducks would gather. Just to be able to be outside, hear the relaxing sound of the water and ducks splashing was truly heavenly, it often brought a tear to my eye as I really took my surroundings in. It became my all time favourite place and I found myself very relaxed when there. I would sit and just watch the water whilst listening to music. It was so peaceful it gave me the time needed to think about the surgery, the journey ahead and reflect on the journey so far. 
My head felt cluttered regarding the surgery. Most people go into surgery and ultimately come out cured or significantly better. The main aim of this surgery was to save my life, stop my neck from dislocating, stop the artery and brainstem from being compressed. Ultimately saving my life and enabling me to move again without risk of falling over and causing paralysis. Stop the symptoms in there tracks before they became even more disabling and serious. Having the neck brace as a tool when needed instead of it being a necessity. Any symptom improvement was always going to be a bonus from the long term damage already done and the recovery was going to be mammoth over the course of 12 months plus. There were fears of getting through the surgery safely especially with it being in such a crucial part of the body to developing further instability in my spine over the course of my life to the day I’ll be weaned off the brace and have to learn to do quite basic things again with little head/neck movement. We all in life want a quick fix, myself included and sadly this wasn’t going to be that. I had so many day dreams of waking up ‘cured’ and symptom free, I dreamt of doing everything I had missed out on over the course of many years but I also had to bring myself back down to earth and remember I had EDS, dysautonomia and other health issues that sadly weren’t going away. On the other hand I also wanted the opportunity to live and be able to fight those illnesses as best I could. I wanted a chance at a life again. 
Two days before surgery I sat by the water reflecting on the past two years from the loss of my job, becoming virtually housebound and thinking how much I had lost. I do find it too painful to talk in great detail about this as it’s all very raw. I then as always counteracted those thoughts with the hundreds upon hundreds of people who came together and supported my campaign, the amazing fundraisers, hard work of friends, colleagues and people I had never even met before. Receiving the warmest messages of love and encouragement that pulled me through some very dark days. Human kindness at its finest. 
I started to become mentally focused, I’d be lying if I said I didn’t cry, panic and have 101 fears running through my mind but strangely at the same time they were accompanied by an air of peace and rationale. I was ready for this surgery and the chance to move forward with a secure head and neck!!! 
It’s very important to me to have an escape, often over the course of the last few years it’s been my music I’ve fallen into or imagining going to various places in my mind and almost getting lost there. I was so fortunate to find this beautiful place that at times made me feel like Ali again, it gave me such comfort and peace to enable me think. It’s a place that will be etched in my memory forever. 

Meeting my neurosurgeon for the first time. 

We had only been in Washington a few days when it was time to meet my neurosurgeon, Dr Sandhu for the first time. I was still jet lagged and struggling with adjusting to the time difference but tried to just roll with it and sleep whenever I could really. 

It was Wednesday 6th September, We all took a taxi down to Medstar Georgetown University Hospital. My first thoughts as we approached the hospital were that of the sheer size with different entrance numbers depending on your purpose for visiting. The site was huge with many campus’s with it being a teaching hospital. 


*A very small segment of the hospital* 

We went up to level 7 of entrance 1 (physicians offices) and checked in and waited to be called. Whilst waiting I had numerous forms to fill out, my vertigo was still bad from the journey so i felt like the paper was moving up and down which made for interesting handwriting!!

Initially I was called by the nurse who was lovely and took my blood pressure, weight, height and asked me some general health questions whilst documenting them on the computer. 


Not too long after I met the man himself. It was lovely to finally meet the man who would soon be performing such a major surgery. I maybe biased but I can quite honestly say with confidence that Dr Sandhu is one of the nicest consultants I have ever met, he is extremely polite, non-assuming, very calming and down to earth. Although the topic of conversation was serious it was an absolute pleasure to talk with him. I had my usual 101 (22) questions all written down and prepared and he was more than happy to answer each and every one. 

We discussed the surgery in more detail, I am very much the type of person that needs to know the details. Dr Sandhu initially pulled my imaging up on the computer and explained how C1 and C2 are dislocating and over rotating and how this compromises the vertebral artery and how my clivo-axial angle was acute causing compression of the brainstem which meant I warranted a skull fixation -C1-C2. Dr Sandhu discussed the method which was his own he had designed. The hardware really is like mechano only much more expensive than at Toys ‘R Us and can be adapted and tweaked for individual anatomy. The most common are T- bars or two rods at the back of the skull but quite often surgeons will design there own method which they have found works well and will use that. Dr Sandhu has designed the ‘grappling hooks’ method which essentially was like two bolts either side of the skull, less hardware but felt they fixated to what is very thin bone in that area well. Dr Sandhu proceeded to show me on his phone the method on an open skull during a surgery, I am a little geek at times so i was fascinated by this and not at all squeamish . Shame I didn’t show such enthusiasm back in the day in biology and I might have passed the exam!! We discussed length of surgery, the potential for ‘surprises’ during surgery especially with having EDS and the risk of excess bleeding due to fragile tissue. I had many questions about other possible complications afterwards like developing tethered cord and instability in other areas of my spine. The truth is this is very much a possibility and all I can do is try and keep those areas as strong as I possibly can and keep an eye on it with symptom tracking and scans. Dr Sandhu explained he would take rib from the back and place this over the fusion with the main aim for this to take and my own bone to grow which is then a successful fusion as you need your own bone to grow as you can’t rely solely on the hardware. We discussed a little about what would happen the morning of surgery and how I would need to arrive 2 hours before and I would be taken to a ward which is almost like a holding area where all patients imminently awaiting surgery go. Here I will be marked out by Dr Sandhu, meet the anaesthetist, possible student doctors and have IV’s placed. I discussed some of my fears regarding my stomach with Dr Sandhu as my gastro system is so shocking, he was extremely reassuring that we would find a combination of medications that would work for my stomach and use maximum anti-nausea medications to try and combat sickness. He was extremely well versed in EDS patients and POTS so knew all the things that could potentially arise. I would say I was in over an hour asking various questions and airing my worries and anxieties, never feeling rushed and always feeling understood. 
At the end of the consult we shook hands again and I said I would see him on Wednesday, Dr Sandhu assured me everything would be okay. I trusted him entirely. 
Seven days to go …….

Manchester to Washington 

Well……what a journey with a long way yet to go. It’s been some time since my last blog post and so many things have happended I am going to attempt to add some as-semblance of order and take you on a little retrospective back over the last few weeks when I feel able.  I guess beginning with the journey is as good a place to start as any. 
On Sunday 3rd September we made the trip to Manchester airport. I hadn’t slept a wink the previous night, I resigned myself to the fact no sleep was taking place as the nerves were too great. I had no idea how I was going to make such a mammoth journey in my current state of health, I knew how unwell getting to a local hospital appointment made me but at the same time I had worked so hard on my mindset leading up to the journey that I felt very focused on the task in hand and that is how I looked upon the journey- a task, a task with numerous phases and challenges within it. 

Phase one was making it to Dublin airport where we would stay overnight ahead of the “biggy” to Washington the next day.
We arrived at Manchester airport safely and said goodbye to my brother and his lovely wife who had kindly driven us. I got quite emotional saying goodbye and had a good cry clinging onto my brother. We headed through to airport security. There was none of the usual excitement you’d associate with the airport before embarking on a holiday, this was a mission. I was in my wheelchair due to my vertigo and it was a new experience going through the airport and customs this way. I bleeped (as always) at the scanner and was wheeled to one side to get “checked” then the task of trying to gather all the hand luggage the runner spits out at the speed of light, I felt frustrated I couldn’t do this myself and look after my own belongings. It was all too fast for my head and my body to keep up with. 
We soon got into the airport and had a cuppa, which is my answer to most things. I think that’s the Irish in me. I was nervous for the flight, although such a short flight I am not a keen flyer at all. It’s more the fear of not being able to get off the aircraft than anything else. My dad took me over to look at some of the planes on the runway, whilst we waited for our gate to open. Eventually the gate opened, I was struggling being upright by this time and was wanting to lean my head against something to take the weight off. Nick wheeled me to the gate and I remember my first thoughts were that of dread!! This was not a plane before me this was a coach with wings i thought!! My dad made a joke the Tiger Moth plane he had been in was bigger. I think given the time of day and the few people on the flight they were using the smallest plane!! I remember commenting on the 4 steps up to the plane and then getting stuck in the toilet. As soon as I got to my seat I put my headphones in and got myself in “the zone” I was nervous but this was the first leg of the journey and in 50 minutes I’d of made it. The plane taxied the runway and quickly took off which admittedly was a little bumpy but given it was a coach with propellers it wasn’t as bad as anticipated. 

We soon landed at Dublin airport and collected all our luggage. We were greeted by our good friend Rich who we had arranged to come over and help get me and the luggage to the airport premier inn and help with food. As I’m gluten free and my diet consists of only a few foods it makes eating out very awkward. Luckily we had arranged in advance for Rich to take me over to his lovely friends house to cook some gluten free pasta to ensure I had some food for dinner and breakfast. By this time I was exhausted and went to lay down for a few hours flat whilst my family went for some food. My dads cousin, his lovely wife and there daughter from Ireland had arranged to travel to meet us at the premier inn which was just lovely to see them all and have a lovely cuppa. It meant an awful lot they had travelled over to Dublin to wish us all well. That night I didn’t sleep well, the worry overtook me a little at this point with lots of tears for the flight to Washington. I am not a seasoned traveller and had never travelled that far before well , let alone in the condition I was in. I was scared of getting unwell on the plane and being unable to get off. As the light peeped through the curtains it was around 5 am I got myself up and ready. A few hours later Rich drove myself and all the luggage to Dublin airport and my Parents and Nick shortly followed. Luckily we had arranged special assistance which meant being able to sit in a quieter area of the airport before joining a different queue to check in, I highly recommend this if you are travelling in a wheelchair with medical supplies. We were directed up to airport security, before going through we said goodbye to Rich who had been so helpful and then through the gates we went. My wheelchair was scanned as I went off again. We didn’t have too much time for a rest as we then had to make our way to customs, we chose to fly from Dublin for this very reason that you can do all the customs and essentially gain access to America in Dublin which would be speedier that doing this over in Washington. We went through a second batch of security where everything had to go through again including shoes and my neck brace was swabbed and wheelchair scanned. We then joined another queue this time my finger prints were taken and I was asked the reason for visiting the United States, “surgery” and provided my Esta and medical information, my photo was then taken and i was stamped. By the time we all got through it was time to head to the gate as the plane was boarding. I was nervous but also again very much in the zone, I had a task to do and it was going to get done. When boarding the flight I was helped on board and the Aer Lingus crew were fantastic with there care and consideration. Myself and Nick were in business class, I could not remain upright for anything longer than 30 minutes without issues arising so I needed to lay flat. Again the headphones went in and I tightened my brace in anticipation for take off. The flight seemed to board very quickly and began reversing onto the runway I remember thinking to myself “Well Ali, this is it. You got here missy there’s no going back now”. The plane was on the runway and away we went. There was a little TV where you could track the flight. I lost count of the amount of times during the flight I flicked onto this to see whereabouts we were and more importantly how long left. I did find the flight difficult but being able to lay completely flat made all the difference. Around the 5 hour mark I ran into more difficulty with a severe headache and pain I took my medication and lay back down. I sadly couldn’t participate in the food on the plane but had brought some cake and bits and bobs to tide me over. I drank a lot of water as flying dehydrates the average person and with having POTS you require even more. As well as my wonderfully sassy flight socks which felt like they were cutting off my blood supply I took my doctors advice and took regular walks through the cabin (usually for a pee from all the water)!! I more or less stared out of the window the entire journey listening to my music thinking about what was about to happen and that it was finally happening. It all felt very surreal.




After around 7.5 hours we touched down at Dulles airport. I shed a tear when disembarking and everyone said how proud they were. I was suffering quite badly with vertigo at this point which was unsettling but expected. We made our way through the huge airport to baggage collection and onto airport travel. It was around another 1.5 hours before we reached the house. I was carried out of the taxi and put into my wheelchair.

As I looked up at the house, teary, in agony and with no concept of time I thought to myself “I’m here, I did it. This will be my home for the next 6 weeks”. 

 

A Real Life bobble head

We got off the train at Euston station, severe vertigo rendering it impossible to walk. I could not see straight nor gage where the floor was. This was to be the start of many more attacks of vertigo, little did I know what the cause was going to be. My partner, Nick, virtually carried me across the station to a coffee shop where we remained until the spinning settled down enough for us to navigate our way to Medserina for my upright MRI scan. It was August 19th 2016.

Despite the multitude of symptoms I’d had over the years, headaches were never one of them. In May 2015 I began to develop the most excruciating pain to date. I had pains in my head 24/7, they ranged from pressure, occipital headaches/neuralgia, pulsating temples, frontal head aches, pulling back of my skull, teeth and facial pain. At times I lost my speech, my mouth would droop and my face go numb. These were headaches like NO other and the fact they were unremitting, I knew something serious was at play. Debilitating neck pain accompanied the headaches along with clicking, crunching and spasms. I became very aware of the weight of my head. Suddenly I felt like I was carrying a bowling ball on a tooth pick and my shoulders became equally as painful. It was terribly debilitating.
The next 15 months were spent in and out of A&E, neurologist appointments and testing. It was a long, complicated and traumatic 15 months, the worst time of my life. I will revisit this time again in my blog but at present its still too raw.

The oh so familair diagnosis merry-go round commenced, starting with a suspected stroke, due to weakness on my right side and facial droop then followed bleed on the brain week. As time went by and more scans were not showing the cause (as they were supine) the avenues of migraine, occipital neuralgia and hemiplegic migraine ensued. I had injections into my skull without anaesthetic due to allergy, all to no avail.

I was losing hope. I had no idea what was causing such pain but I knew living my life like this was not an option. I couldn’t carry on. As time went by the headaches increased in intensity, shoulder pain worsened and the ability to carry my head was becoming impossible. When upright I’d physically hold my head up with my hands at times. As strong willed as I am, at this point I felt I could not go on another minute. I was still employed but unable to attend work due to the severity of the symptoms.  I spent 3 months mainly bed ridden, feeling very isolated and alone. I was losing every aspect of my life, everything I worked for, everything I enjoyed, everything that made me, me was fading away and I didn’t know why.  My world became very small.

Over time I developed weakness down my right side, I was dropping items, severe vertigo, dizziness, vision problems, increase in nausea, my hearing changed, tinnitus, I started to forget words and have problems communicating at times.  I began choking on liquids and solids and found it increasingly hard to swallow. The list of symptoms increased as the months went by.  I had never felt as frightened as I did at this time.

It was a chance conversation with my Shoulder surgeon that put me on the right path. I’d had right shoulder pain for years and was told by many physios it was just a strain. An MRI scan revealed I had 2 shoulder tears (EDS for you) and I was referred to a surgeon. As well as my shoulder the surgeon was very interested in EDS, asking me about my various symptoms. I told him about the current symptoms and the impact they were having on my life. He immediately said it sounded like neck instability as the way I was describing my symptoms was almost identical to that of rheumatoid arthritis patients he had come across with instability in the neck. 

Once home I took to google, I came across articles on Craniocervical instability and the similarities were far too canny. I found a support group on Social media (they have proven invaluable) it became apparent from other sufferers and medical information that the only way to find Instability in EDS patients, due to the mechanics of why we have it is through an upright Motion MRI of which there was only one in the country.  My GP made the referral.

We arrived at Medserina and were taken into the waiting area. The vertigo was so extreme I had no idea how I would sit in a scanner for the next hour, but I hadn’t come all this way for nothing.  I sat and sipped on water trying to focus on one place in the room as it span around me. Nick completed the paper work for me and I signed.

Nick walked me to the scanner and stayed in the room with me. I was strapped into the scanner with a cage placed over my head. First of all, scans were taken in neutral followed by flexion, once I was flexed a bar was placed to support my head and to limit movement to enable a good clarity of picture, the cage was again placed and the radiographers left the room to take the images.  I then had to extend my neck and it was held in position.  It was very painful but I tried to remain focused to get the job done. Then came rotation both left and right. On rotation right I lost the ability to swallow, this frightened the life out of me.  I could not speak as I could not swallow, a groaning came from me and the radiographers ran in and released the bar. I had no idea at the time why that had happened. The scan lasted just over an hour.

We sat in the waiting area afterwards as I felt too unwell to get back to the station. Myself and Nick got chatting to a lady who felt equally as rough after her scan and it turned out she also had EDS and not only that she lived less than 10 miles from me, small world.  We exchanged numbers.  We left the facility after 30 minutes with my images on disk and was told the report would arrive within the week. The journey home was horrific. My head and neck agony after the scan, vertigo still lingering and now nausea.  It felt like the longest train journey of my life.

A few days later I received a copy of my report, it was clear from the imaging I had craniocervical instability. I did not understand everything in the report so I arranged a telephone consultation with Professor Smith, consultant radiologist.  Professor Smith explained that I had a range of motion in flexion and extension greater than 95 degrees and that instability was demonstrated in flexion and on rotation. He went onto say I would need a fusion surgery however this is not yet undertaken in the UK on EDS patients. I could not believe what I was hearing, it was 2016 not 1916!! The professor gave me a few names of world class surgeons, all based in America and said that UK/Irish patients were having to go for surgery over there.

Panic set in, how could I make it to the states? How could I fund such surgery? I read numerous stories of patients in the UK and Ireland having to fundraise to get over to America. One amazing girl had to sail as she was not fit to fly. I felt I was in a living nightmare.  I needed to get the advice of top neurosurgeons as soon as possible.  In the support group there were talks of another surgeon based in Barcelona who had recently undertaken a surgery on a fellow EDS’er.  More and more UK patients were heading over to consult with him, I felt at that time this was a viable option and we made arrangements to have a consultation over in Barcelona for November.  We also scheduled a Skype consultation with one of the worlds leading neurosurgeons in America for December.

It was only when we made the long and difficult journey to Barcelona to meet with both Dr Gilete and Dr Oliver (Europe’s leading skull based surgeon) did we realise just how severe my instability was and the risks involved…………….

A Zebra Life…but why the blog?

First blog post Ali…….NO PRESSURE!!

I guess at this juncture I should explain why I have chosen to blog, my reasoning behind it and what I endeavour to achieve by opening myself up in the public domain.

Since being diagnosed with EDS, POTS, CCI and AAI my world has become smaller, as my capabilities have deminished due to ever increasing symptoms. There is a constant tug of war between my mind and my body.  My broken body is unable to keep up with my minds desires.  With that comes a minefield of emotions whereby these emotions can and do detonate at any given moment.  The unprectitblity of symptoms and capabilities adds further explosive devices to the field and before you know it you’re gently tip toeing through each day hoping a device doesn’t set off.  Essentially each day is dangerous, unpredictable and exhausting.

Through blogging I would like to address the emotional turbulence of  living with a variety of chronic illnesses.  How I feel, how I manage these feelings or don’t in some cases, what are these emotions and what triggers them?

The journey to diagnosis was far from smooth. It was 10 years of constantly being let down, judgements, deflation, anger, upset, fear and exhaustion. There were many times over the years i felt like giving up, at times i lost hope.  I knew something wasn’t right, I knew my body did not function like that of the majority. We spent 7 years intensively going round in circles within the medical world. Sometimes my hopes were raised when something was found “This is it, Im going to get better” only for treatment to fail or have no effect on symptoms and back to the drawing board I went.

When you don’t have a name for your symptoms it makes it even harder for people to understand and to some extent believe.  I found myself keeping a lot of my symptoms to myself, I became a master in disguising my symptoms.  Socialising became increasingly difficult.  I could make a plan with the best intentions but have to cancel due to my health.  I often felt people didn’t understand or thought I was picking and choosing what i wanted to go too.  I began to stop socialising as it was easier than constantly feeling like you are letting people down.

Work became increasingly difficult and I found myself adapting my days, eating certain things at certain times of the day in order to try and reduce symptoms, napping in my car and shorter days. Every single part of my life had to be planned with military Precision, yet I still didn’t know why. I really gripped onto my job for as long as possible but in truth I struggled for a lot longer than I let on.  I loved my job, I didn’t want to lose it.

I hope that blogging will give me the platform to be able to reflect on the past from constant testing, people not believing me, trying to act normal and keep up with others, the loss of my job and at times what feels like the loss of my identity.

From diagnosis to beyond!!  I will never forget ‘diagnosis day’ from the trip, to the consultation itself to all the emotions that came instantly and thereafter.  The diagnosis finally gave me validation and the jigsaw was finally put together. Once diagnosed with EDS in some respects medical doors opened for me and in other respects it became quite apparent of the limited knowledge within the medical community of such a complex condition.  Another battle then began.

I would like my blog to be a true reflection on what living with EDS is like day to day, my experiences of testing, appointments, medical professionals and things I have learnt along the way. I would like to go back to diagnosis day and certain tests with the main aim of helping others who are facing similar.

The hammering as I like to call it!! Shortly after my diagnosis of EDS came what felt like an endless stream of further diagnosis’s within a short period of time.  I remember at the time thinking ‘how unlucky can one person be’ spending 30 years with symptoms and no diagnosis and then they don’t stop coming.

The diagnosis of CCI and AAI was my biggest blow to date.  I really did struggle and still do accepting this.  Having a potentially life threatening/altering condition gives you a constant unease.  Not just an unease of symptoms but an unease of ‘am i going to wake up in the morning’, ‘ am I going to die at 32’, ‘will I be paralysed’, all very real feelings.  A further blow came when it became apparent how the operation was not carried out in the UK on EDS patients.  The only one positive that came from this is that it opened a door whereby I have met THEE most amazing people suffering with the same conditions from all over the world.  Now that I am forever grateful for.

I hope my blog reflects what living with CCI and AAI first hand is like.  I would like to post about the current situation in the UK on this surgery and the position patients are left in.  I would like to discuss the importance of having a strong network of people that really do ‘get it’.

In October 2016 fundraising began.  I personally had a mental struggle with exposing my story and vulnerability.  It did not sit well with me to begin with and I felt very anxious at the time of launch.  The response has been phenomenal, breath taking and overwhelming.  So many people came forward from friends, family, old school friends, past work colleagues and total strangers and have organised the most amazing events, offered support and love.  I will never forget this for as long as I live and has been a huge driving force in keeping me moving forward.

I would like to blog about the daunting prospect of fundraising, everything it entails behind the scenes, media and the power of people.

Rods and bolts in the neck you say???  All being well May 2017 will see me and my family take the journey over to Barcelona to undertake the biggest surgery of my life.  I will be having my skull fused to the top two vertebrae in my neck.  This is a high risk operation given the junction of where the surgery takes place and the spinal cord and nerves involved.  The operation will be tough, the recovery long yet necessary to save my life and ultimately eventually give me some quality of life back.  I will be away from home for 5-6 weeks before its safe to return to the UK where recovery will continue.

Documenting this journey is very important to me as a reflection of hopeful progress.  I would like my blog to discuss in more detail what the surgery entails and my trip to Barcelona for consultation. After surgery my partner will take over the blog  for a time documenting first hand the experience.  I hope to blog thereafter.

In essence my blog will be a little bit of passed, present and future sprinkled in for good measure.  I really do hope you enjoy my blog and walk alongside me on this journey.

Much Love

Ali xxx