Homeward bound.

We had only one hour to pack before our taxi was arriving to take us to Dulles airport. In theory I thought I would have a spare empty case on the return trip as I travelled with a case of food however this soon filled with pillows, neck braces and medical supplies I had accumulated whilst in Washington.  Why couldn’t it of been handbags, clothes and perfume!!!

The taxi soon arrived, I was still trying to peel my support stockings on.  These are fantastic for any long haul flight but especially for those with POTS who have difficulty getting there blood to pump back up to the brain.  I did look like I had mannequin legs though.  I felt quite wobbly walking out to the taxi, everything was so rushed I think adrenaline was getting me through. We said a teary goodbye to my parents, I really did find this upsetting as I wanted to end the journey how we started it, together. The journey wasn’t too bad to the airport. As we changed flights so quickly we didn’t book special assistance which proved difficult in the airport getting my wheel chair, myself and all our bags through check in however we managed. Once checked in we went through security, what an episode that was!!! When you’re in a wheel chair you are pushed through then your wheel chair is searched, I was searched and neck brace swabbed it took around 10-15 minutes!! I must have a suspicious look about me !! We then headed up to the lounge where we waited to be called for the flight. I rang my brother and sister in-law to explain what was happening. I sat back on a chair with a cup of tea, exhausted and struggling with my vision which I had/have since surgery.

Our names were called and Nick wheeled me to the aircraft. Not long after boarding a lovely member of staff came over and said he would be looking after us on the flight and should we need anything at all just to ask. I was a little teary on take off as I wanted my parents to be with me and didn’t like the thought of them back in Washington, it didn’t feel right we weren’t altogether. I remember looking out of the window listening to the same song I did when we took off from Dublin five weeks before not believing this journey was coming to an end. It felt surreal. Muscle spasms and headaches prevented me from sleeping during the flight and due to numerous food intolerances and gastro issues I didn’t eat on the flight. I watched Nick as he tucked into food I could only eat in my dreams now. I tried to get as comfortable as possible by making a little pillow den and lay flat to take the pressure off my head and neck.

 

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We soon landed in Dublin, the flight was just over an hour faster on the return leg due to wind direction. As always the care with Aer Lingus was outstanding, I couldn’t recommend them enough. It was around 4.30 am (U.K. time) I was absolutely exhausted. My vision was making it difficult to navigate through the airport to the arrivals gate. Waiting at arrivals was our friend Rich who very kindly arranged again for us to have a few hours at his friends flat just around the corner from the airport for me to be able to get some breakfast and lay flat before our Dublin-Manchester flight.

Back at Rich’s friends I attempted to eat some cereal which was a sloppy affair, I couldn’t open my mouth that wide and food was sticking in my throat. I actually felt very nauseas so gave up the cereal war and tried to rest my body. The muscle spasms had totally kicked in by this stage and came with no warning, some so strong they through my jaw out and visually made my face jerk. Absolutely no fun at all. Nick was walking around the room trying to stay awake, we hadn’t slept In 24 hours. I do okay without sleep as I’m used to it but Nick is definitely a man that needs his sleep 🙂

A few hours had passed and it was time to head back to the airport for our connecting flight. We had already checked our bags in as we came off the Washington flight so it was just a case of going through security (again). We said our goodbyes to Rich and headed through security. Once through we headed towards the gate whereby they were boarding people onto the bus. As I was in my wheel Chair I got priority boarding on the front where I had a little giggle with the driver. As we arrived, the plane was the same size as last time – a coach on wheels !! The flight back was bumpy and both myself and Nick felt a little queasy. Once we descended into Manchester I had a few little butterflies, home we were finally home. I made it.

The journey back home was rough I felt very sick in the taxi after all the travel and dizzy but when we pulled up outside our home I cried. I cannot put into words the sheer relief I felt that I had made it and I was finally home. I had missed our home so very much. Nick opened the door and my little man Colin the cat came downstairs and was greeted by a weepy mummy giving him lots of cuddles. He had been well looked after by Nicks sister Michelle, so much so I don’t think he missed myself or Nick a jot!!! I feel the need to share a little picture of my Colin, he does not always look as angelic as this!!

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It was unbelievably nice to be home and true to form the first thing I did was have a good old cuppa and then plough through my NHS letters.

We haven’t managed to catch up with all our friends since returning as things haven’t been easy at all. So what’s happened since returning to the U.K. and what does it really feel like to have rods and screws in your head and neck?

The weeks following surgery

I have no recollection of getting back to the rental. I’d say my first memory would be laying in bed with ice packs on the back of my head watching friends. A very productive recovery in my eyes, there is something so comforting about friends you almost feel a part of it when watching or perhaps binge watching 10 years worth in two weeks does that to you !!
I recall utter distress trying to get myself out of bed, my head felt so unbelievably heavy to lift I had to hold the back and brace myself counting 1..2…3…whilst pushing myself forward. No one can prepare you for this weighty feeling and the fear your head is going to be that heavy forever plagued me quite often. It was such an unnatural and uncomfortable feeling.
I was unable to do much but rest in bed with many an ice pack, hot water bottle and Netflix. I had my own en suite, a lovely comode in the corner of my bedroom so getting to the toilet was easier . Not long after being back at the rental we had to return to the hospital as I was having trouble swallowing (still am) and we also noticed spots on the back of my throat. I am unable to remember the Journey back but remember sitting in my wheelchair in the waiting room fighting away the tears as it was so painful to just keep my head upright and that was in the brace. I felt truly dreadful. My mum came in with me and we saw two of Dr Sandhu’s nurses who checked me over and said I had a throat infection and prescribed some anti-biotics, I burst into tears in the room I just felt so unwell and in so much pain. I wasn’t taking the pain killers I was meant to take as my gastro issues were so bad I knew the tablets would make it even worse so I was only taking muscle relaxers and paracetamol. Both nurses said there was no wonder I was mentally and physically drained on no pain relief the first week of leaving hospital but I was adamant I could get through, not out of heroism, simply to try and avoid any further gastro flare ups which can be equally as debilitating as fusion pain. Everything with my health is a fine balancing act.

A few days after being home I attempted a lap of the landing, this picture taken below shows me walking with the frame, I have absolutely no memory of doing this walk. I’ve heard it was a big improvement from how I walked in hospital.

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This picture was taken a few days later walking without the frame of which I do remember. I recollect my head feeling so heavy, like it didn’t know where it was meant to be in space knocking my balance off but it was a big achievement to walk unaided.

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I remember these little walks taking so much out of me that I had to get back into bed. Bathing was equally as exhausting despite the fact my mum had to help me bathe. I couldn’t have asked for better carers my Mum, Nick and Dad all looked after me so well. My mum was never out of her apron with the kangaroo pouch as she nick-named it every-time she came upstairs there would be a snack, an ice pack or something stored in it for me.

After a while I started to venture downstairs navigating the stairs with the help of my Dad.  We set up camp on a chair in the doorway so I could feel the sun on my face and fresh air. I only managed short stints but it was lovely, each day we increased the time I was able to tolerate holding my head upright for. I made it into a mini challenge everyday. We then began doing walks with either my Dad or Nick across the street with the walker and then with my cane and holding onto them until eventually I walked to the local park (5 mins away) and was able to sit on the bench in the sun, granted only for 10 minutes as the pain was too great, I felt very unsteady and shaken but it was still an achievement none the less. This picture of the sun peeping through the trees was taken the first time I made it to the park.

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Frustration with myself soon reared its head of how slow I was at doing menial things. I knocked many a cup of tea off my side table as I couldn’t turn my head to pick it up. I couldn’t open my mouth enough to fit a tooth brush In to begin with due to muscle tightness and spasm. I wasn’t allowed to bend down to pick things up and all my movements were slow and unnatural not to mention painful. I desperately sought the fluidity of my movement again. It became apparent that when coming to the end of a drink I could not tip my head back to get the last part of the drink so in came the straws. This was all going to take some getting used too and I hadn’t even got into first gear experiencing my new neck mobility and range of motion (still haven’t).

Two weeks had passed, it was time for my follow up with Dr Sandhu back at the hospital. Dr Sandhu took my steristrips off and was happy with how the wound was looking both on the neck and where the rib was removed.

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We discussed some issues I was having with my vision and swallow and then went over some general aftercare for the next 3 months of which time I’ll require a scan to see how the bone is fusing.  Dr Sandhu pulled up some images of the hardware and was extremely happy with the positioning.  He answered my many questions regarding healing, muscles, pain, movement, feeling the bolts in the back of my head and much more, Im sure he thought he was on question time!!! He asked for us to arrange another appointment with him before we head back to the U.K. but so far he was very happy with the progress I was making and how well I was managing the pain.

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A day or so after my follow up I started to develop severe POTS symptoms, my
Blood pressure plummeted and heart rate high. My gastro system flared to an unmanageable degree and i was in a great amount of pain eating the smallest of meals. I wasn’t coping well at all, it was far too much hitting me at once. Over the course of days it became increasingly difficult to stand without feeling like I was going to pass out, my heart would pound and my legs were like jelly.  I increased fluids and salt intake which made little difference. We began talking about the possibility of coming home a week early and getting back to the U.K. as medical bills could have escalated if I was to be admitted which we felt was pretty  imminent.  Our friend liased with our airline and managed to get the flights changed for myself and Nick but sadly not my parents. We had 1 hour to pack our bags before we had to leave for the airport.  This was extremely emotional knowing I was leaving my parents behind as we had started this journey together and I wanted to finish that way. I hadn’t been upright for any more than an hour since fusion surgery, this was not to be an easy journey ……

*For those reading my blog awaiting fusion surgery I will soon add a piece of what I found helpful before surgery and during my recovery updating as time goes on in my recovery *

A Diary of HDU, time lapses and all !!!

Ideally I would have liked to have given a full and in-depth account of my time on the HDU however my memory does not serve me well at all. I think the combination of pain medications I was on had an effect on my memory as I can only remember snippets of each day. Nick stayed every evening and my parents everyday, well so they tell me!! I was that gone at times I wouldn’t know who was sat beside me. If you’re reading guys……I know you were always there!!!

Wednesday 13th September-

I was transferred to the High dependency unit around 10 pm, apparently I had somewhat of a comfortable night, waking on average every 15 minutes and pressing the pain pump. I vaguely remember the pain waking me and with being in HDU the room often being busy with staff putting things in my IV’s, but no real specifics the first night.

Thursday 14th September-

I recollect the pain being pretty intense and repeatedly saying “if I knew it was going to be this painful I wouldn’t have had it done” now I was still off my rocker on the medication but the pain was very real. The staff increased the dosage in my pain pump as I had asked for a smaller dose to start with due to my gastro issues. I was wheeled for a routine x-ray early doors and I really do remember giving off about the pain as we went over the bumps of the elevator in the bed and when asked to lean forward for a board to be placed behind my head I quite literally couldn’t move my head it felt as though I had a dumbbell in the back and staff had to pull me forward to place the board. I had little interest in eating or drinking anything and continued to suck on ice chips. I was struggling to swallow quite severely which was quite frightening. Dr Sandhu was called and he immediately attended, I vaguely remember seeing him and him ordering an emergency CT just to ensure the fusion was in place as sometimes if fused too far forward this can impinge swallowing. I have zero recollection of the CT scan. The swallowing team came and assessed my swallow, again I have no recollection of this. I was placed on puréed food to be reviewed the following day. I didn’t eat anything, I had no appetite and wasn’t really with it half the time. I vaguely remember trying some cranberry juice and apple sauce and having a serious discussion about how apple sauce should be consumed with pork and not on its own out of a tub!!! Sponge swabs and ice chips it was. Dr Sandhu was more than happy with the CT scan and the positioning of the hardware, the swallowing was put down to swelling and muscle spasms. I am still having issues with my swallow now so were monitoring it and at times the spasms are knocking my jaw out.

Friday 15th September –

Again a total blur, it’s a good job I’m not writing a novel about this hospital stay with the amount of memory lapses and gaps but I have to be truthful. My parents said as soon I pressed the pain pump within minutes I would be asleep. I do remember discussing with the nurse my love for cups of tea, it was even on my notes which I thought was lovely and very personal. Happy Friday people!!!

Saturday 16th September-

Another hazy day bar one significant event that got my attention. The catheter had been removed of which I have zero memory of, it then got to the 5th hour and i hadn’t managed a wee. My wonderful nurse Brian hadn’t long been on shift and asked me if I was Urinating okay since catheter removal. I informed him I hadn’t been, he came over and my stomach was quite distended. Then came quite a frightening rush of people and a portable scanner which showed I had over a litre of urine in my bladder. Before I knew it my bed was being tilted back and I was being told the catheter needed to go back in. I was shouting for my mum, who had gone back to the rental at this point as I felt a little scared as I knew that often if the bladder doesn’t work it can be an indication of tethered cord which can become more evident after fusion surgery so I was concerned this was at play and id lost function of my bladder. The catheter was placed back in which was eventful as I have a stricture in my urethra so you can imagine how delightful it was!! Soon the bag was filling up and the pain and swelling in my tummy eased. The nurse said there was a strong possibility this happened because I was still on the PCA pump which can effect the bladders functioning whilst on it and the plan was to stop the PCA and then remove the catheter tomorrow.

Sunday 17th September-

I remember being a little more alert on this day and took the brace off for the first time and got nick to take a picture so I could assess the undercut and rib situation !!!

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I had a new nurse called Holly who was wonderful, literally lovely. I was sat in the same position for so many days as I couldn’t bare to lay down flat with the pain in the back of my head I’d developed a sore on my coccyx and it was so painful, Holly disappeared and came back with an inflatable waffle type cushion which she placed underneath me which took the pressure off my coccyx. I was removed off the pain pump and told I would be going onto oral meds with the view of taking the catheter out to see if I could pee myself. I was concerned about oral meds due to my gastro issues so we agreed I would have the stronger meds through my IV in my wrist to bypass my stomach. The catheter was removed again and it was a wait and see if I could pee. I felt under pee pressure!!! I remember my first pee on the wonderful commode, who knew how monumental peeing in a bucket on wheels would be!! My bladder worked yipeeee. To make my day even better the nurse brought in a sandwich bag of Yorkshire tea bags that the nurse on the previous night shift had brought in after our discussion about my love for tea. He had wanted to bring me a little bit of home, I almost cried, such a lovely gesture, what a guy.

Monday 18th September-

I could definitely tell the difference being off the pain pump, it attacked the pain at speed and in short bursts so you knew you had 10 minutes before you could press it again. Now I was on IV meds i could definitely notice the pain level increase. I managed to waddle out of the bed to the recliner chair and remember my head feeling so heavy I just wanted it resting against something at all times. Late morning we were told I would be discharged today on the premise the physio was happy I could navigate around. She came round to do her assessment, once she saw me attempt to walk and once she knew I hadn’t properly walked since before surgery she got me a walker. I really struggled to walk, I was very weak, my legs like jelly and they felt like they would buckle from under me. I walked like Bambi I couldn’t keep my head straight as my head felt unbelievably heavy. No one could have prepared me for that first walk, I cried and felt quite worried that my head would always feel this weight as I felt I couldn’t carry it. It was like learning to walk again and I didn’t feel I was going to manage it. Next were the stairs, I had to prove I could navigate steps before I was discharged. The physio supported me in side stepping the stairs as I couldn’t look down at them and told me to feel for each step whilst having someone in front and behind me for support. I then had to do a lap of the ward. Heres me after completing to ward lap-

 

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The physio cleared me on the proviso I had a walker to take home with me and a commode, yayyy always wanted my very own en suite !! We then sat for a couple of hours waiting for discharge papers, medications, the equipment and spoke to our lovely international liaison officer. I felt quite nervous leaving the hospital, a sort of insecure feeling. A wheel chair was brought up for me and we said goodbye, i remember this picture below being taken as once I left the hospital and went outside I couldn’t see properly, it was like my eyes wouldn’t adjust to the light.

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I cannot remember the journey back to the rental or going into the house!!

 

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”.