Deep breaths in and out as we taxied the runway, trying to keep my nerves in check. I hadn’t flown in years and knew it was risky with my condition due to intracranial hypertension. I’d already achieved getting to the airport and through check in, this was the next leg. Braced up I closed my eyes as we took off.
A few weeks earlier I had sent my images off to Dr Gilete in Barcelona for review. He had reported Craniocervical instability and recommended a consultation to discuss my measurements and findings further. The lead up to the trip was awful. I did not know how I was going to make it, I knew how unwell I felt going 5 miles down the road to an appointment. Weeks of nerves and military planning ensued.
Feeling the bumps of the wheels hitting the runway hurt my neck but at the same time a huge sense of relief came over me, I’d got there. I’d had a worsening pressure headache about one hour in from the altitude but nothing I couldn’t handle. We collected our bags and headed straight for a taxi to our apartment about 30 minutes away from the airport. Once we reached the apartment I was so proud I’d got there. Any kind of travel and movement is diabolical on my body. I break everything down into stages in an attempt to make it more manageable. I stayed in the apartment for the evening laying flat, my nausea was at an all time high. I went through the various questions I had for my consultation the following day.
Sat with a cup of tea I read my messages from people wishing me luck for the appointment. I hadn’t slept a wink, not a wink. Often adrenaline kicks in when I have to travel which is hard to switch off. Around 2 am I resigned myself to the fact no sleep was taking place and I lay on the sofa with a dim light on staring at the ceiling with the same questions running over and over – When did it all come to this? Why was all this happening to me ? I couldn’t compute the last 18 months.
We arrived at the hospital, the grounds were beautiful donning tall palm trees on either side. As we walked into the entrance we felt like we had walked into a hotel lobby with marble floors and the sparkly clean appearance. We were guided back to the villana entrance and made our way down the stairs to Dr Gilete’s consultation room. After a very short wait we went in. Dr Gilete shook our hands, he was a very warm natured man. We asked if we could record the consultation as I was unable to take everything in at present. This was not a problem. Dr Oliver then entered and we were introduced, again a lovely gentleman.
Dr Gilete guided the consultation initially asking me to discuss my symptoms. I explained to both Drs that I had headaches 24/7 based in the back of my skull with a pulling down sensation and neuralgia. My temples, face, eyes and teeth often had pressure and pulsating pains. Frequently I could not talk for the pain, my mouth would droop and I would lose sensation in the right side of my face. I went onto explain about the severe vertigo in detail and constant dizziness with the feeling my head is not attached to my neck. I described my head as feeling like the weight of a bowling ball and it physically hurt to stay upright. Pins and needles and loss of sensation on my right side of my body and I had began dropping items. My nausea and dysautonomia had worsened in recent months. Erratic heart rate and oxygen levels at times. The visual disturbances had increased along with a change in hearing. I told them my neck pain was now 10/10 the muscles like rock, constant muscle spasms and pain deep within the joints. Shoulder pain and weakness in the shoulder and arms, particularly my right arm. I could not bear anything touching the back of my head as the pain would intensify. Choking had become an issue particularly on liquids. I was having trouble recollecting words during my conversations. “I have lost my life, having to spend 80% of each day lay flat and still”, I said. holding back the tears. Both Dr G and Dr O listened intentivly as I spoke and gave me that time to share my symptoms.
Dr G already had my medical history and existing conditions to hand as I had to send those over prior to the appointment. Dr G said he wanted to hear me explain my symptoms to ensure they correlated with the imaging of which he said ‘they most certainly do’. Dr G went onto explain my images, going through them individually on the screen. He explained that Craniocervical instability was defined by a set of measurements that reach what they refer to as pathological.
Below are a few examples of my images, there were hundreds taken.
Both Dr G and Dr O explained how there is an ‘abnormal’ category of measurements and then there is ‘pathological’ they told me every measurement was pathological and in no uncertain terms I had Craniocervical Instability and Atlantoaxial Instability. They went onto explain to Nick and myself that this is both progressive and serious in nature. The main concerns being permanent damage to the nerves and spinal cord, the fact my brainstem which controls so many functions within the body is compressed and the risk of vertebral artery occlusion on rotation. As I rotate so far (over double the norm) and subclux I am kinking the artery which interrupts blood flow to the brain which can cause stroke and even death.
I sat in disbelief, when given the opportunity to ask any questions my mind went blank, despite having an A4 list of questions in front of me I could not seem to get my words out. Nick took over for a time until I got myself a bit more together. We discussed the surgery and what it entails. Dr G informed me that given the pathway of the artery which winds through the vertebrae and that its the skull and spinal cord it makes it a very complex surgery which doesn’t come without risks, at the same time each day living this way is a risk only for things to deteriorate and the surgery to become even more complex. It would only take one minor trip, fall or knock which could have grave consequences. He went onto explain that I would need a fusion from my skull-C1-C2 whereby titanium bars, rods and screws would be placed. The surgery would be long and afterwards I would be taken to intensive care. He described the first few days after surgery as a tunnel whereby the pain is so great you cant see the light but the extreme pain will pass to that of a more manageable pain. I was told I would lose 50% movement within my neck for life limiting my ability to look up, down and side to side. Dr G said the recovery is long and I may not see improvement until a few months in once the swelling has gone down. To support the fusion process bone will be taken from my ribs and hip. We discussed surgical fees and timeframes. The consultation ended and both Dr G and Dr O said any questions or concerns I have to not hesitate in contacting them.
On leaving the hospital I contacted my parents, I sat on a little stone bench and gave them a watered down version of the consultation. I felt it more appropriate to tell them the severity in person rather than over a phone call dipping in and out of range.
Once back at the apartment I went straight to lay down the vertigo after the taxi ride had returned with full force. I felt very numb, almost like the consultation wasn’t even about me and I sat in it on behalf of someone else. I encouraged Nick to go out and get himself some paella whilst I had a lay down. As soon as the door shut the tears came flooding, I must of cried solid for over an hour, I couldn’t compute anything, the only emotions I was feeling at that time was overwhelming fear and sadness. I didn’t want to talk about how I was feeling, I just wanted to go home.
I can only describe the journey home the next day as a cross between a carry on film and hell. The vertigo rendering me unable to walk I crawled (literally) through Barcelona airport, was stopped at security where my bags were searched and had to stand on a podium whilst i was searched thinking that any minute I was going to hit the deck. I sat in the lounge with my head in my hands, I could not focus on anything as everything was spinning at high speed. Once we boarded I was so scared of being this unwell, so high up in the air we contemplated getting off the aircraft and booking a flight for the next day. The strong urge to get home overode any possible complication that could occur mid flight. My eyes closed, I took deep breaths waiting for take off, Nick holding my hand as we headed towards the run-way, we had been taxying it for 45 minutes finally we were ready. Quite literally as the plane was about to take off a passenger pressed his emergency button and we had to return to the gate, the passenger was having a panic attack. We were another hour whilst the passenger disembarked the aircraft and his luggage was removed. Normally such a patient and understanding person I found myself frustrated and weepy, I just wanted home.
We arrived in Manchester and my phone was throwing out beeps like the clappers. Little did I know mine and Nicks family and friends were tracking the flight home and it came up “Aircraft returned to the gate, passenger welfare”, everyone thought it was me god love them. Nicks parents collected us and his mum got me into the front, they had brought a lovely snuggly blanket for me to cuddle into on the way home. We had a giggle in the car as Nicks dad had put the heated seats on to keep me warm without telling me. I sat quietly for 20 minutes thinking I’d peed myself and thought how could I get around this without anyone knowing. It was only when I opened the window as I was hot, Nicks dad said he’d turn the seats off. “Thank God, I thought Id wet myself and thats what the warmth was, Ive been trying to think of ways I could get out of the car without anyone noticing for 20 minutes”!!!!
Never had I been so happy to be home.
Sadly the journey took it out of me for months and my symptoms have continued to decline ever since.
Over the next few days realisation set in of what was ahead of us. The power of people and human kindness came to fruition…….