This is the first of (hopefully!) a few guest posts on the topic of Carotid Artery Dissection. I've documented my own journey and how much it changed my life but I thought it would help to raise awareness if others shared their stories too. I put a callout on the carotid artery dissection Facebook group and Linz was one of the first to get back. I've known Linz through the group for some time and I can honestly say that his story has been one of the toughest. I think we all feel a kinship with one another - we are the only people who really 'get' the struggles, the fear, the uncertainty of it all. And despite all that we each have going on, my experience has been of kindness and support and Linz has always been there ready to offer a kind word. So without further ado I will share below (in Linz's own words) his difficult story - for me, reading the story highlighted how unusual this condition really is and how difficult it can be to diagnose.
5:30am 24th December 2017 woke up in agony. Had severe head pain (not what I would class as a headache).
In all my life, I’ve never suffered from a hangover/never had a migraine/cannot remember ever having a headache but I was approaching 50yrs old, had been drinking on and off all the previous day so thought perhaps, just perhaps this is what people call a hangover in which case it’s my own stupid fault
Took 1500mg paracetamol which didn’t help at all. Drank loads of water to see if hydration would help (it didn’t) and tried to carry on as normal doing my best to ignore the pain, went to bed 8pm still in pain hoping to sleep it off.
7:30am 25th December 2017, woke-up, pain even worse, had a metallic taste in my mouth and my tongue felt like it had stray hairs on it, no other symptoms , got up/ dressed, thought this isn’t right, surely this cannot be a hangover, no pain relief that I had in the house helped, by 10am went back to bed in agony, spent the day in bed, Christmas Day ruined.
7am 26th December 2017, woke-up, still in severe pain, pain at a level I never knew existed, metallic taste still present and my tongue still felt like it had loose hairs on it but I could not see any in the mirror and the left side of my face was swollen. Got dressed, went downstairs.
Wife took one look at me and gasped, the left side of my face was severely swollen, the left side of my tongue was also swollen (it was 3 times thicker than the right side).
Immediately thought this was an allergic reaction to something I had eaten/ drank or touched recently, we were due to meet-up with my in-laws for a Boxing Day meal at a local restaurant, mother in law took one look at me and agreed it looked like an allergic reaction so I put myself on antihistamine. Because of my swollen tongue, I really struggled to eat as I could not move the food around my mouth.
Thursday 28th December, my tongue had now swollen to the point it was starting to block my airways, with it being Christmas my doctors was closed, I called the NHS 111 helpline for advice, was on the phone for 90 minutes waiting for it to be answered and eventually gave up. 10am, now struggling to breathe I drove myself to my local hospital A&E, I was expecting long delays, didn’t want my wife to be sat their for hours on end so she finally agreed to wait at home for me.
Arrived at hospital, went through triage, my Blood Pressure was very high 180+ over 100+ something but cannot recall the exact number, in fairness I was fast-tracked through the system and 30 mins later a locum Consultant saw me, he was from Africa, hardly spoke English, he told me he was only in the UK for 10 days through the Christmas period.
He took one look at me, and said it was angioedema, he prescribed a stronger dose of antihistamines and Codeine for the pain and said I should be ok in a few days.
1 week later, with no improvement to the swelling, my tongue was still severely swollen and having ran out of medication (he only prescribed 7 days worth) I called NHS111 for advice, they said to go back to hospital, my doctors were still closed so I drove myself to hospital, went through triage, waited 2hrs to see the duty consultant, he was not interested in my situation, was not interested in past treatments, was not interested in my symptoms, he wasn’t even willing to see me, he made a nurse take me to PC24 (that’s Primary Care 24hrs) a small area at the side of the hospital where a doctor (typically a GP) is available 24hrs a day as a walk in service.
The nurse registered me so I sat down and waited 2hrs, in absolute agony, noise/ lights/ children running around all making it worse. After 2hrs and having seen numerous people come and go I asked how much longer I was to wait, 45 minutes later I was called, I was sat in front of a prescribing nurse (not a doctor) she took one look at me, and when I told her my situation she could not understand why they had put me down to see her, I clearly needed a doctor so I was sent back to the waiting room, 30 mins later I was called to see a doctor, she took one look at me, listened to my symptoms and said I had cluster headaches, I argued that this was not a cluster headache but she ignored my protest, prescribed Tramadol for the pain (Codeine was ineffective) and antibiotics (just in case it was an infection).
I knew at this point, this was something more serious than cluster headaches.
The following day, my doctors was open for business so I called for an appointment. 2hrs later (10:30am) I was sat in front of a GP who took one look at me and was shocked at how I looked (all the swelling still very evident) he wasn’t happy with how A&E had treated me, said I should complain as complaining was the only way he felt things would improve. He called 2 other doctors to asses me, took over an hour, because of my tongue, I could not speak correctly, I could stick my tongue out but I could not move it left, the 3 doctors initially suspected I had suffered a stroke and gave me a thorough examination, I pointed out at no stage had I lost consciousness, at no stage had I lost strength or grip in my left arm or leg and a friendly left handed arm wrestle proved my point, they still didn’t know what the problem was, they called the local hospital and was able to get an emergency appointment with an ENT specialist (Ear Nose and Throat) that afternoon, I drove myself to hospital (again).
Met a young junior doctor who sat me down, read my notes then asked loads of questions.
After a thorough assessment he put a camera down my throat and observed the swelling was all the way down to my voice box, and the left side of my voice box was not working, he arranged a CT scan
Few days later I had CT Scan, it showed a swelling at the back of my throat but they couldn’t work out what it was, so an ultrasound scan was arranged and was carried out a few days later, the ultrasound scan implied my jugular vein was enlarged and at imminent risk of bursting, with my wife by my side, I was kept in a cubical as they tried to arrange an urgent ambulance to take me to my not so local specialist hospital for urgent and life saving surgery, my wife being obviously distraught at hearing such news but I kept saying there was nothing wrong with my jugular vein, sure enough 2hrs later the doctors told me, my scans had been sent to the specialist hospital, a cardiovascular surgeon had seen the scans and was confident there was indeed nothing wrong with my jugular vein, he suggested a MRI and MRA scan was needed so after all that stress I was sent home to wait for yet another scan.
MRI and MRA scans were carried out a few days later.
By now the swelling was starting to subside, the Head pain was not as severe, the Junior Doctor arranged an appointment with their most senior Consultant, with the swelling now subsiding and the pain levels reducing he was under the impression the Surgeon might release me back into the care of my GP.
Thursday, late morning (cannot remember the exact date) I walked into a room with my wife, the Consultant Surgeon was sat at a computer screen, there was 5 other doctors plus the Surgeons Registrar and 2 nurses, I immediately knew this was not good. The registrar took my wife by the arm and sat with her in the corner of the room around 8ft from me, the Surgeon having welcomed me into the room looked at me, looked at the screen turned and said, I had cancer, the MRI had confirmed it, it was at the base of my tongue and they needed to operate as quickly as possible (as he pointed to this mass on the computer screen).
One of the nurses in the room was called Sue, she was a cancer specialist nurse and would be looking after me, she went on to explain everything about chemotherapy/ radiotherapy and everything I would be facing, my wife was in a total mess, I was nonchalantly in denial, could not and would not accept I had cancer but my words fell on deaf ears.
I was well aware you do not suddenly wake up with cancer, if I had a cough for the past few months or difficulty swallowing etc perhaps so but with no health issues at all prior that day I was adamant I did not have cancer.
Friday morning I received a phone call, an urgent biopsy had been arranged at the University hospital (QMC in Nottingham) and I needed to be there by 7am ready for the procedure.
He introduced himself and asked why I thought I had cancer, I started to explain what had happened (as per the above) he rudely stopped me and said I had 60 seconds to tell him to which I replied, I cannot sum up the past 2 or so months in 60 seconds so with that attitude I suggest you read your notes before you cut me open (I was absolutely livid with his attitude).
I was put asleep and 2.5hrs later woken up in the recovery room, still drowsy from the anaesthetic he asked if I understood what he was saying, I said yes/ just, he said I didn’t have cancer, he had not carried out any biopsy, he thought he knew what it was but need to do more research first and could I return in 2 days time to see him.
I returned along with my wife as requested, I sat down by his side and he immediately apologised profusely for his mannerism and attitude when he first saw me, he had just returned off holiday, had literally been back a few hours to find I had been placed on his operating schedule without his knowledge, he had no information why I was being operated on and initially felt I was taking the place of more seriously ill people but his attitude was wrong and he should not have taken it out on me, at this point his whole body language changed.
He confirmed he had since been able to read my notes and fully understands why I had been put into his care, having looked at previous scans he felt there was a small possibility I could have cancer but he needed more MRI and MRA scans first, he would get these sorted as quickly as possible.
He also said he was fuming at the consultant who had told me weeks earlier that I had cancer, before a cancer diagnosis is given to the patent, the patient must have a biopsy, without a biopsy, You simply have a mass, it might be cancer, it probably won’t be cancer, the biopsy confirms it and the consultant was wrong to tell me I had cancer without a biopsy.
Sure enough a week of so later I had more MRI and MRA scans, a short while later the Consultant telephoned me to confirm, I had actually suffered from a Spontaneous Internal Carotid Artery Dissection and I definitely did NOT have cancer, he explained what a dissection was and how the bleed created other confusing symptoms, the initial scan I had months ago also showed the dissection as did the CT scan but clearly everyone else including the Radiologist had not notice it. Being a Cancer Specialist, he could not help any further so would pass my care to an Endovascular and Cardiovascular surgeon who will want to see me for a follow up.
A week or so later, I woke up Saturday morning feeling very ‘rough’.
Wife took one look at me, the swelling was back (not as bad) and my head was pounding, not in the sense of a headache, more in the sense I was wearing a motorbike helmet 2 sizes too small.
She range NHS111 and as soon as she mentioned dissection they acted quickly, within 7 minutes (literally) I had 2 ambulances and a fast response car outside my home with the crew in my living room, my Blood Pressure was 186/110 (I’ll never forget that number) 1 ambulance crew stayed as the others left but as soon as they saw my BP, there was no discussion, I was off to Hospital.
Minutes later I was rushed into a n A&E cubical, the Consultant introduces herself, their records still showed I had cancer and it took a lot of insistence on my part and my wife to tell them their information is out of date and I had in fact had a iCAD, she started to IV steroids into me to bring the swelling down, from their I was moved to the University Hospital as my local hospital did not have a Neurologist on duty (my father in law had to take me as they could not get an ambulance for at least 7hrs and that was too long for me to wait apparently).
I was kept in hospital for 4 days, 2 days being injected with steroids every 4hrs, no scans, no consultation with any senior doctor, nothing, absolutely disgraceful.
After 4 days, 3pm told I could go home but needed to wait for some medication, 10pm, sent home with no medication because they ‘forgot’ to arrange it, so my GP sorted the medication the following day.
My actual GP told me in all they years he has been a doctor, he has never seen a spontaneous dissection and indeed my doctors surgery has never had a case up until mine.
Numerous consultants/ doctors/ nurses have all said it a miracle it did not kill me at at least cause a massive stroke, especially considering I was swimming and enjoying hot-tubs as I had the actual bleed.
As a result of the consequences I now have to live with, a part of me wishes that it had have killed me.
The new you
Firstly you will eventually be normal, however it will be your new normal, your old normal went out the window when you had your dissection, especially if your dissection lead to further complications for instance a stroke. Its a learning curve that even now, for me, 28 months later, I am still trying to get to grips with.
For me, the old Linz has gone, working full time and then 6hrs sleep was easy, the old Linz is now replaced with the new Linz who needs 10+hrs in bed including an afternoon sleep each day and cannot work. Old Linz easily spent 4hrs doing his garden, cutting the lawn, trimming the hedges, weeding the flower beds, sweepings the paths, the new Linz needs 2 hours simply to trim the hedges followed by a day to recover.
Old Linz could spend hours with his head stuck in an excel spreadsheet, number crunching or hours typing in Word, now after what is in effect only minutes he gets number/ word blind and cannot make out what he is looking at, it’s as though the information on screen turns into hieroglyphics and this also applies when filling in forms using pen and paper.
A meeting involving 50 others, all sat around a conference table was nothing for the old Linz, the new Linz struggle to pick up on conversations involving only a handful of people made worse if the environment is noisy and don’t get me started if loud music/ flashing lights are present.
Moving around heavy items was nothing for the old Linz, moving household/ garden features/ heavy suitcases on holiday meant nothing, the new Linz struggles with such tasks and as much as I can ‘Push myself’ to do it, I then have to accept the consequences which can take a couple of days to recover.
Old Linz could easily remember a shopping list, new Linz forgets he’s running a bath.
Headaches/ neck and head pain is the new normal, old Linz didn’t experience pain.
I have almost accepted the new Linz, it’s tough, it’s frustrating, it’s broody annoying at times and yes it’s restrictive BUT it could be worse, could be a lot worse, so I do not beat myself up about how I am now, most of my friends and family are starting to understand how I am, my wife has been and continues to be very supportive and understanding and has adapted remarkable well to accommodation (or is that put up with) the new Linz.