(Forgive how long this is!)
After a long and painful few years of attempting to get neurologists to understand my symptoms, I’d all but given up on finding any treatment for my disability. It seemed that no matter how hard my family and I tried to insist that these problems were severely disabling, no doctor seemed able to grasp it. I was constantly bombarded with repeat questions like “Why can’t you go out on your own?” and “Why can’t you work?”. While I wanted to seek pain relief treatment, Chiari is stubbornly resistant to painkillers and I have an unfortunate opiate sensitivity which rules out much else other than paracetamol and ibuprofen. I was constantly in pain and locked up in my apartment on my own while the people around me went about their lives. It was a very dark time for all of us.
To clear up the whole psychosomatic and schizophrenia diagnosis, I went to see a psychiatrist recommended to us by our GP. She was a lovely woman who was immediately genuinely shocked to hear that a neurologist had suggested I might be psychotic. After listening to my symptoms carefully, she concluded that they were unlikely to be psychological or psychiatric problems and that I would benefit more from further neurological investigation, although she did kindly offer to work with me if I thought that psychiatric treatment would relieve any of my suffering. It was a great relief to hear someone so confidently claim that I was completely sane and experiencing something very real and disabling. I said I would consider psychiatric treatment, but I did not end up pursuing it further.
At this point, I took a few months break to mentally heal from the last few years. I can honestly say that these were some of the most healing months of my life. I spent a lot of time meditating and giving myself some easy psychological help, like writing lists of my accomplishments and virtues in life, and taking steps to eliminate some of the more irrational and counter-productive behaviour patterns that my illness had started to form in me. Slowly I started to feel a sense of peace with my situation, and no longer felt that it was unfair or that I was too hard done by. When I was finally feeling strong enough again and more sure of myself and my right to treatment and recovery, I decided to see a neurologist again.
This time we got right to the point. We found ourselves a neurologist who specialised in Chiari malformations. At first we had our doubts, because Australia is not well known for its research and treatment of Chiari, but we gathered up our strength, got a referral and headed over to the new Macquarie University Hospital for our first appointment.
Thankfully the hospital is brand new, so the facilities and waiting rooms were spacious and comfortable. We weren’t left waiting for too long before we were taken in by a doctor in training and asked a series of diagnostic questions. He then fetched the neurologist, Professor Marcus Stoodley, and gave him the rundown on my symptoms. Stoodley ran his own more detailed diagnosis (which thankfully didn’t involve any damn electric shocks!) and concluded that my Chiari was very likely to be causing most if not all of my symptoms and that surgery would be a viable treatment option for me.
First off, though, he needed a new MRI done to check the flow of my spinal fluid. A severe restriction would indicate that I would need surgery in the near future, whereas a moderate to mild restriction would indicate that surgery was an option rather than a necessity. This MRI posed a new problem, though. One we had not faced in the previous tests. My sound sensitivity would undoubtedly make a loud and clunky MRI very difficult, and I would be unlikely to be able to remain still enough for a clear image as I am prone to muscle twitches and contractions when I am experiencing seizure-like activity. There was only one thing for it. I’d need to be put under a general anaesthetic and knocked out completely for the MRI to be performed.
At first, we booked it in at the new Macquarie Uni Hospital. It was booked several months in advance with very specific instructions that I would need to be completely out for the procedure. When the day finally arrived I was terrified and exhausted, but once again the beautiful decor and spacious waiting rooms of the new hospital put me at ease. What didn’t put me at ease, however, was that the receptionist had no idea that I was supposed to be receiving an anaesthetic and they seemed to be leaving us waiting for over an hour while they sorted things out.
When they finally got me into the changing rooms, they informed me that I’d be going under heavy sedation, not an anaesthetic. I started to cry (as I did a lot in those days) and said to my mother “I don’t trust these people to look after me”. My mother put her foot down and said “She can’t just be sedated, she will have a seizure, she needs to be completely knocked out”. There was some kerfuffle and confusion amongst the staff before they finally got an administrator to come speak with us. He took us into a private room and apologised profusely, saying that they had no anaesthetist and in fact had no hospital infrastructure in place to provide anaesthetic to someone getting an MRI. He said that they would be hoping to implement this some time in the future but did not know when. They treated us kindly enough for us not to be too angry or upset when leaving. The booking seems to have been a mistake made by the receptionist.
After a bit of searching we found that the Prince of Wales public hospital was the only one in Sydney capable of performing an MRI under anaesthetic, but that the waiting list was six months. Reluctantly we booked in and began the wait, in which I spent more time trying to reduce my anxiety and depression resulting from my disability (to great success, I might add).
When the date finally arrived I was pretty nervous, but I was determined to get the damn thing over and done with finally. We head into the day surgery unit at Prince of Wales, and the waiting room is packed to the point where there are not even enough chairs for everyone. We spend three hours in there while my seizures went off one after the other due to the noise, and then were finally escorted down to… another waiting room, equally packed. We sit, we wait, we wait some more. Another two hours later, a nurse pulls me into another crowded but curtained off area and tells me that there is no anaesthetist for me today and that I will need to come back tomorrow. I sit there in shock, saying “I can’t do this all again tomorrow!” (I had been fasting for ages, so I was very low on blood sugar and patience). Instead, we book it in for next month.
Next month, finally, the MRI goes perfectly to plan. The hospital give me priority and zoom me through the (empty) waiting rooms, then I am wheeled down to imaging where a full team of friendly docs are waiting to put me to sleep. The next thing I know, I’m waking up in recovery, drooling into the oxygen mask they had given me. I felt so glad that it was over, I remember wanting to hug the nurse attending me. After wheeling me back up to day surgery, I devoured a cheese sandwich (best sandwich I’ve ever eaten in my life, I’m not kidding) and went home. Aside from a nasty bruise on my hand from the cannula and wicked sore throat from the tube they had to use while I was out of it, I was completely fine.
Off to Professor Stoodley again with the results, he told us that I had a moderate CSF flow restriction and that he was almost 100% certain that my Chiari was causing my symptoms, but he then gave me the amazing news that we had all wanted to hear. My Chiari was not likely to be life threatening, and I did not need immediate surgery. He gave us the very honest but very reassuring rundown of what the surgery would involve, including showing us on the MRI exactly what would be done. He gave us a list of odds of the likelihood that my individual symptoms would clear up, which included him saying that my sound sensitivity was most likely caused by my Chiari (another thing we’d been waiting to finally hear), and gave us the lowdown of the risks. He then told us that as soon as I was ready, I could book in the surgery.
Now here I am! It took me only a few weeks to decide I definitely wanted the surgery done, but a few months to get the courage to set a date. After years of diagnosis disaster, we have finally found a doctor that we all feel extremely comfortable with. I haven’t even had the surgery yet, but I can recommend Professor Stoodley immensely. He is very sympathetic, professional, friendly and doesn’t speak down to you. I have faith in the medical industry again.