Susannah's story
I was diagnosed with Trigeminal Neuralgia (TN) 11 years ago, at the age of 32. At that time my daughter with special needs was 10 and my younger daughter was almost six. I am a solo mum. My GP diagnosed it immediately but she referred me to the maxillofacial surgeon at the hospital for an expert diagnosis.
This was a humiliating experience that resulted in a complaint through the Health and Disability Commissioner. Having been in excruciating pain, I had been unable to keep up my oral health which is very normal when living with TN. The surgeon examined me, asked me if I actually owned a toothbrush, then told me I don’t have TN, just poor dental hygiene. Thankfully, my GP continued to treat it as TN despite this. I had long periods in remission until 2018 when the pain came back with a vengeance and without any more remissions. My GP got the pain largely under control until the end of the year when it became totally unbearable. My GP consulted with a neurologist from our DHB, but whose services are based two and a half hours away, who suggested a new medication, and then saw me in the New Year.
The pain that I experience with TN is excruciating, and because cold weather, wind, vibrations (loud music) and so many other things - even eating - can trigger it, I could only go out the front door with my face swaddled in a scarf and I spent the least amount of time possible outside. This was how I lived until my operation. After an MRI and a further consultation the neurologist referred me to a neurosurgeon. This also didn’t go well; I had done some research so I knew that if I required surgery there were two main options. I went into the appointment hoping to not require surgery but if I did then I wanted the less invasive of the two. My entire appointment was 10 minutes from meeting the surgeon to leaving his office. In that time he was able to confirm that I did need surgery; he refused to consider the option of surgery that I preferred; and his answer to every question around the surgery was “Don’t worry about it, you’ll be fine”- for someone with type 1 diabetes and several complications including chronic kidney disease this was not at all reassuring. He also tried to get me to sign the consent forms for the bigger surgery. I understand now why the bigger surgery was required but this surgeon took no time to explain why, he just told me that he had not performed the smaller one for 14 years and wouldn’t do it. I said I wasn’t prepared to sign the consent form so he said he would see me in six months - which would be April 2019.
Very soon after this appointment I asked for a second opinion. When April came I rang the hospital asking when my appointment would be. They said they were running a month late. In May there were doctors’ strikes and I was told I would be seen in June. In June I rang again and was told that one of the surgeons had left so again they were running behind schedule. I enquired which surgeon had left and it was the one I was meant to be seeing. I was frustrated that I had not been informed, and would have been waiting for an undetermined time for my appointment. Since there were no other neurosurgeons in our region I asked to be referred to our next closest hospital, six to eight hours away. Thankfully, I was seen just three months later. The whole appointment was all about me, unhurried and very thorough. Both the registrar and the surgeon took their time to listen to all of my questions and concerns, talked with me in depth about why the big neurosurgery was required, and answered every question I had. I felt at ease and much more informed.
The surgery is classed as elective, which makes getting a date a bit harder. I had to say no to the first two dates as I was away over Christmas/New Year. I finally got my surgery on 13 February 2020. The actual surgery was a success, however, a few days after I returned home the Flying Doctor service had to take me back to that hospital for a second neurosurgery due to a cerebral-spinal fluid leak.
The recovery from the second surgery has been a much harder journey, with complications of severe nausea, vertigo and balance issues persisting (I’ve just started using a walking stick occasionally to help with the balance issues). At the time of my surgery I was on a tremendous amount of medications including Gabapentin, Baclofen, Conazapam, Nortriptyline and Tramadol. These medications not only impacted my daily living - I slept for long periods of time and was too tired and unsteady to cook or clean - but it negatively affected my declining kidney function too.
I have never met anyone else with TN. There are about four or five people in my local area that we know of through our Facebook support group, and approximately 300 in NZ who are connected by social media. Being a part of this online support group has given me new friends, a place to ask questions all the time, find out about other people’s experiences of different things TN-related and to be able to support others. No one, not even our closest support team sometimes, knows how difficult life is when you live with chronic pain and need to take such strong medications for it. It’s good to be able to vent to those who understand, but also to share our successes or highlights to the group. This story of debilitating pain and being unable to function due to the pain and the medications we take is very typical of sufferers I have connected with on our FB support page.
My daughters ended up doing everything for me - cooking, cleaning - and they missed out on so much time with me because of these factors. These would all help those who have TN:
- Having access to help when things get bad would have been invaluable. I also continued working, albeit part time, until my surgery as I am a single mother and I couldn’t afford to not work. Luckily, WINZ was able to help me during surgery and recovery, which was a small help. My parents drove 2,000km to look after my daughters and me following my surgeries; although COVID-19 has been a very negative thing, the lockdown happened during my recovery which meant my parents had to stay for longer (a total of 12 weeks altogether) and I am very thankful because I was still recovering when they left.
- Having access to home help, to ease the stress of not being well enough or able enough due to pain or medication side effects, would be invaluable at all stages of the TN journey.
- Having access to competent specialists is also essential. I do realise that staffing is the biggest factor for this, but looking at ways to improve this area is really needed.
- Changing the status of surgery from “elective” would give those offered surgery a better chance at getting their surgery sooner. Surgery is not done for fun, or to improve looks, or just for the sake of it. It’s because pain relief is totally ineffective, medications are strong and have many side effects, and improving quality of life is paramount.
- Having some way to record diagnosed cases of TN would give solid data around how many New Zealanders are dealing with this terrible, debilitating and degenerative disorder. That way services can be designed around the needs of the sufferers in their separate communities - those in Invercargill would benefit from different types of services to those in Auckland, or Northland, such as transportation, specialist referrals, supports.
- For many with TN, access to medicinal cannabis/any type of cannabis could also be very beneficial but most can’t find out due to cost. Being able to use medicinal cannabis as an alternative to all the medications that we take, that have life-impacting side effects, would be an option that we would be so grateful for. I self-fund diabetes equipment to make life a bit easier (without it when I was most heavily medicated for TN my diabetes would have ended up out of control with a high likelihood of hospital admissions as a result), and the cost for self-funding this equipment is $100 for 14 days. This is why getting a prescription for medicinal cannabis is unattainable for me. Using cannabis illegally is also not an option, as I am a registered teacher and I can’t jeopardise my registration. I still don’t work full time and chances are high that I never will.
- There are medications available overseas which greatly improve pain levels for TN sufferer, and there is better access to surgical options. Having access to any medication that will help with the pain that we suffer from is so important. The main one is Trileptal (Oxcarbazepine), which is readily available in other countries but is not subsidised in NZ. A framework for treating patients with TN who present to emergency departments also needs to be created, so that added stress and the time spent in pain can be reduced. By making things simpler and more straightforward for people who are trying to operate in constant state of “brain fog” and/or pain, we would appreciate this so much and requiring help or services would be so much easier.