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The Power of Story Telling

Our Association has been operating as a charity for 20 years.  Sometimes in the busyness of volunteering, it is easy to lose sight of the good we do for our community and the power of story telling

This experience has been supplied by Jo Holland who has given us permission to publish in order for her experience to help others.


To the Trigeminal Neuralgia Association Australia

“I can’t thank you enough for all of your support which immensely assisted me to access quicker treatment during my recent hospital experience.

I basically collapsed into the ER Department and was in a state of distress as I walked through the doors and they asked me if I was alright, which I answered no. I was experiencing an attack of Trigeminal Neuralgia which spread to occipital neuralgia and had also triggered my frontal migraines. I was in a world of pain.

Presenting my TNAA Blue card, endorsed by the Medical Advisory Board, led to a prompt triage. Although the medical staff hadn’t encountered this card before, they recognised its significance and initiated treatment shortly thereafter.

Over the course spanning several days, my treatment included Sodium Valproate and Cloromazapine infusions (noted from my neurologist’s instructions), a Sphenopalatine Ganglion Block, a Bilateral Occipital Nerve Block, and Tapentadol for pain relief, complementing my previous 3-month Botox treatment.

Overall I was diagnosed with ‘Status Migrainousus’ which just sounds like a Harry Potter spell to me, but encompassed all of the TN and ON as well.

Diagnosis

I deeply appreciate how the card influenced my care, especially as I was unable to communicate during this period. My partner’s assistance was invaluable, and their possession of a second card allowed them to advocate on my behalf without disturbance, especially as I was completely out of it during the first few days (so much so as when I closed my eyes I could just see cartoons of everyone talking in the room and believed my bed was embedded as part of Fraggle Rock (?!).

The occipital nerve block worked a treat. I have had one before which wasn’t as effective but this one yielded immediate relief and alleviated pain in the back of my head.

The Sphenopalatine Ganglion Block provided relief to searing pain in my teeth which had previously felt like they were being tasered.

The infusions also offered relief on multiple fronts, ultimately restoring my wellbeing and eventually everything settled back into place.

My discharge pharmaceutical regime of increased doses in Tegretol, Lyrica, rabeprazole, and short-term steroid is slowly settling the expected end of my symptoms at home over the next week.

While this experience marked the worst pain I’ve ever endured, I am immensely grateful for the exceptional treatment I received, all thanks to the unwavering dedication of the Trigeminal Neuralgia Association Australia in providing support to individuals like me and providing tangible resources which can be used in cases of emergency care.

I cannot thank you all enough. Wishing everyone wellness and to take care of yourself 😘 XXX”


Jo was treated at Campbelltown Hospital, NSW.

Camden and Campbelltown Hospitals are New South Wales public hospitals servicing the Macarthur region in South West Sydney. Camden and Campbelltown hospitals operate under a single, common executive management structure, with services delivered across both hospitals.

  • Number of beds: 306
  • Founded: 1899, Campbelltown
  • Affiliated university: Western Sydney University
  • Care system: Medicare (Public)

“Especially great experience from a hospital which has historically been known to have “Rampant understaffing and an excessive number of vacancies …[which has frequently] drawn condemnation from a multi-partisan parliamentary committee.

When I first attended ER there was only one single seat available, ER was over capacity with an average 9 hour wait at that time. The hospital staff kept apologising, even though I was receiving responsive treatment. More needs to be done to equip our critical hospitals with the staffing they need”


you are more than welcome to use my experience and story in any article. I feel so lucky to have found this group after so many years of suffering. It was so good not having to repeat my symptoms/experiences due to the card and was super grateful that the hospital was so super responsive.

My husband just told me that the ED Specialist took a photo of the card and was sharing with his colleagues. It is great to hear that they are spreading awareness of the condition within the medical field too 🙂


Jo has updated us from the response from the the Hospital

I also forwarded a link to the hospital for their acknowledgement, and they have asked for the link to be disseminated up to the Executive Staff and to the Board of Directors for even further promotion. I really can’t thank you enough for all of your support. This last hospital experience I had, was in stark contrast to the previous admissions I have had and am hoping that this further promotion can flood the hospital with awareness of TN.
Wow that is wonderful to hear. Maybe they will consider a collaboration with us seeing as they are linked to Monash University. Thank you for taking the time to tell us about your experience. I totally understand when a person is in a bit of remission, they don’t like to be reminded of their pain but stories like yours make such a difference. I will also link your story to our Instagram page this afternoon.

Jo


Our Association is always looking for volunteers.  If you have a few hours spare a month, reach out and help us help others.
Your interactions with others highlighting trigeminal neuralgia awareness is so important – please let us know your stories.

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