A teachers journey with SS - we never stop learning
Hi I’m Rebekah Gartner and I’m 74 years young. I live in New Zealand, a relatively small country and I’m one of only four known cases of superficial siderosis here at the moment.
My story begins years ago in Auckland (our main city) with me standing on a footpath waiting for my husband to come out of the boat yard. I didn’t know it but a woman was driving her car along the footpath because she didn’t have a warrant, license or rego (energy certificate).
I don’t remember much about the accident other then what she said and what my husband found. I must have turned as she hit me face-on, breaking my bones and teeth. I fell to the ground backwards, my dress got caught in her wheel and she dragged me on the ground over three car lengths.
My skin was all torn and when I was knocked down somehow she ran over my neck and the base of my back. She ran over my feet too which I now have rods and screws in. At the scene, I was vomiting and going in and out of consciousness.
She told my husband that there was an emergency department up the road and then left.
A missed opportunity
The doctor on duty at the hospital was young and just out of medical school. He said he couldn’t read X-rays and that my vomiting and blackouts were due to shock. He called the police but they said they’d had twelve people run over that day and could I come into the station. I was in no fit state to go anywhere.
After nine hours the hospital released me. We didn’t live in Auckland, we were staying with friends, so the next day I asked my husband to put me in the back seat and take me home. I went to see the local doctor the next day and he said I should be in the hospital however because the accident didn’t happen in Hawkes Bay, I couldn’t go to the hospital there.
So we went home again.
I couldn’t work
Our accident insurer kept me on the books for eighteen months but they wanted me to go back to work (I’m a teacher). On the first day, I kept crying and my balance was really bad and on the second I was so bad that I got sent home because they said I was a danger to myself and the children.
To add further insult to my injury, I got no further insurance payout because a neurologist told me if I stopped drinking I’d be alright (if I have 2 glasses of wine a year I’m lucky).
I started to have TIAs and then another six months off work because I couldn’t drive. I tried to go back to work but I only got worse. I had a stroke and the same neurologist as before didn’t believe there was anything wrong with me (MRIs weren’t around at the time).
Many times I ended up in hospital but because we only had one neurologist at our local hospital who said I was putting it on there was nothing I could do. I have terrible headaches, my lower brain stem burns with pain and I have subarachnoid hemorrhages nearly every six weeks.
My turning point
Then a big breakthrough happened. The neurologist asked another doctor to do a lumbar puncture and this doctor said I had blood in my spinal cord fluid. He told me to go to my rheumatologist at Auckland Hospital (I also have a rare autoimmune condition, Bechet’s – again only four in New Zealand) so I went to see her and spoke to her about my accident. At this point, I was still on crutches.
She put me in touch with a neurologist and put me in hospital for two weeks. An MRI scan showed bleeding from the brain stem.
I went to another neurologist in Hamilton, no longer trusting the local one because he’d let me down. While attending an examination with the new neurologist, my speech went funny because I was having a hemorrhage. He asked my husband if I’m like this at home, to which he agreed. He observed that my sight and hearing were going (and now I’m profoundly deaf). After asking many questions, he agreed that I had superficial siderosis. The Auckland neurologist agreed with the diagnosis. They gave me a blood patch but it never worked.
I’m grateful for those who have helped me
It has been a difficult journey however I want to say thank you to Dr Nik Korchencko at the Hawkes Bay Hospital for listening to and seeing what was wrong with me – he always talks to me when he sees me. Also a big thanks to Dr Michael Levy for helping me to understand superficial siderosis. I write to him all the time and by the time I get up in the morning, he has replied. I couldn’t do without these great men in my life.
I thank my husband Wayne for battling on with me, even when I had my stroke and couldn’t talk properly for four years and a doctor at the Auckland Medical School helped me to walk and talk again. When I have my bleeds, my husband can’t understand me but my speech usually comes back after a couple of days.
I know that New Zealand didn’t have access to MRIs at that stage but it was great to have Dr Levy to help us all out. I just wish I could go to the US to thank him in person.
Where I am today
I had to give up my teaching job as my balance was so bad and I couldn’t remember the children’s names. As the bleeds got worse, I took early retirement. I also had a guide dog for many years, now retired, he’s gone to live with a friend of ours. I may not get another one for a while because they weren’t bred over the Covid period. Until then, I can’t go out on my own because I have only 20% vision.
I have proven to myself that I can get myself off to the gym, do weights and everything else anyone else does. Oh boy do we work it out in aqua gym! I spend at least two hours a week trying to keep strong.
I was on Ferriprox for a few years but it didn’t help because of the bleeds I have. I wish there was something that could help all of us.
We have four people with superficial siderosis in New Zealand now and we have a few really good, knowledgeable neurologists for such a small country.
Thank you for reading this, I hope my story helps.
Rebekah Gartner