Fritz Tuaa shares his journey living with Syringomyelia
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- Опубліковано 16 вер 2017
- Fritz was diagnosed with Syringomyelia in his 20s leaving him paralysed in the lower limbs. With support from the New Zealand Spinal Trust's Kaleidoscope program he found a new career.
We asked New Zealanders affected by spinal cord injury or impairment (SCI) three question as part of our 2017 national appeal to understand how they found their bright new future.
How did it happen? How did you feel? How did you get to where you are now? We hope the answers surprise, inspire, and help you.
The NZ Spinal Trust supports Kiwis affected by SCI by providing world class programs and resources. Take a look at www.nzspinaltrust.org.nz where you’ll find practical advice, inspiring ideas, and real-life stories from others who are living life after SCI.
We’re also active online so connect with us on social media, sign up to our email list, or just reach out and say gidday via phone, email, or in person. We’re here to help.
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Hello I have this severely disabling condition and losing the use of my legs and arms. I admire your will.
Fritz and I were inmates at the Auckland Spinal Unit Rehabilitation in 2012. We both have the same medical condition SYRINGOMYELIA.
Inmates at Rehab, I like it, felt that way!
I hope you are still hanging in there Fritz. Been battling Syringomyelia for the last 27 years. I would not wish it on anyone. The syrinx was caused by a botched spinal surgery that was performed the night I suffered a traumatic spinal cord surgery which left me a T-12-L-1 injury at the age of 21. I lived a healthy and active life post spinal cord surgery. 24 years post injury I started to lose some function of my abdominal function and I was having severe burning in my mid back and abdominal area. I would not wish this on anyone. It has robbed me of an active and high profile life as an elite coach in wheelchair sports. If you're from New Zealand then you might know one of my friends from wheelchair racing, Ben Lucas. Ben was a world class racer who has become an outstanding representative of New Zealand at the international Paralympic level. Take care and never back down. Know that you are not alone. If you doubt anything I've written then google me name and you can read about the life I lived pre-syringomyelia.
Is that persistent central canal normal🧐🧐
@@mograkhan-bt2zk Not sure about your statement. I have had my spinal cord re-plumbed six times since I hit the ground in an off road motorcycle accident in a large quarry. Fell over 70 feet and it was over two hours before someone responded to my calls for help.I was an idiot for riding alone in such a dangerous environment. Since I hit the ground I have alway owned up to my tragic mistake and the pain and suffering it brought to my life and that of my retirement aged parents. I've been a T-12-L-1 incomplete paraplegic for the last 48 years who has requited a wheelchair for mobility. To anyone out there dealing with syringomyelia, I recommend that you dig deep into the research and seek a neurosurgeon who is a specialist in Syrinx surgeries. If you are from the US then go to the University of Iowa Medical Center, Craig Institute in Colorado or at Duke Medical Center in North Carolina. At 70 years old I will no longer seek surgical options. Been there and it has worn myself and my loving family down. I'm at the point where I just want to keep the pain under an 8 on.a scale of 1-10. My diet has remained consistent and I maintain a body weight that allows me to perform most of my transfers in my activities of daily living. I am fortunate to have had an excellent Physiatrist(Physical Medicine Doctor) for the last 27 years who is attentive and he actually makes "house calls" to check up on me, my wife amd two boys. God bless you and all the best with the mental health issues related to this insidious health issue called Syringomyelia. .
10 years after being diagnosed with the same rare disease, I am lucky to still be mobile. I don’t bother trying to describe it to new doctors any more. Syringomyelia is so rare most doctors have only seen it in a textbook.
World famous golfer Bobby Jones was diagnosed with & died from Complications w Syringomyelia.
Same thing with my mom she is in a lot of pain
That is so awesome that your still mobile. I wish I didn’t have surgery. I should have let it take it’s cause. Maybe I’d still be walking but with a limp or a gangsta limp haha
@@susie6039 SRSLY!
@@lulumoon6942 yes
what's your problem?
Hi how are you doing now?
Kia ora Fritz, and other Kiwi friends from across the globe! 🌄 This condition is progressive which means we keep losing mobility and health over time, so I do hope you were successful in your campaign! Cheers to all, and to better days! 🙏❤️🌈🪶💞
I have it too, mine is from Chiari Malformation. I had the decompression surgery, but my pain is back and head shaking and muscle twitching, blurry vision , brainfog and weakness.
Got mine after 2 decompressions, don't know which is worse! Best to you, S 🙏❤️🌈🪶💞
Hope you get well soon. I know how you feel:'(:'(
You never get well from SM
@@brt-jn7kg treatment can help some
@@brt-jn7kg its what you do next to keep well, exercising, eating well, mediating, so many things to do.
@@susie6039 weed
@@lulumoon6942 if that works for you.. ok 😁😊
"Live your best life"
How do you deal with the pain and still continue? I'm 8 yrs in after an MVA and subsequent diagnosis and it's totally ruined my body. I have respiratory, heart, migraine, temp, sleep, pain eating, ect and all of the above and below. I've been wheelchair bound for 5 yrs now but just trying to function some times everyday I am in so much pain. I just want to be out of pain and maybe be a functioning adult again.
Hi Korina, The first thing to manage with Syringomyelia is usually getting a shunt or drain inserted so as to drain the syrinx and to reduce the pressure as well as hopefully stopping any additional spinal nerve damage. Sometimes these shunts/drains can move or block over time so may require some future attention.
Then the issue becomes managing the consequences of the irreversible spinal nerve damage which for many people involves some very severe pain issues. Interestingly it seems that between 80% and 94% (depending on which study you read) of people with SCI report having chronic neuropathic pain - not sure if this helps or not, but at least it means you’re not alone!
Unsurprisingly with a statistic like this, managing Pain is a huge issue for people with SCI (whether it be from syringomyelia or trauma or stroke or transverse myelitis or Guillian Barre or whatever). I know of hundreds of people and their approach to pain mitigation varies widely. Some go down the traditional pharmacological route (i.e. Gabapentin/Pre-Gab/Tramadol/etc.), others use Cannabanoid-type drugs (official and un-official), others swear by acupuncture and/or massage. Some have used TENS machines and I know a few who’ve had their spinal column completely surgically severed below their level of injury in an attempt to try and help (results vary…).
Finally there’s a variety of the ‘mind-over-matter’ approaches, be it mindfulness or self-hypnosis or keeping busy or the opposite (i.e. staying super relaxed). My personal approach is the ‘keep busy’ one and perhaps contrary to a lot of advice, I find NOT talking about Pain helps a lot. It always seems worse when I talk about it which kind of makes sense because it’s making me more aware of it - like writing this response!!
So no easy answers I’m sorry.
@@NewZealandSpinalTrust This was a super answer, very informative and caring and helped heaps! But here in the US any shunting (AVP?) is looked down on for CM and Syringomyelia--is the surgical approach different there? All I know is my one spinal tap made me feel the most human in decades! There seems to be apathy on the part of our Specialists here when frankly the quality of our lives is often so very low, despite said techniques. We're not those "Take on the world!," portable disabled people see in the media, weather alone can grind us into the dust...
Hello Korina, I'm so sorry we share so very many things, I definitely struggle daily, as do you. 💞 I'm certain we both have huge toolkits for our suffering, and dark moments at night hopefully few understand. Two specific, personal things that have helped me at my worst: 1) Definitely prayer, in my case to Christ, with whom I've drawn closer because of CM/SM, and 2) frequent meditation of differing types, but especially at my worst practicing a version of Buddhist meditation called Tonglen, taking in the suffering of others and returning it with love. In this way I feel my suffering is for good, and keeps me focused on love and others at my lowest point. Everyone is different, but I wanted you to know I see you, and honor your journey. Best to you. 🙏❤️🌈🪶💞
I have x3 syringmyelia in my spine totalling 20cm
I also have trigeminal schwannoma (brain tumour) the size of a golf ball in Mickelson cave sitting on top of my brain stem and entwining into my cerebellum
My drs have not seen these two rare conditions together before
I am the only one in my state
I had no symptoms really just headaches from a very young age
They picked up both conditions after I was assaulted at work as a nurse
This is very emotionally and physically difficult
Syrinx most likely caused by years of physical beating by my "parents" the trauma caused to my body
I am an occupational therapist with syringomyelia
were you paralyzed from the SURGERY or the syrinx? ... idk if i should expect an answer
I spent three and a half years in a wheelchair and surgery got me out of it. I was a police officer and was hurt real bad in and on duty patrol car accident. I have trauma induced this am.
@@brt-jn7kg do u think ur syrinx came from the accident?
Now you can walk? So you didn't use wheelchair nowadays? So how was your surgery? And how are you doing now? Please reapply
@@Learnguitartoday syrinx is caused from trauma to the spine. So possibly yes the syrinx came from the accident.
@@homemagar3670 each case is different. I’ve had 3 surgeries on my spine. A shunt was inserted to drain out the fluid in the spinal cord. The first 2 surgeries didn’t go to good. The shunt wasn’t draining the fluid out. I was informed by the neurosurgeon to have another surgery. I declined and let it take it’s cause. I was mobilising on crutches & a wheelchair. I slowly deteriorated. The 3rd surgery a shunt was inserted in the spine. I am now wheelchair bound.