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Old 26-03-2018, 09:58 PM
KarenM KarenM is offline
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Default Harrington Fusion (1980s) Survivors - how are we all doing?

Hi all,

I had a harrington fusion for adolescent ideopathic scoliosis in 1987 at age 15. At the time, they were doing about 3 operations per week in North Shore hospital in Sydney; there must be thousands of us now in our 40s and 50s!

It was actually kind of cool going through the traumas of surgery and the post-operative adventures (anyone remember those horrible tipping-up beds?) with other teenagers.

I am currently going through more scoliosis-related challenges and wondering how everyone else is going?

At 45, last year, my on-off-for-decades back pain was joined by nerve sensations, nerve pain and nerve damage to the point where I have no reflexes in my tricep, I drop things and some days I can't walk straight. When the nerve pains are firing it's really something and it can't be treated with normal pain killers. I doubt I will ever be able to work full time again and many of the things that I used to love (like going for a bush walk) seem like they might be forever more out of reach.

The GP and neurologist were quite good at finding out what is wrong with me (protruding discs and stenosis and listhesis and arthrytic-thinga-majig and whatnot) but absolutely useless at understanding how my scoliosis has contributed or what my prognosis might be while they 'watch and wait' until the next surgery, whenever that might be. The ortho surgeons are likewise telling me to wait for as long as possible before any more surgery as the outcomes are not very promising.

I'm sure I can't be the only one having so much fun with my fused and scoliotic spine in middle age. I guess those of us who are doing okay don't feel the need to look for forums! I would love to hear from others, if you feel like sharing your story.

I just started to see a Scroth physio which I am sure will help. since I am fused from L2 to T6 neither of us is really sure how the exercises will go, I would love to hear if anyone else with extensive fusion has had any success with Scroth and I will post updates to this thread as well.

Hope to hear from you soon.
Karen
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Old 01-04-2018, 11:06 AM
Christine Christine is offline
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Default Re: Harrington Fusion (1980s) Survivors - how are we all doing?

Hi Karen!

So nice to see your post...I've been wondering why we are all so quiet these days. The website had some issues and I kinda gave up looking.

Sad to hear you are in all sorts of woes with your nerves playing up with your life and expect many of us will have that on the horizon. I hope that there is a solution. It is on my mind daily i.e. will I have another few years before something goes horribly belly-up with my back, or will it make me useless in ten...endless worry.

A quick round up; I was fused T4 to L1 in 2011 then thoracoplasty for the hump to end all humps in 2012. (lots more to read in my posts over the years) All good now, but have always had that concrete slab feeling and many other sore spots but very happy compared to pre-surgery days. I can't do big long days anymore and tend to sloth around the house after work. I only work 3 days now too, which helps. But at the end of the day I am very sore and in need of horizontal rest. I have just started up at the gym again (after a couple of years off) to help with ageing and pain (now 55 far out when did that happen!!!) but it is not helping a great deal. Maybe it is. Working with weights makes my neural system go haywire in my upper half. No idea why, but if I do any over-head work on the machines I can't sleep, I feel like there is something catching, or doesn't like being disturbed. My nerves all tingle (not unlike coming off morphine tingles) like my neck is out or something. Anyway I am just going soft on the exercise now but enough to stay strong and keep muscles from sagging.

I sometimes wonder that due to the fusion i.e. everything hardens up in our spines, it is stuck like that with no flexibility so that when we do stuff that we are naturally inclined to do (like lifting stuff over our heads, twisting, even dancing; arms in the air kind of thing) that puts any kind of strain on our spinal cord...it can tweak the neural system out of its comfort zone. Hard to explain. I guess to think of how long my back was twisted would be almost 40 years and my neural system was well and settled into living with a twisted spine, and then the invasive surgery would have surely unsettled things. But I swear if I go very gently and do nothing other than walking, and keep my arms down and not much overhead stuff, my back is manageable and nerves are ok too. But...the downside to walking is that my muscles get all weak then the hips, back, everything, hurts again. Just can't win!!!

My younger sister had a Harrington rod inserted in 1982? at 14 and she is a mega-fitness junkie and probably a bit too much. Her rod is the entire length of her spine and only now she says she gets a bit of pain in her lumbar if she runs too hard. But she has escaped any complications whatsoever, she says, due to working out just about every day. She still has quite a prominent hump, but it causes her no pain either. And she is super thin too, which I know helps. I keep my weight way down as it adds more pain if I gain a couple of kg. Her weak point is the point where the rod ends in her sacral area. The specialist said that the last time she saw him and hope it doesn't cause her any problem.

Apologies for a long rant but yep you are not alone in worrying about the later stages of life and it would be great to hear from the others who are older. My lower back is probably going to be my big worry...already arthritis is causing pain and it speaks to me daily. Gosh I wonder what a life without pain is like...

Happy Easter Sunday to you! I'm off to hide a whole bunch of cute teensy fluffy chicks in the garden for my 3 year old granddaughter to find
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Old 02-04-2018, 07:11 PM
KarenM KarenM is offline
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Default Re: Harrington Fusion (1980s) Survivors - how are we all doing?

Nice to hear from you, Christine, and good to hear you are back at the gym as well.

I am little bit jealous of your sister who is about 6 years older than me and isn't having any troubles from her harrington after 35 years. Like your sister I have always been very active, slim, fit and strong, so I don't think that could account for the differences. On the other hand i have been doing competitive windsurfing for 25 years, perhaps that wasn't the best choice of sports!

It's such a shame to hear about your nerve tingles after doing overhead work at the gym. It sounds like you might have some disc or bone issues in your neck that touch the nerves when you do certain movements. That proved to be the case with my upper body tingles. My physio showed me how to do 'nerve glides' for my arms (google it) and that helped a lot. Another practitioner is obsessed by the loss of lordosis in my neck (probably due to computer work) and has me lie with my neck on a rolled towel for a few minutes a day. I think that is helping too, because I can now go on all fours and look upwards without my arms pinging. If only it was that easy to solve the problems in my lower body...

Thanks for responding to my post, and thanks for sharing the good news about your sister and her harrington. I am looking forward to hearing from more people soon.
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