My life as a 'clubbie'


This is quite detailed for the purpose of specifically describing my club feet journey - so others can relate. 


I was born in 1970 in New Zealand with bilateral talipes equinus varus - AKA Club Feet. My right foot was severe - left, mild.  


As I can't remember much(!)- here is my Mum's words on the first 5 years:



First manipulation when you were a few hours old.. Your right foot was inverted & up on your inner leg, it was manipulated, tension broken, pulled down into position! leg was strapped to 2 "iceblock sticks" then put in a light weight plaster. Your left leg was nowhere near as bad, never required surgery, only plasters.


This plaster was changed every 2 weeks in the first few months, then both legs plastered by 8 months.   Plasters for positional reasons, then a soft tissue release @ 1 yrs old..


Age 4 was your big operation,  Here the ankle bones were aligned, a BK wire put thru to straighten them, the soft tissue further released, the BK wire removed (I do recall this!!) and then in plasters again.  There were months when you were out of plaster (skin a mess), you wore boots with a bar which we had to adjust (Thomas Browne splints).  This is when we (Dad) started the massage on your leg.


Twice weekly Middlemore Hospital outpatients visits, then monthly as you got older.  We acquired a baby walker like a wee swing seat on a wheeled frame & removed all our carpets & had polished floors so you could get around.  It was hazardous as your brother & sister pushed you like a racing car.  I had to rescue you from their outside ventures often!

It was difficult for you to crawl, so you sort of bum crawled.  Bathing you was a ritual. I had a change table in the bathroom, so you could be part of the others in the bath. it was a body bath with highjinks.  

We used to cut your plasters off the night before change ( helped myself to plaster cutters from the clinic oops!) Dad would massage your leg & I would oil your skin.  When you were out of plaster, & wearing the boots at night. I had to be ready to take them off when you woke or you would belly crawl into us scraping the bloody boots (I hated them) along the floor. I always felt that the boots hurt you, it was the only time you protested, but was it the restriction?  

After plaster clinic you would quietly sit in the bean bag surrounded by your books & puzzles happily staying put until the plasters were dry.  We just adapted everything to include you .  Dad carried you in a back pack, he had some leather moccasins made for you.  Our big excitement was when Club Foot Clinic after your major reconstruction, said you could wear shoes to start school. ( 2pairs to get a pair fitting)  No more plasters!!!!


So I think they did a pretty good job and I feel lucky compared to some cases - Mum was a nurse and insisted the best care for me. Dad massaged my feet/legs alot and I know that helped immensely,  They always made it possible for me to be included in everything,


So, from @ 5 yrs old and up until my mid 30's. I led a relatively active life - still with pain, swelling and limited ability, but it was just how it was and something I got used to.  I learned how to manage it. There were some things I just could not do.  I have 3 siblings and I could not always keep up - esp on the beach! 

The major problems, though began in my 30's, where degeneration of the ankle joint on my right foot along with arthritis started kicking in.  Never had any further issues with my left foot.

Around my early 40’s the pain and immobility got increasingly bad to the point where I went back to an orthapedic specialist to see if they could help.  At 43 yrs old, I had surgery again on the right foot - triple arthrodesis - fusion of 3 joints -  subtalar, talonavicular and calcaneocuboid.  My foot was also straightened (I suspect this caused the nerve damage I now have).  ‘Isolated’ it was a very successful surgery, but once one area is fused, the next joint's down the line start to cop it! (If it is in bad condition, which mine was).  When I started weight bearing after surgery, i felt acute pain, sharp pain – worse than before! 'New' arthritis had ignited in the navicular and cuneiform joints due to the reconstruction.  It wasn't technically 'new', but as the other joints were worse that's where the majority of pain was felt.   


My quality of life was declining, I was getting so fed up, in more and more pain and becoming less and less mobile – I was not living, just managing to go to work (sit down desk job), anything more I either couldn’t do or I would big time pay for later. A simple pleasant walk was out of the question.  I was missing out on so much and my vitality was low.  I was on anti inflammatories and pain killers, which in turn gave me stomach problems.  (Tried all the natural things too),  


Further fusion of the navicular cuneiform joints was suggested but this ran the risk of more stress and pain of the TMT and ankle joints.  NO THANKS!! - no more surgery, the recovery was huge and the prospective result not encouraging.

I was also informed that the actual ankle joint was going downhill and would require a complete replacement in the near future!



So my prospects were not good - more and more surgery and possibly heading for a wheelchair, I did not want this life.  I then seriously considered amputation., together with my orthapedic specialist, we had it as a viable option....................................................Then I saw a post on my club foot facebook support group, from the awesome Lisa Kramer, she had the ExoSym and her life changing success captivated me.


I then spent 6 months debating whether to go for it - so many questions, so many hurdles, the cost was high - $9k USD (@ $13k NZD) plus travel costs to the USA.  Would it work for me?  Is it worth it?  Surely a mere leg brace can't be such a game changer? and so on.........I spoke at length to 4 people around the world that were at different stages in their ExoSym journey's and ALL of them were extremely positive and encouraging.  So, I decided to GO FOR IT!!!


Then we decided to REALLY decided to go for it - Together with my family, we flew 7000 miles from New Zealand on 12 May 2015 - left our jobs, took our 9 yr old son out of school, rented our house and off we went on an adventure!.  Away for 6 months - first stop, Gig Harbor to get the ExoSym, then go a walkin!  We travelled around USA and Canada.  Half of our trip was staying and working on organic farms where we worked in exchange for food and board.  (So I have NOT been sitting down on the job!)  The other half has been travelling around and hiking the mountains of USA and Canada's National Parks - Totally amazing.


Some background stuff on pain: 


PAIN and inflammation pre ExoSym:


VERY LOW activity (just getting by with the essentials): 

acute pain: 4/10

chronic pain: 9/10

Inflammation: 8/10


Higher activity (anything more than above, for eg; small walk): 

acute pain: 20/10

chronic pain: 20/10

Inflammation: 20/10

You get the message!  No extras


PAIN and inflammation post ExoSym:

HIGH activity: 

acute pain: 0/10

chronic pain: 0/10

Inflammation: 1/10

UNBELIEVABLE!!!



EVERY day since getting it I have been WAY more active, my activity levels have increased 100 fold


What I have done since getting the device:


* starting with a week of intensive workouts at the Hanger Clinic including – treadmill; walking AND running (!), lifting heavy weights, squatting, shuttle running etc.

* LOTS of hiking (@ 5-6 miles average and sometimes for many days in a row, never could I do this!!!!)

* walking around towns and cities sightseeing.

* hard physical outside work; shovelling wood chips, hauling and dumping heavy rubbish, gardening, house cleaning.

* dancing and walking around music festivals for hours.

* running into the store - these are the little things that are actually HUGE..

* getting up to get things – my husband or son or whoever was around! I always had to ask to do/get things for me.

* outings - we can all park together and walk wherever we are going, instead of dropping me off etc etc.

* ZUMBA - so much fun!!!

* soft sand - walking with ease on the beach - magic


What is totally amazing though about even being ABLE to do all of the above, is that I have been able and willing to get up and do it again EVERY SINGLE DAY because I’m pain and inflammation free.


I am blown away with the result and I know others who have had it are too. My son and husband are really loving the new me – it has changed our lives really absolutely and will only get better as I get fitter and enjoy this long term.


I know and understand that it's expensive - I paid out of pocket with a loan against our home,  others have fundraised (see Lisa Kramers blog https://thechroniclesoftinkerton.wordpress.com/), others have got it on medical insurance.  

I am not a rash person, I really think about things and weigh them up and am skeptical about alot, esp as Ive had many solutions offered to me throughout my club foot life.  This was a researched and well informed decision.  I'm trying to make that easier for others by providing all this info, covering alot of the questions I was asking!!  


All I can say is - find a way to do it!!!  Of course this is after Ryan has evaluated you to be a good candidate.


To me it is worth EVERY CENT, honestly it’s hands down amazing, best money I've ever spent.


To be living pain free and mobile is an incredible gift that I am so grateful for every day.



.

Legs casted in the 1970's  - spent alot of time in this!

Boots and Bars (Thomas Browne Splints) I had to sleep in as a child:

My foot after triple fusion and straightening  at age 42:

First walk in the ExoSym - pure JOY!!:

One of my first big hikes a month into having the ExoSym - 6 steep miles - no pain before, during or after - AMAZING!!!  (Lake Atlin, BC, Canada, July 2015)