A transcript from my posting on the Welcome to new members page....

"66 years ago I hit the deck along with a twin sister and 4 years later I was a statistic of the Polio epidemic that was sweeping parts of Australia.
At that time I was in bed for months and to this day I could not get a direct answer from family if I was affected by polio or some other disease.
26 years ago I was diagnosed with "Post Polio Syndrome" and joined the "guinea pig" programme in NSW researching into this new condition. From the waist down the symptoms were all there...burning feelings, numbness, fatigue, cramps and aching all in the lower limbs. Neurontin and Madapar seemed to help for awhile but of late it did not seem to work at all and I went off medication.

Perhaps it was a condition of PPS and I just had to get use to it. It was a case of my perception of 'normality' on pain control rising every day to the point that I had no idea what 'normal' was.

A new GP and a different approach. He sent me to a Neurologist who conducted nerve studies and other tests and also arrange for me to have an MRI of my spine and brain.
That was the game changer.

The neurologist said that I definitely did not have Polio as a child but I did have the biggest arachnoid cyst that he had ever seen. The cyst measures 10.8 x 10.6 x 5.6 centimetres and takes up quite a chunk of my scull and is pushing the brain well over to one side.
Time will tell if surgery on the cyst will alleviate the pain and other conditions I have been putting up with for years. The pressure pain in my head has certainly intensified over the past few weeks and the neurosurgeon is still 6 weeks away.
Has anyone else had a cyst this size and what were their symptoms?"

3 weeks ago (1st May) I had surgery on my Arachnoid Cyst in Sydney. When I had woken enough after the surgery to understand and remember what was going on I noticed my feet and I could wriggle my toes. It felt different and strange and then it dawned on me that I had absolutely no pain in my legs. They felt light and I could move them. Over the next few hours I realised that I had no pain from the waist down and I felt different. No cramps, no burning feelings, no loss of balance, no difficulty in swallowing, I just felt like a new man.
3 weeks later my body feels so different. So different to the suffering that had been building up over 26 years. I had even taken walks down the dark side and had I not had the surgery then I may not have been around now as the pain was too intense.
Apart from a great team of medical people I also owe my life to the invention of the MRI machine. How different my life would have been and how different thousands of other peoples lives would have been had that machine been around 26 years ago.

I know that I am a very lucky man and perhaps now I can start to live the life I missed out on.

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I am glad that you feel normal again. Now go have some fun and enjoy your life. Sometimes we get that second chance to live fully. Glad the cyst is gone and your pain. ginnie

I'm happy to hear your pain is gone. Squeeze joy out of every moment and go do stuff!

Peace and wellness,

Jace

I wish Jace that I had a cure for you that is effective as mine has been.
You appear to be positively focused, so keep going with the +VE attitude and perhaps one day your helicopter may hover above the cloud of trauma that surrounds you at present.


Take care....Gregg

Gregg,

Thanks for you kind words. I love to hear about people that have been given that second chance. Keep in touch and share some of your adventures. I would truly love to hear about them!

I learned in my late twenties to go get what I want and never let fear hold me back. Wow I've had great fun in my life. Great, great times with my husband and daughter, family and friends. No regrets. I hope I can continue to find new adventures that work with my disabilities.

The only activity I did not get to that was really on the tip of my brain a lot was sky diving. My hubby just could not handle the what ifs. I respected that. He was coming around but not in time. I would love to feel that feeling of adrenaline, fear, excitement, curiosity, accomplishment and to soar like a bird.

Maybe someday. Keep in touch Gregg!

Jace

Gregg, how are you doing nearly 6 months later?
I truly hope everything is going well for you and you're finally doing a little catching up.

Hi Lara,
Things are not at rosy now as they were a few months ago. Parts of my brain that control speech and balance are not working as they should and this means that I can no longer work , climb ladders etc.
Investigations are under way now to try and find the pathways that are working and what they control so should know something by the end of November. The belief is that it is the space in my brain created by the drainage of the cyst that is still adjusting.
So...I am positive about recovery and just need to stay focussed. I start an intensive physio/hydration program tomorrow to try and recover some of the lost muscles in my legs.......something to look forward to.

Will keep the group posted as progress results become known. Otherwise winter has gone, spring has sprung and I am looking forward to summer....Gregg

Yes, Spring has certainly sprung up my way too. In fact I think Summer's here early.

Well, I'm sorry to read you're having more problems.

Best wishes to you for the start of your intensive physiotherapy tomorrow. I hope it all goes well and it's great that you have such a positive outlook.

take care

Am I guessing that you live on the Sunshine Coast at Caloundra?