[Gregg Kirkwood]

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 Madapah 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?

[Hopeless]

Dear Gregg,

WOW, I was blown away by your post. Wishing you the best. Is your surgery scheduled? Or just an appt. with the surgeon to discuss and set-up? Let us know how things go.

How wonderful if you can get relief and restoration of your life again.

[Darlene]

Gregg,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Here is a forum where you find some great friends to help you out. Just click on the forum. They are there for any questions you have.

http://neurotalk.psychcentral.com/forum2.html

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[Gregg Kirkwood]

Dear Hopeless,

Yes, I was blown away also when I saw the MRI pics. At this stage it is an appointment with the surgeon and I hope he can do something quickly.
There is some relief in knowing that something else apart from Post Polio may be causing my problems.
I think it highlights the necessity early in life to have MRI scans. My neurologists said that if MRI machines were around in the early 50's how different the approach would have been in assessing correctly Post Polio against other diseases . He said that many people have 'suffered' because of misdiagnosed symptoms.
One bright spark friend suggested that I have enough room to install a circuit board inside my skull!!

[Diandra]

Originally Posted by Gregg Kirkwood

Dear Hopeless,

Yes, I was blown away also when I saw the MRI pics. At this stage it is an appointment with the surgeon and I hope he can do something quickly.
There is some relief in knowing that something else apart from Post Polio may be causing my problems.
I think it highlights the necessity early in life to have MRI scans. My neurologists said that if MRI machines were around in the early 50's how different the approach would have been in assessing correctly Post Polio against other diseases . He said that many people have 'suffered' because of misdiagnosed symptoms.
One bright spark friend suggested that I have enough room to install a circuit board inside my skull!!

Yikes Gregg...kinda makes you wonder how long the cyst has been at that size.
You have half of it licked by having a sense of humor about it. I pray that the removal of the cyst alleviates ALL of your symptoms. Glad you joined in here. Please do keep us all updated on your progress.

I had a friend who was just about your age when she was found to also have a large benign cyst. She had been experiencing brutal migraines for 30 yrs. She had an MRI about 5 yrs in but nothing was seen so it was, just live with it. It was not until she passed out one day and had a massive seizure that they found it. She was a new person after the surgery, no more migraines. I wish you the same great success. Take care, Diandra

[Gregg Kirkwood]

Originally Posted by Diandra

Yikes Gregg...kinda makes you wonder how long the cyst has been at that size.
You have half of it licked by having a sense of humor about it. I pray that the removal of the cyst alleviates ALL of your symptoms. Glad you joined in here. Please do keep us all updated on your progress.

I had a friend who was just about your age when she was found to also have a large benign cyst. She had been experiencing brutal migraines for 30 yrs. She had an MRI about 5 yrs in but nothing was seen so it was, just live with it. It was not until she passed out one day and had a massive seizure that they found it. She was a new person after the surgery, no more migraines. I wish you the same great success. Take care, Diandra

Thanks for your comments Diandra, it means a lot. I did have a very nasty fall nearly 18 months ago and split my head open above the right eye and that is the proximity of this cyst. If the pain expands from this point on quickly then the fall could be the trigger, if not then it has been a slow build up since birth. It does explain why siblings think I have a "big head" Being tested for Post Polio did have some positives. During some testing the Drs discovered that I had Haemachromatosis (too much retained iron).That was easily brought under control and had it not been diagnosed then the outcomes now may have been more serious.
I live for the 'now' and the past has placed me in the 'now', what happens tomorrow is the challenge I wake up to every day.