I'M SHARING MY DEAR FRIENDS STORY IN HIS OWN WORDS....
My Journey back to independence......
It all started in Dec. 2010 ...... I had finally landed a State job (painter) and was there for roughly 6/7 months, I had
always had back pain, but it was getting worse, so I visited my Dr. for a routine checkup and asked for an MRI of my back.
That scan showed what was first thought to be a lesion, but when the MRI with contrast was completed, it showed I had a
spinal tumor. After meeting with a few surgeons, I decided on one and had surgery on May 9th 2011. What was figured to be a
Meningioma, turned out to be a Juvenile Pilocytic Astrocytoma (JPA), a juvenile brain tumor most commonly found in the brain
or brain stem, but in rare cases grows in the spine. Mine was a WHO grade 1 benign tumor, thought to be there 30 + years.
A few days after leaving the hospital and going to rehab, it became apparent that the tumor/tumor resection had adversely
affected my right leg and foot, since it had grown not around, but through my spinal cord. It seems
the tumor had been doing its damage all those years, silently and hidden. So I made it thru rehab, but without much progress,
and continued to do rehab for the next 2 years, again without any noticeable change.
In August 2013, with my right foot now locked at 45 degrees, I had an external fixator device surgically attached,
this was about 14 pins thru my leg and foot, also the tendons in back of my leg were cut to release tension to try and correct the problem.
At first all seemed to be well, the foot came back to where it should be, but the movement of the foot in general didn't get any better, rehab
continued but honestly wasnt making any type of difference, over the course of the next year the foot has settled back to being locked, the
pain in the foot has become even more intense then it had been prior, the foot is dropping and turning inward, the color of the skin, texture,
just the overall look of the leg has gone downhill, all the while its been 3 and a half years of severe pain with no positive gains.
Here we stand in Dec. 2014, 4 years out from the start of this journey. My next step is early in the new year, I will undergo surgery to
remove the right leg/foot, most likely below the knee. The concensus is the foot will never be viable or work properly, the color and coldness
of the limb is very concerning and the neurological damage is unable to be reversed. I have come to terms with this decision and know that this
is my best chance of ever getting to walk, drive, go back to my job !! which I loved, and just give me independence again.
I want to be able to journey out and enjoy a hockey game, avid Flyers fan here, or drive myself to the store, and yes maybe even walk on the Jersey
Boardwalk again, just regain my life in some way thats been on a rollercoaster ride for too long. While I am a very proud person, and
never like to ask for help, I realize sometimes in life we have to, thats just life !!
Any donation made will be used for medical/living expenses I incur during the journey back, I greatly appreciate your taking time to read
my story, everyone have a Happy and safe Holiday season !! ..... Andrew.
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