ependymom C5-C6

[karin]

I am a lucky girl as I make up my balance. As life was given to me a second time.

I live in Belgium and in May 2011 a interdural ependymom was removed from my spine. It was located at C2-C6.

Within 5 days I was able to walk although little steps. And went home after 2 weeks in hospital.

In total I stayed at home for 4 months, took up my job at 50% and after a year I started work 75% which I still do.

Full time working is not an option.

The fact is every second awake, I am reminded of what happened to me 3.5jr ago.

And I would like to cross check with you out there what your 'remaining’s' are? :-) to compare and find out what 'normal' is. What your solutions or methods are to make things acceptable. So I would like to launch a poll, somewhere next week.



In the meantime I wish you and your family and friends a splendid feast at the end of this year and take a good start in 2015



Karin

[karin]

Dear all,

Today is not a good day. Yesterday flow in combination with the lef-overs from an enpendymoma C5-C6 resection may 2011.
From day one when I got the news, I stood up and kept my head up high. And managed to do so ever since.
I know I am a lucky girl as I was walking back within 4 days and the thing inside me was completely removed and above all it was a grade II.
My neuro and 2 years later a revalidation medicine (specialized in paraplegia which could have been the case) told me there is no therapy for the damage made by the surgery.
Yes, I followed some balance therapy, specialized aqua things in a pool, went to the gym, took up tennis, started running etc. but nothing changed
The pain for which I take Cymbalta in the past Lyrcia/redomex is bearable. Now and then I take some drops Tramadol at night if it the hurts too much.
I can write down a long list of things that have chances since then in my body, things that I have to accept in silence. And it is my choice to do so, because’ Life’ has been given to me a second time and I do not want to burden my surroundings. Things are what they are and we must move on, or am I wrong?
And so I get remarks on 20kg extra I carry around since then. People see me laugh all the time, they are positive about my energy etc….
On the other hand I receive from everybody well meant remarks and suggestions: why don’t you this, or that…. Grrrrr
I know it is hard to understand for an outsider. And I do not want to repeat every month the same thing to my family.
So I have the flow, much better then yesterday  otherwise I would not be able to sit behind my pc.
I want to hear from you not for comfort, I will find my energy back in no-time, but tell me your little miracles to take away your discomforts. Although I part of different blogs, site and facebookpages, maybe I missed my perfect solution ….

[das]

The resection of my tumor was accomplished in May of 2011. Annual MRIs have shown no new tumor growth, however development of a syrinx has got me worried. I live day to day with my left leg totally numb from the surgery. No one knows how I feel or the worry I live with.

DAS