Dec 14th I had my 1 year post CK MRi and consult with the oncology dept (an assistant dr.) in Ottawa. MRI says that the tumour is now 80% dead. Showed mass blackening throughout the centre of the tumour. YEAH! One problem tho, I have swelling and edema surrounding the tumour. They don't know why. Can't explain. I called to ask about it and the same doctors who didn't show up for my consult didn't call me back about this issue either. I usually keep my posts here pretty standard and non judgemental. BUT, kind of hard lately with the lack of care that I have been receiving. Will say tho, Moira is amazing!!! :)
So, I have been on Decadron for 3 weeks now to bring down the swelling and edema. I have put on weight, my face is a swollen moon face of ugliness and I am bloated and can't sleep at night. Other than that, I am actually doing better being on the decadron. My voice is SO MUCH better so the swelling is going down leaving my 10th cranial nerve alone. My numbness is not as frequent. Yes, I was having trimignal numbness from the top of my skull down my face, down my neck to my shoulder. Spasm tingly numbness. Anyway, as I always say, nothing a good glass of wine doesn't fix. :)
1 1/2 weeks left on the decadron and we will see if my body stays feeling better. You know that saying "Treat your patients as you would want your own family member to be treated... ".. keep that in mind.
I did try to find a woman that I had been in contact with that had the same symptoms one year after CK as myself and was also put on decadron to bring down her swelling. Found her posts, followed them, then they dropped off. She was tired of the run around, the numbness ect... she died. Kinda concerned am I ? You bet.
So, I have been on Decadron for 3 weeks now to bring down the swelling and edema. I have put on weight, my face is a swollen moon face of ugliness and I am bloated and can't sleep at night. Other than that, I am actually doing better being on the decadron. My voice is SO MUCH better so the swelling is going down leaving my 10th cranial nerve alone. My numbness is not as frequent. Yes, I was having trimignal numbness from the top of my skull down my face, down my neck to my shoulder. Spasm tingly numbness. Anyway, as I always say, nothing a good glass of wine doesn't fix. :)
1 1/2 weeks left on the decadron and we will see if my body stays feeling better. You know that saying "Treat your patients as you would want your own family member to be treated... ".. keep that in mind.
I did try to find a woman that I had been in contact with that had the same symptoms one year after CK as myself and was also put on decadron to bring down her swelling. Found her posts, followed them, then they dropped off. She was tired of the run around, the numbness ect... she died. Kinda concerned am I ? You bet.
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