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Post by pringleman on Nov 12, 2013 5:30:44 GMT -6
Hi Funny walk and Lw, well had my Christmas MRI chat to the aliens today and found the tumours have grown. Apparently they like it back there and one has tripled in size. Not bad for a slow growing tumour. So it looks like a holiday in hospital for me for Christmas. Got to find a new specialist too as mine is off on another 3 month holiday.
How is the head going Lw?
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Post by funnywalk on Nov 12, 2013 16:16:50 GMT -6
Pringleman, I am so sorry to hear this. What treatment have they suggested? Love, FW
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Post by Leofwen on Nov 13, 2013 13:32:37 GMT -6
Hi Pringleman
Sorry to hear your news. Hopefully you will get sorted with a new NS and treatment plan soon.
Keep us posted Best wishes Sue
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Post by lw on Nov 13, 2013 16:27:22 GMT -6
Hi Pringleman,
Glad to see you have kept your sense of humour despite such adversity. I'm so sorry to hear your news. Have they scheduled a date for surgery? Are they electing to re-sect all of them?
I've still got the headache and I'm now waiting for another referral. And so it goes on...
Do let us know how you get on.
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Post by pringleman on Nov 17, 2013 21:49:27 GMT -6
Hi Guys, trying to keep my head above water and your messages certainly help. Seeing a brain specialist on Wednesday morning at 7.45am. Also trying to get an appointment with a bloke on the other side of the country who is meant to be the best spinal specialist in Australia. Legs, while numb and heavy, are still working so still smiling.
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Post by Leofwen on Nov 18, 2013 1:41:56 GMT -6
Hi Pringleman
Good luck for Wednesday.
As LW said, glad you still have your sense of humour.
S x
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Post by gordy1 on Nov 18, 2013 5:20:05 GMT -6
Hi Guys, trying to keep my head above water and your messages certainly help. Seeing a brain specialist on Wednesday morning at 7.45am. Also trying to get an appointment with a bloke on the other side of the country who is meant to be the best spinal specialist in Australia. Legs, while numb and heavy, are still working so still smiling. I would guess that you live in Perth then? Logic being that if you're in Australia the specialists all live over East.... I'd be interested to know who you are referring to...we may have taken my son to see him... Good luck on Wednesday morning.
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Post by pringleman on Nov 19, 2013 6:41:36 GMT -6
You are correct, Gordy1. I live in Perth, up in the hills. Very nice apart from the lack of highly trained doctors. I am seeing a Mr Myron Rogers next Thursday in sunny Melboure. Got the local appointment tomorrow. It is possibly psychosomatic but things are rapidly changing for me. Amazing how things go from bad to bloody aweful so quickly. Just like 18 months ago. One Saturday I won a bike race after 10 days lazily riding around New Zealand on holiday and then the next day I woke up with a sore back, two weeks later I could not tell hot water from cold on my chest and was battling to walk. Did you fly your son to Baltimore for radiation treatment? I saw your post about getting Jello's views. Will let you know how tomorrow pans out. Love and light to you all!
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Post by funnywalk on Nov 20, 2013 10:03:14 GMT -6
Hi again Pringleman, would love to hear how your consultation went. Did you bring a friend with you? I find we have better recall of what's said and we ask better questions if there are 2 of us. As there will be, when we meet my radiotherapist to chew over my MRI results on -ha ha - Friday 13th!
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Post by pringleman on Nov 20, 2013 20:46:10 GMT -6
Good Morning Funnywalk et al.,
Well I saw the local man yesterday and have signed up to have an op some time soon. Do not know when the operation will take place as they need to co-ordinate the team but it will be before Christmas. Merry Christmas to me! Had to finally tell my parents as they were busily trying to co-ordinate everyone for a feast on the beach in Melbourne.
I went to my appointment on my own as it was early (7.45am) on the other side of town. And I also have mixed feelings about having someone with me. My brother came to one, my girl friend came to one and my parents came to one also and while they do ask extra questions and remember different comments afterwards I feel I do not get to ask the questions that I want to ask. Looking at the scans and being how bad it is makes me shell shocked and slow. What I would like best is to tape it but although I have not tried this I suspect the specialists would either clam up or not want it on.
The guy yesterday was good. He actually showed me the scans on the computer. It amazed me the other two specialists just used the physical photoscans (what ever the real term is). Anyway the tumours have stretched the spinal cord into a thin wrapping. There is no white space around it at all. He seemed amazed that I was walking and could still feel him scrapping his white poker down my leg. Seems a tad primitive this method of 'measuring' response. I wonder when they stopped checking urine in a flask and putting leaches on you back.
Are you considering some form of radiation therapy?
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