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Post by pringleman on Mar 23, 2014 6:08:57 GMT -6
Sorry to hear that Leah.
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Post by pringleman on Apr 13, 2014 6:40:51 GMT -6
Hello Tumour World, I am still here. Hopefully my tumours are not!
Had my post radiation MRI on Wednesday and I am awaiting the results. I see the Oncologist on Wednesday 16th April 2014 to see if there has been any regrowth. The whole situation is eerily following the quote from neuro-oncology above. It is likely that I will start chemo soon.
Woke up feeling particularly seedy and decided to have a ride. Took all available drugs and headed off to the local park for a ride. Found that there was a bike race on (a race I might add that I have been wanting to compete in for the 5 years prior to the emergence of the tumour but was not able to due to work commitments) so it was a tad frustrating to watch the healthy whiz by.
Decided that I had to head further afield. And when you live at the top of a hill that can only mean going down. Had a great whiz down the hill and then rode across the base of the hill and then headed back up. I did not set any records but I made it back and that is good enough for me.
So now the legs are humming and I shall pay tomorrow but for today I feel almost normal. I may not beat this thing but I am determined to go down fighting.
Off for a stagger around the block before bed.
Happy Easter.
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Post by pringleman on Apr 23, 2014 2:09:01 GMT -6
Hi there!
Time for an update seeing as I have some positive news. Got the results back from the latest MRI (10th April) and my spine is clear of tumour! No regrowth.
"Stable appearances to the cord resection cavity. No residual or recurrent tumour seen. Interval improvement in intramedullary cord T2 signal above and below resected lesion."
Then the bad news "There are degenerative changes present in the cervical spine. There is a right posterolateral disc protrusion at C5/6 which abuts and indents the right anterolateral thecal sac."
Was a terrible mess the day I had to drive in to hear the results. Had to go in on my own as my partner could not get any more time off work. Why they could not just ring up and say, 'Fine Fine Fine, my good man.' Is beyond me. So I had to drive 26 km through the traffic and then when I pulled up to grab a coffee discovered I had left my wallet behind. Luckily I had enough coin in the parking meter stash to pay for a nice flat white but I think paying in coins just added to the disheveled look and the zombie walk. I got some strange strange looks. Think they were all happy when I lurched out again.
The strange thing was when I was told it was all good was that I did not feel elated at all. I think I was so expecting to be told that it was back and chemo was on the menu that I could not respond in a cheerful manner. Pringleman was not Mr Positive I can tell you.
Started feeling better on Easter Sunday which was very appropriate. Now I have got to work out what to do with this third chance. Thinking a holiday might be in order.
How about a Ependymoma get together? I have some friends with spina bifida and they have semi regular global conferences. Does CERN do this? Anyone know?
Cheers and best wishes to you all,
Ian
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Post by pringleman on Apr 23, 2014 2:53:02 GMT -6
Whoo Hoo! I see that I am a Leader! Seems just like yesterday I was a Junior Member.
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Post by karen on Apr 24, 2014 16:51:05 GMT -6
What great news, Ian! I bet you are feeling more elated the further away from the appointment, it is hard to feel too excited with all that nervous energy coursing through your body.
Were those degenerative changes not noted in your cervical spine in previous MRIs? Even if not, could be just a different read by a different radiologist. At any rate, you have plenty to celebrate for now!
Cheers to no tumor, Karen
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Post by pringleman on Apr 26, 2014 7:04:17 GMT -6
Hi Karen,
You are a natural health professional. You are right the other MRI reports make a casual mention of it but it seems to have got bigger or at least the most recent radiographer has made a bigger note of it. The oncologist actually talked to me about it as well which has never happened before. I spoke to my physio and she reckons it will be why I have been having the pins and needles in my hands. I thought it was my tumour and the professionals said it could not be. I have yet to have a look at the images.
Have not really celebrated yet but having some friends over for dinner tomorrow and we have 2 bottles of bubbly waiting.
And how are you going? It is raining here and the cold weather has started so that must mean the leaves are growing and the warm returning. That must be giving you some new strength.
Cheers and Prost!,
Ian
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Post by karen on Apr 30, 2014 9:47:57 GMT -6
Hi Ian!
Thanks for calling me a natural. . . . I have my moments, but most of the time feel like I am faking it like everyone else. :-)
Does the oncologist think the degenerative changes in C spine are due to radiation? I can also tell/encourage you that if we took MRIs of the general population nearly everyone would have "degenerative changes", whether symptomatic or not. They are kind of like gray hair-an unfortunate part of aging and probably a definite part of spine surgery. My MRI makes the same notes in my lumbar spine, but not with the extra clarification of indenting the thecal sac. Not at all to minimize what you have going on, of course. Does the physio think they can help some of the pins and needles in your hands?
I am doing very well-just got back from a trip to San Francisco to see some friends and family, celebrate my birthday, and enjoy my last week of leave from work! Going back full time next week, feeling pretty normal! You are right, I live in Portland Oregon and spring is here full force. The sun and flowers and green leaves have been a very nice companion to this time of healing.
Hope you have embraced a celebrating mood some! Karen
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Post by pringleman on May 1, 2014 4:01:06 GMT -6
Hi Karen,
Happy May Day and Happy Birthday for last week. Glad to hear that you could get out and have a holiday. I am going to book one later this evening. I will have to get the atlas out to see where Portland and in fact where Oregon is. I am only really familiar with Colorado and Utah.
I have been in a celebratory mood. You put me to shame by heading back to work full time next week (what a great effort!). I spoke to my boss's boss today and said I would come back part time on the week of the 12th of May. He asked me what I have been doing: pilates, walking, riding, swimming... He said, 'That sounds like a holiday! Mind if we swap places for a week or so.'
Do not underestimate yourself. Again you have said more about my condition than the professionals I pay. The physio would not say whether I could improve my situation. I am sure it is part of aging and I have abused my back a lot in the past. When this all started and I had a simple x-ray, the radiographer commmented on the 'rusty spine' I have. I suspect my mountain biking, rock climbing, bushwalking with 30 kg packs and gymnastics have done a fair bit of damage. Least I don't have many grey hairs! Just not quite as red.
I have been a geologist for twenty years and I still feel like I am faking it. Back in 2007 when the mining boom was in full swing I went mapping with a graduate geologist. I corrected his mapping and pointed out that a particular rock was a rhyolite. He asked me how I knew. I looked at him and then at the rock and then said, 'I don't know. It is just the vibe.' I was feeling really at a loss and feeling like a fraud when he said, 'That is what Wally said.' Now Wally was the guru of the company. Author of multiple volcanology papers. If that was how Wally felt then I was doing ok. It was a confusing rock. Sometimes you just know.
I have been enjoying the autumn (fall) colours over here.
Cheers,
Ian
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Post by pringleman on Jun 7, 2014 2:13:29 GMT -6
Hi there Ependymoma Land,
Just realised that I have reached the 6 months post surgery point and all is still well. Improving weekly. Still not up to doing cartwheels and handstands but I am working on it!
Next MRI is July 10th.
Till then, adieu.
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Post by kurtymac on Jan 22, 2015 20:07:25 GMT -6
pringleman,
how have you been since your last surgery?
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