|
Post by youngyang on Nov 21, 2013 0:53:57 GMT -6
Radiation therapy doesn't necessarily have less risk. I got lots of bad sensation change after the radiotherapy, plus it totally failed to stop the tumor growth. It even grew faster after the treatment. So I guess different tumor responds differently so take your own risk.
|
|
|
Post by funnywalk on Nov 21, 2013 4:19:18 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? Hi Pringleman, your doctor should offer you a copy of your scan [you may have to pay for it] on a CD which you could then send to other doctors anywhere in the world if you want a second opinion. That is how I found my surgeon and I am so glad I did. My MRI also showed no gap at all, the tumour takes up all the space, so how any of my motor functions are still there is a mystery. But the laminectomy [removing part of the vertebrae] they will have to do to get inside the cord will release the pressure and give your cord a bit of space to breathe. The scar tissue will have the same function as the missing backbone but is a little less rigid. It certainly helped me by reducing pressure on spine, even though the tumour remains untouched. Some kind of symbiosis seems to be happening. I will know more on Friday 13th.....
|
|
|
Post by pringleman on Nov 21, 2013 21:29:26 GMT -6
I already sporting a triple laninectomy. Hopefully it will not be needed to be expanded to penta. So it is scar tissue that provides protection. I have been wondering about that. The specialist commented that the spinal cord like the brain and the liver has excess capacity so can keep functioning when major damage has occurred. It is amazing that we can still do things. At the start of the year I met a guy who had a truck accident and broke some vertebrae and the cord was squashed. He had full feeling in his legs and yet could not move them. I on the other hand was did not have much feeling but could move them. Bizarre. Will chase up on the digital scan.
|
|
|
Post by Leofwen on Nov 22, 2013 13:32:28 GMT -6
Hi Pringleman
Yes; Merry Christmas. But seriously, l hope all goes well.
I totally get where you are coming from on the consultation front and asking questions. I always write mine down and my hubby is great at asking stuff too. I wouldn't take my mum as she would be off on a tangent!
Perhaps leaches are the answer; they were good enough for Henry VIII, lol
Keep us posted and good luck
You are in my thoughts
Sue x
|
|
|
Post by margie04 on Nov 22, 2013 17:52:36 GMT -6
Hey pringleman hope your feeling better I know its hard and scary to deal with this. You are in my prayers and God will see you through this my friend. God bless and keep us posted please. Lots ogf hugs your way
|
|
|
Post by von on Nov 24, 2013 14:33:45 GMT -6
/hugs. Thinking of you.
|
|
|
Post by pringleman on Dec 4, 2013 8:09:34 GMT -6
Well folks they finally rang last Friday at ten to five pm to tell me that all is on for Friday (2 days from now). Got the pre op admin tomorrow and then have to show up at 7am to cue up for surgery. Bizarre going through this all again when it is so fresh in the mind from last time. Had the neurology tests on Monday morning. Was nice to catch up with the man as he is one of the best but I will be glad to stop meeting him like this.
Think I have been in denial since Friday. It was all waiting waiting and now all of a sudden it is all on. As Hairy Seagoon used to say, 'I'm too young to go, folks.' Father is in for surgery himself next Wed for suspected bowel cancer. Going to be a great Christmas all round. Well at least the Christmas cake is baked (and half eaten - don't put off till tomorrow what you can eat today!)
Hopefully I will be back online next week. Good luck FW for next Friday.
Love to you all.
|
|
|
Post by lw on Dec 4, 2013 9:37:51 GMT -6
Hi Pringleman,
Very best of luck with your surgery Friday. Funnily enough my op was also scheduled for 7am and I was glad to get it over with. When it's that early in the morning you don't have chance to think about it. I think that's the best way. Christmas will probably be a bit surreal for you but it will all hopefully be over by the new year. I shall be thinking of you and hoping for a good outcome.
Love to you too,
Leah x
|
|
|
Post by lw on Dec 13, 2013 8:32:40 GMT -6
Hi Pringleman,
Just thought I'd drop by to say I hope your surgery went well. Merry Christmas.
Leah x
|
|
|
Post by pringleman on Dec 23, 2013 23:41:57 GMT -6
Hi Leah, I am back! Thanks for thinking of me. The surgery went well. Better than last time but I guess they did not have to cut any bones this time as the holes were already there. So back home and can walk like a zombie. The operation started like a farce as the anesthetist team could not 'find a vein' to work. No kidding they had 6 tries (3 goes each for two of them - some rule they have) before I put my head up and asked 'Are you sure the drip is working?' I did not want any more holes in me. 'Yes of course it is.' was the answer but fortunately she had a look and found that one of the values above my head was switched off. So then they got it happening and then said we will put you under now. Then I got wheeled into the main room and I could see everyone getting ready - I could not remember this from last time so I spoke up again. 'Hey I am still here.'. 'No worries you wont remember any of this the brain will not record.' I looked around and then said, 'All looks pretty clear to me.' I could see my scans on the wall and the clock saying ten past 9. There was some mutterings and another gab in my arm. My vision started going blurry, 'Think you got it now.' Three downers post op: 1. They left 7mm x 7mm x 3mm still in me 2. Tumour now Grade 3 and highly aggressive so need radiotherapy and possibly chemo - got to have lumber puncture to see if there are any nasties metastasized 3. The monitoring went off during the op and the surgeon continued to get the tumour out (he commented later that it was huge and the pathology report states that they looked at several chunks that were in the order of 12mm x 4mm x 3mm and one that was 20mm x 20 x 5mm (so bigger overall than the first) So just taking it day by day. Glad to be out of hospital and at home eating real food instead of glup. Wishing you a Merry Christmas as well.
|
|