What's wrong with me?!
Discussion
Prizam said:
Ross, Waw!
What a thread! So glad your doing well and so glad its all documented on here for the world to see. Really is an eye opener.
I cant compete with the 12c, but if you want a spin in a Chimaera im sure something can be arranged.
Hope and pray you continue to get well. Keep the updates coming
Love a TVR What a thread! So glad your doing well and so glad its all documented on here for the world to see. Really is an eye opener.
I cant compete with the 12c, but if you want a spin in a Chimaera im sure something can be arranged.
Hope and pray you continue to get well. Keep the updates coming
of you ever find yourself near Southampton..... 
I'll upload a few pics tomorrow when I get the chance. Need to blank the number plate and shrink the images as they're too large to upload.
A few pics as promised! Not all of them but a few....Please excuse the stupid glasses, tube from the throat and, most importantly, the stupid grin on my face.
I've been fortunate to have experienced some nice cars over the years but the McLaren 12C is now the favourite car I've ever been in
You can just about make out my 745i in the background....which is going to feel hideously slow later on today, as a friend is coming over and we're going to take it for its weekly run as I want to keep the old girl ticking over.
One thing that I must say about the 12C as well was how comfortable it was. It's been given a lot of praise in the press about its ride quality and I have to say it was very good...over rough surfaces or bumps it doesn't jiggle about at all. Someone had said (JC, if I remember) that it rides better than a Rolls Royce....I'm not sure I'd go that far but it is very, very good. I'd say it's a little firmer than my 7 series but softer then the current shape BMW M6 my dad has.....but then it'll outhandle both of those like they're standing still (especially my old boat!!!)
I've been fortunate to have experienced some nice cars over the years but the McLaren 12C is now the favourite car I've ever been in
You can just about make out my 745i in the background....which is going to feel hideously slow later on today, as a friend is coming over and we're going to take it for its weekly run as I want to keep the old girl ticking over.
One thing that I must say about the 12C as well was how comfortable it was. It's been given a lot of praise in the press about its ride quality and I have to say it was very good...over rough surfaces or bumps it doesn't jiggle about at all. Someone had said (JC, if I remember) that it rides better than a Rolls Royce....I'm not sure I'd go that far but it is very, very good. I'd say it's a little firmer than my 7 series but softer then the current shape BMW M6 my dad has.....but then it'll outhandle both of those like they're standing still (especially my old boat!!!)
Just had the swallow test and they are absolutely astounded by the progress I've made and said I'm about where they'd expect me in another couple of months.... Let alone 3 weeks since my last visit. So that's all good.
They said I can build up to solid foods but my lack of tongue movement (which has improved) will be my limiting factor I suspect because it means I have to work my jaw harder so it'll get tired quite quickly.
Either way, extremely good progress by all accounts and they're going to speak to ENT because they think my trachy tube should be able to come out in not too long.
They said I can build up to solid foods but my lack of tongue movement (which has improved) will be my limiting factor I suspect because it means I have to work my jaw harder so it'll get tired quite quickly.
Either way, extremely good progress by all accounts and they're going to speak to ENT because they think my trachy tube should be able to come out in not too long.
KTF said:
Thats good news 
Is it getting better as the effects of the surgery wear off or because the brain stem is expanding back to a 'non-squeezed' state or a combination of the two - I assume it wouldn't pop back into shape after the object was removed?
A few things are happening. The main reason at this stage for improvement will be a reduction of swelling around my brain and brainstem. Is it getting better as the effects of the surgery wear off or because the brain stem is expanding back to a 'non-squeezed' state or a combination of the two - I assume it wouldn't pop back into shape after the object was removed?
During the surgery some connections between nerve cells (synapses) will have been broken. It's up to those nerves to try and make new connections.... This is where age is on my side. The younger you are, the better the ability to do this (neuroplasticity).
The brainstem almost certainly wouldn't have gone back to "normal shape" after the surgery.... When you think the tumour has been there many years I suspect the brainstem will stay that way, or similar, for a good while yet. But what is different now I'd that there is no direct pressure onto the brainstem from a tumour. The difficulties in swallowing have largely been since surgery but it was noticed by me (and others) that I was beginning to struggle swallowing about 2-3 months prior to surgery and this was getting worse.
I have not once felt sick since surgery, something I must keep reminding myself of, as whilst who I'm going through isn't nice, neither was being sick every day with a constant bloated feeling. Quite amazing (if I may say so) that I was still working, running etc really.
E65Ross said:
They said I can build up to solid foods but my lack of tongue movement (which has improved) will be my limiting factor I suspect because it means I have to work my jaw harder so it'll get tired quite quickly.
Do you have a girlfriend as I can think of a really good, non NHS approved exercise for that. I've had a quick look and there's no advice sheet for it in my health promotion folder but it deffo will work that muscle group and us gaurenteed to end well for you. Oh and if you fancy getting the train up to Leeds I'll happily take you for a spin in my ford galaxy 2.0tdci.
dave_s13 said:
Do you have a girlfriend as I can think of a really good, non NHS approved exercise for that. I've had a quick look and there's no advice sheet for it in my health promotion folder but it deffo will work that muscle group and us gaurenteed to end well for you.
Oh and if you fancy getting the train up to Leeds I'll happily take you for a spin in my ford galaxy 2.0tdci.
Please don't be offended 8f I don't suddenly book the next train to Leeds Oh and if you fancy getting the train up to Leeds I'll happily take you for a spin in my ford galaxy 2.0tdci.
They have given me some exercises to do which I do. It's just a waiting game unfortunately but it's good to hear from the professionals that things are not 9bly heading in the right direction, but that they're doing so at a good rate of progress.
No real news to report of but I've developed a bit of a cold which is more than annoying! But I suppose worse things could happen
The only thing I've been doing is cleaning my trachy tube 2-3x more often to try and keep it clear which does seem to help my breathing.
My weight has not gone up which is a mild concern. Where it takes me about 3x longer to eat food I think my stomach is noticing it has food it in before it would have before, and my stomach has probably shrunk a little.... Meaning I get full on not-so massive portions. Ideally I'd like to gain the weight healthily but I've tried that to no avail so I must start having more chocolate and such like. What a shame!
I haven't got bored at home yet, but I'm sure I will. I've got back into reading and have been on the kindle a good 2 hours a day.
Tomorrow morning I have an ENT appointment so I'll let you know how that goes. I'm confident it'll go ok, although having a cold probably won't help my cause.
Immediately after I'm getting the train to stay at my brothers for 3 days and 2 nights.... I can't wait. A well deserved break/get away.
I had some treatment off my boss earlier, he's been so understanding and nice. I also saw 2 of my patients who were in for treatment with one of the other chiropractors there.... It was lovely to have a chat with them!
I hope everyone here is all good and enjoyed the weekend!
The only thing I've been doing is cleaning my trachy tube 2-3x more often to try and keep it clear which does seem to help my breathing.
My weight has not gone up which is a mild concern. Where it takes me about 3x longer to eat food I think my stomach is noticing it has food it in before it would have before, and my stomach has probably shrunk a little.... Meaning I get full on not-so massive portions. Ideally I'd like to gain the weight healthily but I've tried that to no avail so I must start having more chocolate and such like. What a shame!
I haven't got bored at home yet, but I'm sure I will. I've got back into reading and have been on the kindle a good 2 hours a day.
Tomorrow morning I have an ENT appointment so I'll let you know how that goes. I'm confident it'll go ok, although having a cold probably won't help my cause.
Immediately after I'm getting the train to stay at my brothers for 3 days and 2 nights.... I can't wait. A well deserved break/get away.
I had some treatment off my boss earlier, he's been so understanding and nice. I also saw 2 of my patients who were in for treatment with one of the other chiropractors there.... It was lovely to have a chat with them!
I hope everyone here is all good and enjoyed the weekend!
E65Ross said:
During the surgery some connections between nerve cells (synapses) will have been broken. It's up to those nerves to try and make new connections
Bad news is neurons don't recover. Once they're dead, they're dead.E65Ross said:
.... This is where age is on my side. The younger you are, the better the ability to do this (neuroplasticity).
Good news is this is true. Other neurons from nearby parts of your brain will adapt and start doing the extra work of the killed neurons. This is plasticity. Plasticity is encouraged by learning, either cognitive or physical. Even motor imagery (you imagine doing a simple physical task) will encourage plasticity. So keep your brain working.Forget about your weight for now it will return when you start challenging your muscles again. You're doing astonishingly well.
Just a quick update, I'm rather busy in London over the next few days whilst visiting my brother.
Appointment this morning involved a discussion on how I'm doing with secretions and swallowing (my SALT therapist said she'd pop along and she kept to her word) and when I said I was eating normal foods he was amazed. SALT therapist then said backed that up saying swallow went from "zero to hero" in hardly any time at all.
I also had another camera down my nose, it doesn't hurt at all but it does make the eyes water a bit.
Cut a long story short but I'm being admitted to hospital next Tuesday, they're blocking the tube and will monitor my oxygen levels and keep me in overnight. If they're ok, on that Wednesday the tube will come out.
Because I'm eating normal food and using the peg only, really, to flush it, the consultant is going to chat to gastro and dieticians to discuss peg removal as well.
Appointment this morning involved a discussion on how I'm doing with secretions and swallowing (my SALT therapist said she'd pop along and she kept to her word) and when I said I was eating normal foods he was amazed. SALT therapist then said backed that up saying swallow went from "zero to hero" in hardly any time at all.
I also had another camera down my nose, it doesn't hurt at all but it does make the eyes water a bit.
Cut a long story short but I'm being admitted to hospital next Tuesday, they're blocking the tube and will monitor my oxygen levels and keep me in overnight. If they're ok, on that Wednesday the tube will come out.
Because I'm eating normal food and using the peg only, really, to flush it, the consultant is going to chat to gastro and dieticians to discuss peg removal as well.
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