Lung paralysis...no further forward

J

john-e89

Lifer
Hey,

Just keeping you guys that follow my whinging up to date.

Had an EMG nerve study test a couple of weeks ago, hell fire that was damn painful, electric shocks in the neck, they got so severe I nearly had to stop the guy, I don't look forward to any more of those... :x

Anyway, got the results yesterday, I had hoped they would tell me if the paralysed nerve will recover or not but they don't. They show a very small path of signal getting to the diaphragm, not enough to make it move, it's still static, so all I can do is wait and by the end of the year there 'should' be some improvement in breathing if it's going to recover. What's annoying is we're 4 months in with no benchmark, I don't know if there's been any improvement in that time, certainly my breathing is no better, to my mind an EMG test ought to have been done immeadiately post op giving something to compare to now. The electrophysiologist has just said he's hopeful of a recovery but there's no way of knowing really. The one good thing is he didn't absolutely rule it out, how much experience he has of phrenic nerve paralysis I don't know. I'm going to try to see a prof at the Royal Brompton in the London to get his opinion, he appears to be the top man in his field.

So it's carry on waiting not knowing anything, tbh it's getting a bit depressing, I'm trying my best to stay positive but I'm not in a good place just now, hopefully that's a normal phase and I'll drag my sorry chin off the floor soon.. :roll:

Sorry for the moan but I feel crap so why shouldn't you bear the brunt of it...... :wink:

Just kidding, cheers guys. :thumbsup:
 
Thanks for the update John, you're in a tough place - puts many of our petty little concerns into perspective. Hang in there fella.
 
Top hospital that John..........I'm a customer there too.......I wish you a full and speedy recovery
 
Nerve damage can take up to a year to repair which is a long time. I do feel that in the field of medicine that the Americans are ahead of the game. Here is an article which describes a case where removing the scar tissue around the cut ends and using a donor nerve fibre to repair the nerve. https://connect.uclahealth.org/discussion/phrenic-nerve-injury-davids-story/
 
raymond.harper said:
Nerve damage can take up to a year to repair which is a long time. I do feel that in the field of medicine that the Americans are ahead of the game. Here is an article which describes a case where removing the scar tissue around the cut ends and using a donor nerve fibre to repair the nerve. https://connect.uclahealth.org/discussion/phrenic-nerve-injury-davids-story/
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The difference with David though Raymond is his trauma is in his neck, where the surgeon can get to the damaged nerve and do a bypass from the heel. As far as I can find out, which is very limited, you can't do a bypass in the thoracic area where my damage is, be that from it being too deep or risky as it's directly behind the superior vena cava, I don't know. Hence I want to go to the Brompton to get some info from someone that might know.

Thanks for the post though. :thumbsup:

Cheers Marlon and Slick. :)
 
Can't imagine how that feels or what you are going through.

Nerves are funny things - my tongue hasn't recovered from wisdom tooth surgery several years ago, but I can put up with mild tingling if it stays mobile!

Hopefully things will start to improve for you soon, fingers crossed for you.
 
Marlon said:
Thanks for the update John, you're in a tough place - puts many of our petty little concerns into perspective. Hang in there fella.
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Well put Marlon.

John, I'm sure you will emerge from the other side of this soon. :thumbsup:
 
Blasted nerves are very unpredictable. Have seen in my career that just like you say, no one is prepared to commit to a decision as in truth no one really knows what the outcome will be. One thing I am sure of though is that sleepy nerves need 'rebooting'.

Did the electrophysiologist suggest any exercises that may help?

Finger crossed for you old friend.

Cheers Arif :D
 
Marlon said:
Thanks for the update John, you're in a tough place - puts many of our petty little concerns into perspective. Hang in there fella.
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I'll second that :thumbsup:
 
I've been secretly working on something that might facilitate your unfortunate predicament john, at least from a mobility perspective. It has the m52tuB25 engine from benny, my dearly departed e36 coupe, as well as flybywire throttle input, incontinence-compliant seats, auto gearbox and a radio permanently tuned to radio2.
We'll need your input at the concept development gate stage 1 meeting however. How's your agenda looking for the coming weeks....? :wink:
image.jpeg
 
Easy to say I know, but keep your pecker up John, you've been so positive up to now.
One day at a time :thumbsup:
 
Best wishes John and hang in there, there will be good and bad days but take heart the good days will overtake the bad and its always good to have a good old moan :thumbsup:

Tim.
 
maxman said:
Sounds like you are having a shocking time ,I have this picture in my head of this IMG_0344.JPG
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:lol:

I keep wanting to use the defibrillator at our village shop to kick the nerve up the arse... :thumbsup:
 
JustCruzin said:
Blasted nerves are very unpredictable. Have seen in my career that just like you say, no one is prepared to commit to a decision as in truth no one really knows what the outcome will be. One thing I am sure of though is that sleepy nerves need 'rebooting'.

Did the electrophysiologist suggest any exercises that may help?

Finger crossed for you old friend.

Cheers Arif :D
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Yes I'm waiting to hear from a rehab place newly opened in Rotherham Arif, they want to try some physio to help move the static lung a bit to avoid infection. :thumbsup:
 
Chris_D said:
I've been secretly working on something that might facilitate your unfortunate predicament john, at least from a mobility perspective. It has the m52tuB25 engine from benny, my dearly departed e36 coupe, as well as flybywire throttle input, incontinence-compliant seats, auto gearbox and a radio permanently tuned to radio2.
We'll need your input at the concept development gate stage 1 meeting however. How's your agenda looking for the coming weeks....? :wink:
image.jpeg
Click to expand...

:rofl: Bloody incontinence-seats you cheeky chuff Chris...

You'll need to swap to a manual though mate, enjoying this E85 manual a LOT.... :D
 
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