Neuropathy

[BH1955]

I was in icu under sedation and intubated for 12 days after a quad bypass. The bypass went well but I had post-op complications. I had pneumonia, a collapsed lung, then developed sepsis. I also had kidney failure and heart arrythmia and needed cardioversion. After coming out of icu I had a pacemaker implanted. After being discharged from hospital I was recovering well after about six months when I started getting pins and needles in my legs and a burning sensation at night. It got a lot worse and now both legs below the knees are numb. An emg test 12 months ago confirmed that I had sensory nerve damage and poor to no reflexes. I'm on Pregabalin for the neuropathic pain which works well but I still find walking difficult because I can't maintain a good balance. I now have another appointment with neurology, next week.

I've read a lot of other people's experiences of neuropathy but I was wondering what people's experiences of visiting neurology clinics were like. What am I likely to be asked? Are there any other tests they can carry out? Has anyone ever got any answers as to what caused their neuropathy and whether it will get any better? I'm trying hard to think of all the questions I can ask to make the most of this appointment as it's been a long wait for it to come.

[Sepsur]

There are numerous causes of peripheral neuropathy - persistent excessive drinking, a side effect of diabetes, the after effect of certain ( often viral) infections, under & over active thyroid, a lack of vitamin B ( I think 12) & nerve damage caused by accident/ trauma/ comatose in ICU with acute muscle waste.

What happens when we lose all musculoskeletal muscle is that the nerves are then exposed & liable to be damaged as we are turned or proned for instance.

Can it improve - yes. Does it always improve - not always - sometimes the damage is too extensive.

Remember though, nerve damage repairs at a millimetre a day - so it’s a long process.

Magnesium can help with cramp at night too.

Dizziness is also a sign of neuropathy.

[BH1955 in reply to Sepsur]

Thanks for those comments. The explanation of muscle loss in relation to nerve exposure and possible damage during proning makes sense and gives a bit more insight than I've had so far.

[Gooddaysunshine]

Hello, I have neuropathy after being in ICU for 3 months. This was over the winter 2020/21, and I have long-lasting lung and heart damage, but in some ways they do not affect me in the same daily way that my nerve pain/tingling/cramping issues do.

So, regarding what tests may they ask you to do. The honest answer is that anything could happen. It depends on what doctor you get.

I have been asked to walk in a line with toe to heel in front of each other foot and then back again. I have been asked to take my shoes off and walk on wobbly mattresses. That was hard.

I have been asked to take my shoes off while they stick needles in my feet. I have been asked to count backwards in the 7 x times table and stand on my tiptoes at the same time.

They may also do small acupuncture-type tests. Funnily enough my tingling pain disappeared after these needle tests for a week or so. I hope it goes well... and as for questions I always say in any medical appointment: "What happens next?"

[BH1955 in reply to Gooddaysunshine]

Thanks for those comments. I've just tried the heel to toe thing and I was surprised that I just couldn't do it without falling over. Surprised because I can walk about, although I do look a bit drunk at times. I will write down the "what comes next?" question as that is always something I forget.

You have given me some food for thought, in your reply, and I now feel a bit better prepare, so thank you.

[Gooddaysunshine in reply to BH1955]

You are welcome and I hope it goes well. The toe-heel walk is hard, so take it at your own personal pace.

Like many on here you have been through a lot and taken a physical battering, and neuropathy is there as unexpected side issue, but it is very frequent among post-ICU patients.