CSN Login
Members Online: 6

You are here

Suspecting peripheral nerve damage after colorectal surgery ...

NewToEU's picture
NewToEU
Posts: 2
Joined: Jul 2018

 

Hello to everyone here ...

It was on the 3rd of December 2015 when I underwent my right hemicolectomy operation, here in Ayrshire, Scotland; that was the day that I lost most of my sense of balance.  Over the time since then, two years and eight months, I have experience the feeling of being permanently "drunk", with the feeling of that "thick head" that goes with it ... I kid you not, and this has been without the benefit of alcohol!  This feeling of unsteadiness and mild sore head never gets better, but it sometimes does get worse.  I have been pretty much housebound over these thirty two months, only going out and about under certain conditions, such as when there is someone available to accompany me and act as a steadying hand, or when I take my walking stick and am driven by friends on short journeys that end up in places where I do not need to walk very much; 100yds in a straight line is a real challenge.  I previously did try driving, but even though I could do that, sitting on my butt, I didn't feel very safe, and anyway, I knew it was not the right thing to do, so, I do not drive any more; my Sweetheart of an Angel wife takes me wherever I need to go, in addition of course to those occasional social outings where my friends do the driving. 

In terms of medical investigations into this condition, which is one of a number that I have, practically no progress has been made in identifying what is the actual cause.  I have been scanned a lot; MRI scans of my brain show nothing out of place; CT scans all over my torso reveal zilch; I've also had a full body PET scan as well, but that was for my lung cancer, where nothing else untoward showed up anyway, and, the various consultants I have spoken to in the interim do not seem to have much of a clue; I appear to them as a medical conundrum, it seems.  Well, that was the case until I spoke for the first time, just the other day, to a lovely lady doctor from Hungary.  This lady said something rather simple to me after having me perform a particular test ... she got me to attempt standing on my toes, which was surprisingly okay for me ... then, she got me to attempt standing on my heels ... absolutely no chance, I was wobbling all over the place and reaching out for things to hang on to; the nice nurse who was also in attendance was particularly swift on her toes!

After this test, and after I had explained all that had gone on in the search for what might be the root cause - this being an account during which I mentioned in particular the MRI scans of my brain - she said "this is not to do with your brain, it about your legs, where probable nerve damage has also caused your chronic neuropathic pain" (I had also already informed her of those pains I had experienced in the past.)  The thing about this for me at the time was that, not one of the many doctors and consultants I had talked with before this, had ever come up with anything that was, quite frankly, so simple a test and diagnosis.  Things started to make sense to me after hearing this, inasmuch as I had previously and constantly been concentrating purely on potential damage to my brain, through some as yet unidentified means back then on the 3rd of December 2015.  It is worth saying that any form of damage to my centre of balance (inner ear related) was already ruled out very early on by an ENT consultant.

Having always tended to place a great deal of faith in the overall workings of the NHS (National Health Service) here in Scotland, I had previously felt no real motivation to go look for myself, to see if I, as a layman in the world of medicine, could search out effectively for myself a potential candidate for the cause for my complicated malady.  It was soon after that that I turned to being far more precise with my use of search terms on the internet; I started searching for very specific words and phrases ... I first of all typed in "neurological damage after colorectal surgery" ... lo and behold, the first document I looked at was a detailed medical paper on 'patients suffering peripheral nerve damage as a result of colorectal operations'.  This was gold to me, so, I looked a bit further and found, in addition to many other documents on this subject, this Cancer Survivors Network, which I promptly joined, as I have not previously been communicating with any fellow travellers on this cancer journey.  And so, here I am with my story, wondering if anyone else out there has experienced anything similar, and if so, what did you do about it?  In fact, I welcome any and all commentary on this ... I'm truly fed up with feeling the 'thick head of drunkenness' all the time ... in short, this whole affair has turned my life upside down, totally ... and I'm just a young 64 !!!

Kind regards to all ...

 

 

 

Annabelle41415's picture
Annabelle41415
Posts: 6306
Joined: Feb 2009

Sorry I'm not able to help you.  I've had many CRC related surgeries and some of them have left me with limited mobility in my hands for about 4-5 months and other symptoms, within about 6 months all symptoms disappeared.  You being in Scotland is a hard one to relate to as I'm not sure how you are able to get the testing that you want.  My doctor would send me to neuro surgeon, cardio specialist, internal medicine, etc until they get it resolved.  I'm hoping that you get an answer to your problem.  It's got to be a difficult situation.  I'm sorry that you are going through all of this though - it's sounds terrible.

Kim

NewToEU's picture
NewToEU
Posts: 2
Joined: Jul 2018

Hi Kim ...  Thank you for your caring message; I feel that you genuinely understand the issues I am facing.  This one is, and has been for sure, a life changer.  We do have a great health service over here, and it's all free, but even so, it comes down at the end of the day to 'who' you actually end up speaking to about your issues; there are a lot of inexperienced younger people now in our hospitals, due to many of the older doctors and consultants having retired; the feeling is that a significant number of these have just had enough!  That said, I've spoken to a whole range of consultants in various specialism's, but by far the most informed person I've talked to has been a Rheumatologist who happened to be Hungarian.  It's quickly coming up on three years that I've been staggering around here at home, and although I'm sadly used to it now, I must just say that ... I've pretty much had enough of it.  Thanks for allowing me to let off just a little bit more steam 

Wink

Be well and happy ... Tom.

SandiaBuddy's picture
SandiaBuddy
Posts: 959
Joined: Apr 2017

Is medical marijauna available in your country?  It has helped many people on this board.

Annabelle41415's picture
Annabelle41415
Posts: 6306
Joined: Feb 2009

We have adopted medical marijuana in many of the 50 states already and it has helped many people.  This might be a very good option for you.  

Kim

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I have neuropathy as a result of chemo as many others here have but I don't have any permanent issues related to surgery. I had a tick above my left eyelid for a few months and my plumbing has a problem (which I'll look into after reversal and recovery) but nothing that I'd called nerve damage. Have you been given any pointers as to a possible fix?

Subscribe to Comments for "Suspecting peripheral nerve damage after colorectal surgery ..."