The Aword

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A Word from DocSarah
This web site aims to raise awareness of arachnoiditis by contact with other health professionals in various specialties, improve recognition of the condition, find better ways of managing it and reduce the number of avoidable new cases. We aim to inform people with the condition in the hope of improving their understanding and thus help them manage their lives with arachnoiditis. I do not give individualised medical advice, and I do not promote any specific treatment.

Top 5 Articles



1.Muscle Twitching
3.Prognosis of Arachnoiditis
4.Difficulty Swallowing (Dysphagia)
5.Pins and Needles
Survey 1 Survey 2 Forum


Lost in Translation?

Medical jargon is a real quagmire that can baffle people. Often terms sound very complicated but are actually simply Latin words describing what is happening. For instance the suffix "-itis" as in arthritis, arachnoiditis, spondylitis, etc. means inflammation of the affected part. "Arthr" is a prefix from the word meaning joint. Of course arachnoid is a term referring to the middle layer of the meninges (another foreign word) because it looks like a spider's web.

Apparently medical students increase their vocabulary by an average of 5,000 words during the first couple of years of undergraduate training. Many of the words they learn are of Latin or Greek origin. Of course, some patients might simply say "It's all Greek to me"! And sometimes the way doctors write, they might as well be writing in hieroglyphics for all the sense they seem to make!


Death is not the enemy

"Death is not the enemy, doctor, inhumanity is"

My aunt died recently and I went to her funeral last week. It was a sad occasion but we celebrated the successes she'd had, especially in her younger years. Latterly, she'd suffered from dementia and cancer and was in a nursing home for 5 years. She had a 'good death' : she was peaceful and painfree at the end and well cared for and passed away with her daughter present.

In contrast, I heard today about a young man of 23 , usually hale and hearty, but had a 'flu like illness and was diagnosed with leukaemia. He died a day later: a terrible shock for family and friends. He'd just finished University and seemed to have a long life ahead of him: but it was not to be. He had enjoyed a wonderful post-Uni summer holiday with his friends.  At least he was spared a long and devastating illness with difficult treatments.

Two deaths, one most untimely, the other a happy release...


Muscles with a mind of their own!

Muscles with a mind of their own!

I went for EMG testing of both my internal pelvic muscles and my gluteals (buttocks) and finally got numbers to corroborate the fact that (a) I can't feel anything (b) I can't move anything voluntarily and (c) the muscles stay permanently tensed up. I only have a tiny amount of 'useful' muscle contraction. As the tester said, "Your muscles are in a world of their own, aren't they!" I thought "No kidding, I've only be trying to tell docs that for years!"

So fortunately she has realised that biofeedback is a pointless exercise, in fact she went so far as to declare it would be 'cruel' to make me do it. I am going to try a little external stimulator gadget, although I am still unsure how that makes the muscle relax. We shall see. If it doesn't work, she reckons I am a good candidate for a sacral nerve stimulator which could make a real difference to managing the problems I have (just got to get funding....!)

A stimulating topic?

I mentioned a sacral nerve stimulator in my last blog and want to clarify what it is...and isn't.

SNS is a gadget that is implanted to send electrical impulses to the sacral nerves. It is not a spinal cord stimulator (SCS) although the technology is similar. In SCS the electrodes are located adjacent to the spinal cord and are tuned to send an impulse to block pain signals (like an internal TENS machine): so a sensory effect. SNS is for stimulating the sacral nerves to assist with the function of pelvic muscles so has an effect on the motor function.

Although both are implanted foreign bodies and carry certain risks (e.g. infection, nerve damage), the risks are higher with SCS. I must stress however that both SCS and SNS should be regarded as highly specialised treatments used as a last resort. SNS in particular is only indicated for very specific problems.

In the UK, getting funding for trial and then implantation can be difficult and is only granted by PCTs (Primary Care Trusts) in what they term "exceptional circumstances".



Denial...not just a river in Egypt!

It's a funny thing, trying to get the balance right between accepting your limitations and pushing yourself to overcome them, either refusing to accept them, or denying they exist in the first place.

Denial is a coping strategy lots of psychologists think is a problem, but for many of us (myself very much included) it can be a way of life.  Research suggests that people with cancer who are in denial live longer...and I reckon that optimists get a lot more out of life than pessimists, who somehow always call themselves 'realists'. Personally, I think a little reality goes a long way!

So here's hoping for the best in all things, pushing the boundaries and maybe even a little sticking my head in the sand and refusing to accept my limitations


A rose by any other name

'A rose by any other name'... still has thorns!!!

Nerve pain can be really bizarre sometimes, and almost impossible to describe to people. For instance, having lightning, electric shock pains in the chest can be weird and seem to make no sense. I hear some people give these strange pains names, such as 'Doreen', and then their friends know when 'Doreen' puts in an appearance, what it means.

Personally I have Arnie, an irritating pain in the chest that takes my breath away and makes me feel as though Schwarnegger  is sitting on my chest; just breathing in an out is incredibly painful for a while. It does pass off. I also have Sylvester ('Sly') pain which is like Stallone wrestling with my guts and even Jason (Statham) which is my legs playing up.

I can't comment on the fact all these are male, 'action' actors! I haven't yet decided what the myoclonic jerks should be called, something irritating like Mr Bean perhaps?! Also the insect bites...any ideas anyone??


Curves in all the right places?

Can anyone tell me why adverts for diets still show slim people 'before' and airbrushed slim people 'after'...and that's even taking into consideration that apparently being on TV adds at least 10lb to what you look like!

Fact is, 95% of diets don't work in the long term...

As for BMI (body mass index) that's yet another number to depress us...and in my experience, isn't always as accurate as it is supposed to be.

My curves are subject to VAL rather than VAT: (UK: Value Added Tax on purchases) 'Valued Added Lumps' that is...and these days I'm built for comfort not for speed, but I still maintain, chocolate and wine are good for you :and yes, there is some scientific basis to this idea, not that that is my main motivation!!!


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