News Just In.....

[Janepepper]

Are you all sitting comfortably? I doubt that but I'll begin anyway! So with the lidocaine infusion a wash out I'm back on the hospital treadmill to see what can be done. I am reluctant to have any more spinal surgery, not least because I have so much scar tissue that the last time they had to go in through my tummy. I'm scared to death of how they'd get in next time! So the hand surgeon decided that I should have an ultrasound of my hands and forearms to see if they can be helped without the need for cervical spine surgery. I have to travel to yet another hospital, (my 'Let's Go Guide to London Hospitals' should be out early next year), for a specialist sonographer. Right hand and arm done and he starts on the left. I'm daydreaming about how being a hand and arm sonographer must be one of the most boring jobs ever, when his exclamation of "Good grief", brings me back to reality. He goes to the phone and makes a call. Within seconds there are 3 other people in the room. Whereupon he explains to me that the main nerve in my arm that runs to the hand, well, in me, it doesn't! Of course it doesn't! What was I thinking! Normal bodies are for other people! My nerve splits and then splits again. The sonographer explains that in his lifetime he's seen a single arm to hand nerve split only twice. He's never, ever seen a double like mine. By now there appear to be about a dozen or so people all gathered around the screen and enjoying my abnormality. I asked the sonographer what it meant in terms of pain, usage etc. Rather too gleefully he told me that he had no idea as it's such a rare condition that there's never been any research into it. Super! The whole room looked askance as I started laughing. I had to explain that I am the woman who went into hospital for spinal surgery and came out with a brain tumour. How can I possibly be surprised that I have such a rare condition in my arm and hand that means that no one can make a diagnosis or a prognosis? So a 20 minute ultrasound took nearly 2 hours and will be of no practical help whatsoever! What choice is there but to laugh! Hey ho, onwards and upwards!

[nedd]

I cannot imagine how p. sssssed off you must feel.

You will be famous all over the N.H.S. now. No consolation whatsoever ever.

I hope that eventually things will turn a corner for you.

Hang in there with your sense of humour.

wishing you energy and throwing you positive vibes to roll with the blows life if hurling your way. And to help you climb onwards and upwards.

Ned

[Boozybird]

It's not funny at all Jane. But then you know that. A room full of medically trained people without the empathy skills to know how distressing it is to be a stage show for their entertainment! How humiliating for you! Where's the sensitivity?! Would somebody kindly tell these people that it is bad enough undergoing all this shit without being made to feel so uncomfortable. Jeez. Poor you! Hospitals are the pits! How are you feeling today? Best wishes. ❤️

[Calceolaria]

Jane, you're an inspiration!

[Heorte]

Thank you so much for sharing and I share your frustration and ironic sense of humour. At least now you won't be ignored. I had a similar experience with a medical peculiarity and it ensured quicker appointments _ not all bad then Lol

[sharelle]

Wow, have you googled the rare condition? You can tell them what they need to do then, which unfortunately is common with us pain sufferers!!

[Janepepper]

Do you know what Sharelle? I haven't Googled it! I usually do that straight away. I can't think why I didn't bother this time. Probably because I just know it's going to turn out to be a chronic, incurable, painful nightmare! Isn't it always? As I always so, it's a good job my shoulders are broad.....just a shame my backside is even broader!

[Hidden]

Hi Jane,what a wonderful,strong lady you are,with a great sense of humor! I really admire you.

It sickens me,that staff can completely lack empathy,but maybe that's there way of coping,have you thought of raising the issue with patient services?

Hang in there,when you're down,you can only go up!

Take care,with gentle hugs to you,Wendells xxx

[mitziblue]

Bless your heart!!! I'm so sorry for all you have suffered. Praying they can help you sweetheart!!! xxxx Mitzi

[Hidden]

Totally agree with everyone saying lack of empathy, but when something rare comes along Dr's become scientists and want to be part of the discovery. At the very least you should have been asked if you minded the discovery party.

Maybe there's some money to be made from being so unique by turning it around to your advantage - magazines love things like this, even TV - work your unknown never seen before nerve pattern and raise the profile of people with nerve pain and pain generally. What a rare gift to use to voice the concerns of many.