opinions?

Treatment options for UK & Irish members; including VHI & HSE criteria for funding and E112 Applications etc.
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: opinions?

Post by calluna »

Your logic makes sense! My PN wasn't caused by sitting, maybe I'd be thinking along those lines if it had been.

I find that the cushion I linked to - actually we have two, one with a cover which I linked to before, and one without a cover, this is cheaper, link here - these are the only ones that have helped in the car at all. They would be good on the train, too. Not so good on soft surfaces. Both the cushions are inflatable, they each come with a little pump thing so you can put more or less air in as you prefer. I got the silver one first, I did think long and hard before buying because it was expensive. But they look to be very durable and I would expect them to last a long time. I found out about this cushion on the forums here, donstore recommended it. I posted about it here - and donstore's original post is here. This cushion is also very portable, which is good. I am a convert, can you tell? ;)

I also use a memory foam doughnut cushion, a favourite pillow, and a Widgey pillow as well. Not all at the same time obviously! I do not sit without one of them.

And a 4 month waiting list in London? - ouch!
peaches
Posts: 53
Joined: Mon Sep 27, 2010 8:58 am
Location: West Yorkshire, UK

Re: opinions?

Post by peaches »

Hi

I'm also in the UK and visited Dr Greenslade in Oct 2009 after a long search to find out what I had, and he diagnosed PN. I agree with everyone here that lifestyle changes are essential. I avoid sitting as much a poss. I have an office job and now have a height adjustable desk and special chair that Dr G recommended. My company were very good about keeping me at work. There is also a little known scheme in the UK called 'Access to Work' under which your company can claim for a large part of the cost of any equipment you need to stay at work, but hurry because it may suffer with the government cutbacks! I now stand for most of the day and, although I'm tried at the end of the day, I can use up my 'sitting allowance' for the journey to and from work. It's amazing how you find ways to avoid sitting and in time it becomes second nature.

Good luck to everyone in the UK, we have little knowledge over this side of the pond, although awareness and medical interventions are growing for PN (largely with the help of Dr's like Gareth Greenslade, who are willing to take a special interest in us0.

Cheers
Peaches
PN diagnosed in 2009 by Dr Greenslade, Bristol
Symptoms for many years and numerous diagnostic tests
Currently controlled by meds - Venlafaxine and Lyrica
User avatar
helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: opinions?

Post by helenlegs 11 »

Hi all and special welcome to gentle_artist,
I wonder how many op's Dr Wong and Patel have done for pn now ? I haven't ever seen a post from a sufferer who has actually had surgery with the Bristol Team ? ? I will look forward to my next step which is a telephone consultation with Dr G on 6th April to see where I go from here.
As mine is piriformis and pudendal I would rather they'd had a couple of practices first :) Decompression surgery was an option on my report but I want my sciatic nerve decompressed too.
Did anyone here from John again? His shot with Dr Baranowski may have done the trick hopefully.
Take care
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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