Hi Helen,
Ive just read Mr Greenslades reply & i now think this man is now a god ! he couldnt have put it more eloquently " the veritable merry go round" it has been.
What a brilliant letter. Fingers crossed for you that things start moving. Wish i could see you Gps face when she reads it !
X caty
May be getting somewhere at last :)
Re: May be getting somewhere at last :)
Oh wow, Helen! That is wonderful news and I hope the beginning of a treatment program that will bring you some pain relief. Thank God for docs like Dr. Greenslade!
Best,
Violet
Best,
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: May be getting somewhere at last :)
Indeed girls 
I hope to hear the PCT's response to his letter this week, well that's what I was promised 2 weeks ago. They sited delays due to changes in some NHS administrative protocols (no clue what). . . . glad really as they now have Dr G's letter to add to my growing file.
I will ring on Friday if I have heard nothing by then.
I hope to hear the PCT's response to his letter this week, well that's what I was promised 2 weeks ago. They sited delays due to changes in some NHS administrative protocols (no clue what). . . . glad really as they now have Dr G's letter to add to my growing file.I will ring on Friday if I have heard nothing by then.
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.
Re: May be getting somewhere at last :)
How wonderful it is to have a national health service that is free at the point of use, and which treats all citizens( and even some non-citizens) equally, whether it's Prince Phillip or Joe Bloggs who lives down the road.
And yet someone in pain, with a restricted life because of the pain, struggles to get appropriate treatment, even having to jump through administrative hoops to have a vitally necessary operation in France-because it's not even available in the UK( unless you can pay the full price,of course) and then you can have it next week if you like.
It's just not right.It wouldn't be so bad if we weren't paying billions of pounds for the "service".
And yet someone in pain, with a restricted life because of the pain, struggles to get appropriate treatment, even having to jump through administrative hoops to have a vitally necessary operation in France-because it's not even available in the UK( unless you can pay the full price,of course) and then you can have it next week if you like.
It's just not right.It wouldn't be so bad if we weren't paying billions of pounds for the "service".
"if you want to keep a secret you must also hide it from yourself" Orwell
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: May be getting somewhere at last :)
Oh Alan don't get me started. . . my Mam (northern) has Altzheimers, now late stage but obviously her condition has worsened over the last 10 years. She now can't speak or do anything for herself unless prompted, say to eat.
Free at the point of use, LOL, Yes, they just won't let her USE it. She has been a teacher all of her working life and should be spending her retirement with my dad , but she has a disease of the brain (a very good brain too) and everything has to be paid for, shouldn't all of her taxes have paid, or at least go towards some of it? However the people who haven't worked, do get it free.
Any way rant done!
Still no word from the PCT will be on the phone tomorrow
take care,
Helen
Free at the point of use, LOL, Yes, they just won't let her USE it. She has been a teacher all of her working life and should be spending her retirement with my dad , but she has a disease of the brain (a very good brain too) and everything has to be paid for, shouldn't all of her taxes have paid, or at least go towards some of it? However the people who haven't worked, do get it free.
Any way rant done!
Still no word from the PCT will be on the phone tomorrow
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.
Re: May be getting somewhere at last :)
Helen, only just read this thread as have been absent from the forum as you know. Very sorry about your mum, that's a cruel ending to a life of giving to others and to have to worry on top of that about paying for her care is despicable.
Brilliant letter from Dr.G, I'm really, really pleased for you. And now that you have proper consultant backing, you can also wave that in the face of that delayed tribunal! Go get 'em girl...
Brilliant letter from Dr.G, I'm really, really pleased for you. And now that you have proper consultant backing, you can also wave that in the face of that delayed tribunal! Go get 'em girl...
PN, possible entrapment at ischial spine -Dr.Natasha Curran, National Hospital for Neurology, London.
2 -Xray guided double nerve blocks -Dr.Baranowski - no relief.
TP self-massage reduced piriformis pressure on p nerve.
Dr.Greenslade/Bristol:
CT guided block (left) 16.7.12- success! Could sit without a cushion! On a brick wall!
06/2/13 - Sit pain gradually returned, L3. Offered further CT-guided block, or an op. Had to decline at time.
Feb '15. Applying to be referred again to Dr G.
2 -Xray guided double nerve blocks -Dr.Baranowski - no relief.
TP self-massage reduced piriformis pressure on p nerve.
Dr.Greenslade/Bristol:
CT guided block (left) 16.7.12- success! Could sit without a cushion! On a brick wall!
06/2/13 - Sit pain gradually returned, L3. Offered further CT-guided block, or an op. Had to decline at time.
Feb '15. Applying to be referred again to Dr G.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: May be getting somewhere at last :)
Yes, she taught deaf children after being a primary teacher for years. She ended up head of service for the deaf for North and South Tyneside. She was constantly in the local papers getting phonic ears for children or raising funds. She would absolutely hate what she is now, but she hasn't a clue. C'est la vie but not much of one 
Love your new signature Yippee and long may it last xx
Oh I intend to!!!birdlife wrote:
Go get 'em girl...
Love your new signature Yippee and long may it last xx
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.
Re: May be getting somewhere at last :)
Well done Helen! That's epic!!
Pain started Aug 2008 after prolonged sitting.
Referal to Dr Natasha Curran Nov 2008.
First Nerve Block Jan 2009.
Second Nerve Block Feb 2009.
Physiotherapy Feb 2009.
Started practicing sitting four times a day with the amount being increased by 10% each week:-
Feb 2009: 5 seconds x 4
Nov 2009: 1 minute x 4
Dec 2010: 1 hour x 4
July 2011: 3 hours x 4 (cured)
Had relapse in March 2012.
Sitting normally again October 2013. No pudendal pain, but some lingering muscle tightness.
Referal to Dr Natasha Curran Nov 2008.
First Nerve Block Jan 2009.
Second Nerve Block Feb 2009.
Physiotherapy Feb 2009.
Started practicing sitting four times a day with the amount being increased by 10% each week:-
Feb 2009: 5 seconds x 4
Nov 2009: 1 minute x 4
Dec 2010: 1 hour x 4
July 2011: 3 hours x 4 (cured)
Had relapse in March 2012.
Sitting normally again October 2013. No pudendal pain, but some lingering muscle tightness.