May be getting somewhere at last :)

Treatment options for UK & Irish members; including VHI & HSE criteria for funding and E112 Applications etc.
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helenlegs 11
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Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

May be getting somewhere at last :)

Post by helenlegs 11 »

I received a 'copied in' letter to my PCT from Dr Greenslade today and I am over the moon.
As many already know I have had the most ridiculous contretemps with almost everybody medical, from my own GP to my county PCT (governing medical body for the NHS)
It has been a fiasco.
However, I may be getting somewhere at last and it will ALL be down to Dr Greenslades input.
In his letter he noted that Bristol have 'problems coping with our surgical load and we are not listing any further patients' for decompression surgery.'The best approach is going to be for her to see Professor Robert in Nantes France'. (under E112 funding) WOW!! :)
He goes on to say, and I think we will all be able to relate to this. . . . .
'My main concern here,is the fact that Mrs H is getting onto a veritable medical merry-go-round. Unfortunately this is something we see happening a lot and it is a mark of how horrible the pain is and how desperate the patients become in their search for relief from the pain .This feature will not be a surprise to your local pain team, because a lot of our patients get into this kind of pattern. In many cases the pattern of doctor shopping, as it is often termed, saps the patients life as much as the actual pain. For this reason I think it is important that we do everything possible to get her through the diagnostics and treatment options that are available so that she can settle down to reconstructing her life.' DOUBLE WOW!! I keep reading it and shaking my head, as I still can't actually believe it.
I await my PCT's response to this. I should hear next week.
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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Laura
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Joined: Sun Jul 17, 2011 9:19 pm
Location: Astoria, Oregon

Re: May be getting somewhere at last :)

Post by Laura »

Finally :D I'm so happy for you! :D everything crossed!!! :D
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calluna
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Joined: Mon Sep 27, 2010 11:57 pm

Re: May be getting somewhere at last :)

Post by calluna »

Helen, that is so good! Lets hope that the PCT come back to you promptly with some positive news, fingers crossed for you.
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janetm2
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Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: May be getting somewhere at last :)

Post by janetm2 »

Helen,
How wonderful for you, I am so glad to hear the good news! I hope they get going as noted in the letter and you are soon in less pain. Thanks for making the plea for the petition. Take Care,
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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helenlegs 11
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Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: May be getting somewhere at last :)

Post by helenlegs 11 »

Oh thank you ladies, you have made my smile even wider :D
H x
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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Karyn
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Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: May be getting somewhere at last :)

Post by Karyn »

OMG, Helen!!! :o :D
I'm so very excited for you!!!! I'm so heartened by Dr. Greenslades letter. Everything he wrote is TRUE - Finally, finally having someone advocate for you. It's about time!
Please let us know how your PCT responds. The suspense is killing me!
Hugs,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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helenlegs 11
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Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: May be getting somewhere at last :)

Post by helenlegs 11 »

Me too Karyn :D
Seems I'm up to 5 pelvic nerves that have been named by doctors now! although I really don't think I have any trouble with the superior gluteal nerve that Dr Filler mentioned (ages ago). That nerve travels up and across (I think) from the piriformis and I have no pain above the muscle at all, so I'm down to 4 (that I think may be involved too, given the areas involved and particular paths of nerve pain)
So when I get my pudendal, sciatic, PFCN and cluneal nerves sorted I'll be fine :)
I'm still not convinced about the cluneal nerve either actually but I think he has mentioned this because my bum is numb, so that may make it the middle and inferior but not the superior cluneal. Will need to look into that one a bit more to be convinced. Obviously I know a LOT more than he does :lol:
No!! The man is now officially my hero.
Dr G did mention that Prof Robert has done decompression surgery on the cluneal nerve too in case anyone has problems with that one.
XOX
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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Karyn
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Location: Lowell, MA

Re: May be getting somewhere at last :)

Post by Karyn »

helenlegs 11 wrote:Dr G did mention that Prof Robert has done decompression surgery on the cluneal nerve too in case anyone has problems with that one.
Yes - I've heard that as well, Helen. Gosh - sounds like you're a lot like me as far as the "multiple neuropathies" go. Almost makes me wish I could go back to my old way of thinking: Pudendal Neuralgia is the root of all evil .... Come to find out .... it's not! I can't tell you how many doctors I've seen since my bilateral PN decompression and they're all like, "but you just had surgery and you're still in pain. The surgery must have been a failure". I try to explain that my PN SYMPTOMS are much better, some completely resolved, but the PN isn't the only nerve that runs through the pelvis. Then I get "the look", followed by a discussion of nerve cross talk, CNS, blah, blah, blah, followed by orders for yet more labs trying to nail that ever elusive auto-immune disease, inflammatory disorder, rhuematological disease, etc .... :?
Yes! Dr. Greenslade has most certainly earned that hero status! Add me to the fan club!!!
Hugs,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Amanda
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Location: Dublin, Ireland
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Contact Amanda

Re: May be getting somewhere at last :)

Post by Amanda »

This is great news Helen, to have Dr G recommend you to to Nantes is great fo ryou as you will be with very qualified doctors for diagnosis and treatment.
Yes I know of several patients who have had cluneal decompression with Robert.
The E112 process is not easy to get through but if you persevere with the application hopefully you will be successful.
Ive had 12 so far and am on no 13, if you want any help filling out the forms etc let me know.
Sorry I didnt get a chance to ring you this morning, an unexpected event meant I had to go out.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
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helenlegs 11
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Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: May be getting somewhere at last :)

Post by helenlegs 11 »

No problem Amanda, I had an extended family crisis tbh.
Thanks for the offer I have no clue about any of it, didn't even think I would get this far. Well I guess I haven't. . . yet! But I hope that the PCT realise their mistake and really try and help me now. I can't really blame them, it's just because my GP has had such a negative, despondent attitude all the way through that has really caused the set backs.
OOOh! there may be a time when I won't have to whinge on (and on) any more :D
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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