Atypical Trigeminal Neuralgia

Hysterectomy, Ovary Removal, SIJD, Piriformis Syndrome etc
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Atypical Trigeminal Neuralgia

Post by helenlegs 11 »

Was reading down your last post (no mournful trumpet sounds tho' ;)) thinking, what about shingles? Glad that has been ruled out as it can hang around for a good while and you have been through such a lot to get low enough to let that be an issue ( I know that is how my Dad got shingles), but I'm also glad that your medical 'team' seem to be pushing beyond the norm and investigating more unusual problems. Well you wouldn't want to be ordinary now Calluna would you ;) mundane medical problems? NO WAY!! :lol:
Phew! about it (very probably) not being long term, very pleased to hear that.
With Anne's Mum's story in mind, I have heard 'there is nothing much that can be done for PN' and you just' have to live with it,' which seems especially true of actual pelvic nerve entrapment, too many times recently. Although obviously it depends which medic ( where they are located and how clued up they are, even ones who should know!) but it does get VERY wearing not taking no for an answer. However, I don't think it's in my DNA ;)
I do hope that things calm down appreciably Calluna and you have a lovely Christmas.
Helen 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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nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: Atypical Trigeminal Neuralgia

Post by nyt »

Calluna, is there a possibility you have shingles?
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Atypical Trigeminal Neuralgia

Post by Karyn »

nyt wrote:Calluna, is there a possibility you have shingles?
Apparently, that's been ruled out, but it sure does sound like it to me, too.
calluna wrote:I am told it is definitely not shingles, nor is it cellulitis or erysipelas. If anyone has any ideas what on earth it might be.....?
Calluna - I'm glad the redness is receding. Is the rash extending to your scalp and/or neck, too?
Has anyone prescribed a topical cream for you?
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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calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Atypical Trigeminal Neuralgia

Post by calluna »

Definitely not shingles. I've had shingles before, on my back, and it was not like this.

Today it seems to have all become focussed on my left eye which is still nearly swollen shut, that area still bright red and very swollen. The rest of the rash - yes, it is across the scalp too on the sides of the head - it has faded completely during today. Still bumpy but not red any more. The skin is not broken anywhere, no blisters. My face is still very puffy, worse on the left.

I have only had 24 hours of antibiotics so far. Hopefully this time tomorrow it will be taking effect.

Edited to add: aaargh have just realised that the vision in my left eye is affected, very blurry and cloudy. Back to the doc tomorrow I do believe. Am taking no chances with my sight.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Atypical Trigeminal Neuralgia

Post by Karyn »

Please let us know how your appointment goes, Calluna!
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
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Atypical Trigeminal Neuralgia

Post by helenlegs 11 »

Yes Calluna please let us know what they say.
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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Anne smith
Posts: 72
Joined: Wed Feb 08, 2012 12:44 pm

Re: Atypical Trigeminal Neuralgia

Post by Anne smith »

Hi calluna
Iposted back a few days ago saying after giving it thought, your profile of pain is not like my mothers! Have you googled fibromyalgia ! Like temporal artharitas it is another problem Whitch you can actually see visual results of your suffering( Whitch I'm sorry but any thing Whitch manifests visually has got to be delt with! I wish you well ,and real very hopefully for you !!for any thing our medics can actually see! Puts you in a very good position!
Anne smith
Iliostomys at twenty five, just after delivery of baby
Started with rectal pain about twenty one years later
Ten years to get diagnosis, had to research myself!
Two horrific surjurys two(mend) a perennial hernia
Now with mr baranofskis team and traveling to London shortly for injections into alcocks.
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Violet M
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Location: United States
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Re: Atypical Trigeminal Neuralgia

Post by Violet M »

Thinking about you Calluna and hope you are OK. Any progress with the anti-b?

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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