Too many years in constant pain......

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donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Too many years in constant pain......

Post by donstore »

JAT.
Not much to add to the excellent advice above except to agree on the efficacy of Lyrica, It has really helped me a lot. Also, be sure to order an IC cushion from IC Network. I use the IC cushion as well as the Airgo cushion depending on the surface. If you can get a desk that elevates so you can stand while you transcribe, that would be quite helpful. I am an x-ray tech and the radiologists at my hospital both have these desks. You could make a case that you have a work related disability and that one of these desks would be a reasonable accomodation for that disability.

Best Wishes,

Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
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Violet M
Posts: 6713
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Too many years in constant pain......

Post by Violet M »

Hi JAT,

You sound amazingly sane to me for all you've been through but as you may have read in some of the other posts, people like us frequently are told to see a psychiatrist so you're not alone there.

If there's any way you could get to New York to have the 3T MRI from Hollis Potter, I think there are a lot of patients on this forum who would recommend that be one of your first steps. It sounds like you have a lot of different things going on but Dr. Potter might be able to help you zero in on the major issues and help you determine if you have pudendal nerve entrapment.

Not sure of the cause of your nausea and vomiting -- sometimes it can be caused by pain or it could also be a side effect of your medications. Or as Calluna said, diverticulitis could be a problem. Some people get relief from medical marijuana but I don't know if it's legal in your state.

Sending you some cyber hugs,

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: Too many years in constant pain......

Post by helenlegs 11 »

Hi Jat,
Glad you have found us.You already know that you are in good company and will get such good advice here. So good that I have nothing to add :) except good luck with your physio. Hope your other medical appointments go well and take care.
Hellen
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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