New PNE in AZ

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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: New PNE in AZ

Post by helenlegs 11 »

Would you be able to kneel at all? I know this would look very unconventional but it has helped me.
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.
biff0101
Posts: 76
Joined: Sun Apr 15, 2012 12:24 am

Re: New PNE in AZ

Post by biff0101 »

Kneeling is a no go for me, I have tried it. So I stand for 30 minutes and sit for 5. Have to make it work to keep my paycheck. Speaking of paycheck, does any body no the mechanism for starting to apply for disability In the US?

thanks
Jim
biff0101
Posts: 76
Joined: Sun Apr 15, 2012 12:24 am

Re: New PNE in AZ

Post by biff0101 »

Update, I am still seeing Dr. Hibner on 3 May for my first consult, thank goodness. I think I am at a tipping point with my legs. My left heel has been numb since last night and my hip joints seem to be getting a bit more sore and my legs in general just feel a bit weaker. Is the beginning of my skeletal problems with my legs and is is PT in my future. Also the shooting pain continues in my inner thigh as usual and a bonus my jaw about locked up this morning even though I have been wearing my mouth guards. Gotta love the misery! Any thoughts on the leg issues?
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Violet M
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Re: New PNE in AZ

Post by Violet M »

My thoughts on the leg/foot issues are that it's typical to have them with PNE -- not necessarily due to PNE but because there are often other problems that accompany PNE such as piriformis syndrome, etc.

Good luck with your appointment tomorrow!

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.
biff0101
Posts: 76
Joined: Sun Apr 15, 2012 12:24 am

Re: New PNE in AZ

Post by biff0101 »

Ok I am back from my consult with in Phoenix. I met with Dr. Castenello he was very nice and listened to every thing I had to say about my symptoms and misery. I was there for nearly 2 hours and he determined that due to my groin issues (seems like chaffing, sweating and general rubbing), skin sensitivity and hip pain that he thinks that one of 2 nerves are the culprit. It is either the Obturator or Genitofemoral in his opinion and the pudendal has a very low percentage of causing my issues. I have no rectal pain, penis pain or other issues. I am going back to St. Joseph's some time soon for a specific pelvic MRI (looking at the nerves specifically) and nerve blocks on the previously mentioned nerves to see if they are the problem. He also prescribed Lyrica for me as I will slowly be coming off of the Gabapentin. I survived the drive today but I will probably pay for it later. I guees we will go from there and see what happens. I will be enthralled if it is not the pudendal but hopefully this will be resolved soon. Give me your thoughts. Also the PT at Hibner's office will be stting me up with a pelvic floor specialist here in Tucson.

thanks
Jim
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: New PNE in AZ

Post by nyt »

When I first read your description the first thing that came to my head was obturator and not pudendal. However, some individuals with pudendal end up with obturator because of the spasming of the pelvic floor around the obturator nerve. Finding a good PT should hopefully give you some relief and the nerve blocks should help with the diagnosis. Hopefully, the MRI will also shed some light on the matter whether it is a nerve entrapment they find or some other pathology. Just don't be discouraged if the MRI is normal, that doesn't mean that you don't have an entrapment of one or both of the nerves Dr. C. suggested.

Good luck with everything and keep us posted.
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
biff0101
Posts: 76
Joined: Sun Apr 15, 2012 12:24 am

Re: New PNE in AZ

Post by biff0101 »

Thanks NYT, I will getting more information on the PT issue next week. Also Dr. C said that I need to be seeing a neurologist here in Tucson just get a 2nd look at the issue. The good news is that TRICARE approved the visit to the 2nd neuro doc so I will have two routes of attack on this issue. The next issue is to see if TRICARE will approve the nerve blocks and MRI that will be done at St. Josephs. I will post when I get more news.

thanks
Jim
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Violet M
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Re: New PNE in AZ

Post by Violet M »

Hi Jim,

It sounds like it was worth the trip up to Phoenix and hopefully in the end it will not be the pudendal but something that is more easily dealt with. At least now you have a bit of a plan in place with some docs who have some experience in this area and it's good news that your insurance company is being supportive to some extent.

If you find a good PT who is trained in treating pelvic nerve entrapments (and PNE specifically) maybe you could ask if they would like their name added to our site. I hope PT goes well for you. ;)

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.
biff0101
Posts: 76
Joined: Sun Apr 15, 2012 12:24 am

Re: New PNE in AZ

Post by biff0101 »

Violet, yes it would seem it was worth the trip and wait so see Dr. C. I am just glad I have some indicators on what my problem could be and that I can move forward on this thing. Guided nerve blocks and the MRI are next in the queue. I just want to be able to go golfing again..lol. WIll update when more info rolls in.

Jim
biff0101
Posts: 76
Joined: Sun Apr 15, 2012 12:24 am

Re: New PNE in AZ

Post by biff0101 »

Also, if I do get a legit PT here in Tucson, I will add their name to the list.
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