Hoping for a life without pain

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Patty
Posts: 158
Joined: Sun Feb 16, 2014 2:14 pm

Re: Hoping for a life without pain

Post by Patty »

Evil dog I'm in the same boat. Hoping for life without pain but 2 1/2 years and no relief. I too have had minimal luck with Lyrica and Cymbalta and due to cost stopped taking them. Gabapentin dies nothing also. Your not alone trust me.
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: Hoping for a life without pain

Post by nyt »

evilpog, if you go to the home page there is a list of doctors that treat patients with PN. You can also go to the International Pelvic Pain Society and look for someone who generalizes in pelvic pain. You could even go to a PT in your area for initial help and they might know a doctor in your area.

http://pelvicpain.org/home.aspx

I wouldn't be surprised if you need to travel out of state for pudendal blocks. They should be done guided which will limit your options.
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
evilpog
Posts: 16
Joined: Tue Jan 13, 2015 7:56 pm

Re: Hoping for a life without pain

Post by evilpog »

Thank you. I've set up an appointment with Dr. Ankur Khosla and Dr. William Yancey at
Gemini Pain & Spine Center in Houston, TX. The nurse was surprised I was travelling out of state
to visit them so guessing they don't get a lot of travelers?
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Violet M
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Re: Hoping for a life without pain

Post by Violet M »

Good luck with your appointment. I don't know much about these doctors so can't really comment but I would be interested to hear how it goes 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.
evilpog
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Joined: Tue Jan 13, 2015 7:56 pm

Re: Hoping for a life without pain

Post by evilpog »

I got nerve injections done on my lower lumbar and tailbone yesterday. Dr. didn't feel comfortable trying to hit the pudendal nerve since it's location varies from person to person. So far no benefit if not somewhat worse. Dr. said give it a week to see if the steroids work.
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Violet M
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Re: Hoping for a life without pain

Post by Violet M »

Good luck. Hope you will be feeling better soon.

I've never heard a doctor avoid giving a pudendal nerve block due to anatomy variations in people. Is this someone who is not very experienced at giving PN blocks?
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.
evilpog
Posts: 16
Joined: Tue Jan 13, 2015 7:56 pm

Re: Hoping for a life without pain

Post by evilpog »

He's a pain specialist so I'm hoping he's experienced. I did see some information at some point from a provider suggesting the nerve's location can vary from person to person and even branch differently. I don't know the truth of it, but it sounded plausible to me considering my experience with meat processing. I'll be following up with him in a week or so to discuss the procedure and outcome along with doing a pudendal nerve block this time. If he can't do it then I'll see if there is another provider in the region. My mother lives in Seattle so I also have the option to visit Attaman or at least I hope. I'll keep this thread up to date as things progress. Thank you for the support and perspectives.
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Violet M
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Re: Hoping for a life without pain

Post by Violet M »

Yes, there is some variation in nerve anatomy but nerve blocks can be done using nerve stimulation if that is a concern (as Dr. Redmond does). I've not heard of the variation being so great that you couldn't have a nerve block using image guidance at the ischial spine or in alcock's canal where the main trunk of the nerve runs. That's not to say there might not be some risk involved (as there would be with any type of block, including a lumbar block). Steroids at the lumbar level have the risk of causing arachnoiditis although it's pretty rare.

I hope you will be feeling better soon.

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.
evilpog
Posts: 16
Joined: Tue Jan 13, 2015 7:56 pm

Re: Hoping for a life without pain

Post by evilpog »

Thought I'd do an update. It's been nearly 3 years and 5 months since my symptoms started. The sacrum nerve blocks in December had no effect other than to shrink my wallet. I'm unfortunately still dealing with constant pain with no end in sight and lost my job several months ago so now I'm without insurance. I'm hoping that when I get another job and regain coverage I can see Dr. Attaman in Seattle since I have family there. At the moment I try to get by with menthol muscle pain relief, Tylenol, Tylenol w/ codine, and tramadol along with a heating mat. Pain levels and sensations vary throughout the day and of the course of weeks with no rhythm or reason to the severity other than sitting to long. Anyhow still hoping to shake this, but can't believe how long this has been going on.
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Violet M
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Re: Hoping for a life without pain

Post by Violet M »

Sorry to hear things haven't improved for you. Three years is a long time. :(

Hopefully Dr. Attaman will be able to help you. He is definitely experienced at dealing with pudendal neuralgia.

Take care,

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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