I am new to the forum and I hope I am telling my story in the right area.
I was diagnosed with coccydynia in 2000, had tailbone removed in 2002. This surgery made my pain worse and I cannot sit in any capacity. My pain is sharp stabbing pain that comes on within minutes and lasts approx 30minutes. I have tried more cushions than I can count. I had to stop wring. I was a manager of a rehab company so I sat all day. In 2008 I was diagnosed with pne and told to learn to live with it. I had a pudendal nerve block to help confirm diagnosis . I have ask tried many treatments and met with many doctors in the past 11 years. My life has been a nightmare for the past 11 years. Not only can I no sit, I can only stand for 20-30 minutes and walk around my home . I can not drive go to restaurants, theatre etc.
I just purchased an iPad so I could find support. I feel very isolated. In order to use my iPad I lay sideways on the couch with a small table I front with a stand for my iPad. I type with one finger because I am leaning on my right arm .
Does anyone have similar problems and would like to talk.
Gail Daoust Canada
New to forum
Re: New to forum
Hi Gail,
Love the name you chose.
Are you from way up North?
Is your pain primarily in the coccyx/tailbone area now or do you have genital pain also? We had a gal with severe coccyx area pain awhile back and she had good success with a ganglion impar block. Eventually she had a more permanent procedure and last we heard she was doing very well.
I think it's sad you've been told you have to live with the pain. There are a number of Canadian patients who have traveled to the US for diagnostic imaging from Dr. Potter in NYC. They will probably be able to give you some info on that.
Take care,
Violet
Love the name you chose.
Are you from way up North? Is your pain primarily in the coccyx/tailbone area now or do you have genital pain also? We had a gal with severe coccyx area pain awhile back and she had good success with a ganglion impar block. Eventually she had a more permanent procedure and last we heard she was doing very well.
I think it's sad you've been told you have to live with the pain. There are a number of Canadian patients who have traveled to the US for diagnostic imaging from Dr. Potter in NYC. They will probably be able to give you some info on that.
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.
Re: New to forum
Hi violet,
I picked the polar bear because I am from Canada. Thanks for the suggestion of the block I will research this, and Dr. Potters name.
My pain is mainly in the coccyx however when I am having a nerve attack, I feel numbness and tingling in the genital region.
Thanks for your suggestions, it is greatly appreciated.
Gail
I picked the polar bear because I am from Canada. Thanks for the suggestion of the block I will research this, and Dr. Potters name.
My pain is mainly in the coccyx however when I am having a nerve attack, I feel numbness and tingling in the genital region.
Thanks for your suggestions, it is greatly appreciated.
Gail
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: New to forum
Hi Gail,
Welcome, glad you have found Hope as the numbness and tingling you describe in your second post do sound PN related.I guess the PN block you got confirmed the diagnosis? There is no need to simply have to live with it as there are a number of physio's and other clinicians who can help. Take a look at the home pages. Violets suggestion of imaging from Hollis Potter in New York is where a lot of people end up going as she seems to provide excellent imaging and has taken on an interest in pudendal nerve pathology and can often identify WHERE any entrapment/irritation may be.
Good luck, hopefully other Canadian's can give you more help although there is a list of Doctors, again on the home pages.
Take care
Welcome, glad you have found Hope as the numbness and tingling you describe in your second post do sound PN related.I guess the PN block you got confirmed the diagnosis? There is no need to simply have to live with it as there are a number of physio's and other clinicians who can help. Take a look at the home pages. Violets suggestion of imaging from Hollis Potter in New York is where a lot of people end up going as she seems to provide excellent imaging and has taken on an interest in pudendal nerve pathology and can often identify WHERE any entrapment/irritation may be.
Good luck, hopefully other Canadian's can give you more help although there is a list of Doctors, again on the home pages.
Take care
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.
Re: New to forum
Hi Helen,
Thanks for the suggestions, I will check out the home page . I will also research Dr Potter in NY. I live in Ontario and are about 8 hours away from NY by car. I have to lay in the back seat because I can not sit. NY is better than trying to travel to Texas to see Dr Renney.
Take care,
Gail
Thanks for the suggestions, I will check out the home page . I will also research Dr Potter in NY. I live in Ontario and are about 8 hours away from NY by car. I have to lay in the back seat because I can not sit. NY is better than trying to travel to Texas to see Dr Renney.
Take care,
Gail