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Alan wrote: Next week I see an interventional anesthesiologist(pain management)
Alan,
We seem to be on the same schedule. I am seeing such a doctor next week to discuss a possible series of pudendal nerve blocks. I've been resisting interventionist pain modalities for ten months (since my PN diagnosis) but am getting worse rather than better and so am now ready to take the plunge. Let's keep in touch!
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
II am also getting worse. I teach elementary school, and was doing better while on vacation, but teaching is tearing me apart. I am up, then down, then working in small groups, and so on and so on. The only thing keeping me going is my wife and little boy. What is weird though, is that I can now sit most of the day, but the pain travels from my tail bone to my private area and back. Have you ever had problems after a bowel movement. I woke up fine today, but after going to the restroom I was in terrible pain-hitting pain level between 8-10. I took a vicadin and a tramadol. My pain has dropped back down. Every day is like being on a rollar coaster-I can feel good, hurt, good, hurt....I will turn 50 next summer and am looking forward to it, as if I can make it to 55 then I can put in for a retirement. I do not want to go on disability. I can be stubborn, but we will see....Stay in touch and let me know what happens to you. I am flying to NY to see Potter in January. But, am willng to have an implant in me as long as I can do what I use to do, otherwise I don't see the point...guess I will just keeping the meds. Most of my family lives to be in their 80s to 90s, so hate to have to live with this for 30 to 40 more years. Hang in there.
The good thing here is that narcotics are helping your pain. It's not so bad to have to take a Vicodin, even if it's several times a day.
Narcotics aren't touching my pain. Off to Hibner tomorrow.
cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
The good thing here is that narcotics are helping your pain. It's not so bad to have to take a Vicodin, even if it's several times a day.
Narcotics aren't touching my pain. Off to Hibner tomorrow.
cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Very best wishes for your trip to Dr Hibner. I will be thinking about you and looking for your report when you get back.
Jeanie
Diagnosed with left side PN by Dr Renney, March 2010, after over 2 years of searching for help
Left TG Surgery, Dr Ansell, August 2010, failed to relieve pain
Good luck with Dr. Hibner. Please let us know what you find out. I am hearing mixed views about H. Potter in New York. I hear that she is good, but someone mentioned that Dr. Hibner doesn't always take a lot of stock in the MRIs. I can't remember who said that, but it was someone who had met with him a short time ago. I have an appointment with her in January, then Dr. Hibner in February. Seems like we are following you.
Alan,
I can't speak for Dr. Hibner but I'm guessing that some of his mixed feelings about the MRI is that his local radiologist Dr. Kalinkin is not finding as much pathology as Dr. Potter.Faith is the one who posted about Dr. Hibner's comments. As Doreen posted, they are trying to get the rights to use Dr. Potter's software program. When I had my exam, she was right in the control booth and they took another pass at an area that she found problematic. As far as I can tell, she is the innovator and pioneer in imaging pudendal nerve pathology and well worth the $2750 that I paid out of pocket due to my Healthnet HMO, the only option available through my employer. I feel fortunate that I was able to afford it.
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
Thanks for the information Don-it's good to know that Potter found the problem area with you. Don't you have an upcoming appointment with Dr. Hibner soon? I'm anxious to hear what he has to say, about treatments for you.
Alan,
I won't be seeing him until Feb. 2012. I will be having my bilateral scrotal varices (as noted in Dr.Potter's MRI) embolized at UCSF on Oct. 14. Don't think it will affect the sitting pain (that's very likely from the scarring at the rt STL) but maybe it'll cut into the scrotal pain.
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
Went to an interventional anesthesiologist yesterday. I asked him about the 3T MRI in New York. He said he had never heard of it. He was very sincere and had even browsed through a Pudendal forum to see what symptoms people were describing for themselves. Unfortunately my symptoms don't quite match up to the pudendal nerve entirely. Initially, I could not sit for about 6-8 weeks. Now, I can sit most of the day. He told me that he doesn't 'think' that I have a pudendal nerve issue, but agrees that I have in fact injured nerves. Which ones-are extremely difficult to tell. He has suggested that I do another 'caudal block' as it did help me last time for a short while. If I have inflamation of tissue, this should help reduce it and thus allow nerves to heal. Although he doesn't think that I have the 'pudendal nerve' problem he has told me that they can give me a nerve block. I can tell that i am slowly healing, as I can do much more than I could six months ago-but I have to look at small improvements by months, and not days. Anyway, am not sure what nerves are hurt-very confusing.