Good morning, my name is Robin and I am a new member here seeking direction. Current symptoms include unable to sit without pain, pain around the anus and inside the wall of my butt cheeck. I had a hip replacement(resurfacing) with a Dr Gross in Columbia SC one year ago. Normal recovery except at month 4 or 5 began to have butt pain, started slowly but in a month was really bad. So went to surgeon who told me to get back checked, did that... normal lumber MRI for a 62 year old man. Tried swimming all summer then formal PT all fall and this pain just keep getting worse and worse. Finally I got a cortisone guided shot into the ishial tuberosity that helped for 4 days total relief, some relieve for another week, then it came back with a vengeance. The pain is worse than its ever been and I am really struggling to cope with this. I have had this pain maybe 8 months now and am floored to read about all you folks suffering from this for years and years. OMG......I cant imagine!!!
I cant find a doctor here in Charlotte who can help. The spine guy who sent me for the mri is asking around for someone to do a nerve block for me. My hip surgeon who trained at Hopkins suggested seeing Dr Dellon. So I called and he is in Nevada all winter and there is no way I can make that 5hr flight. Just the drive to the airport would be a challenge. So I got the first available when he returns to Towson April 2.
So will have to drive to Towson.....hopefully my wife or daughter can drive me, no way to sit on plane. I will lay in the back of my big yukon vehicle. I really dont know what to do waiting on this appointment. Does anyone know a doctor or pelvic PT person here in the Charlotte area that deals with these issues. I read the symptoms of pudental pain and I seem to have most of them, including be able to sit fine on a toilet of all things.
New member, no doctors in Charlotte?
Re: New member, no doctors in Charlotte?
Welcome to the forum, Frigator,
Your symptoms do sound like pn. Yes, most of us live in places where there are no specialists. Dr. Conway (a pn surgeon) is also on the east coast, but he's in New Hampshire, so it's a plane ride away from you. Pain doctors can do nerve blocks but it is helpful to find one who is knowledgeable about pn, so the block can function as a diagnostic tool (s/he needs to send the numbing agent to the pudendal nerve). You could also try to find a physical therapist who is knowledgeable about pn. They can often help with the diagnosis. You could ask your spine and hip surgeons if they have any pt or pain doctor suggestions. You can also look at the home page on this site to see if there are doctors or pts near you.
April
Your symptoms do sound like pn. Yes, most of us live in places where there are no specialists. Dr. Conway (a pn surgeon) is also on the east coast, but he's in New Hampshire, so it's a plane ride away from you. Pain doctors can do nerve blocks but it is helpful to find one who is knowledgeable about pn, so the block can function as a diagnostic tool (s/he needs to send the numbing agent to the pudendal nerve). You could also try to find a physical therapist who is knowledgeable about pn. They can often help with the diagnosis. You could ask your spine and hip surgeons if they have any pt or pain doctor suggestions. You can also look at the home page on this site to see if there are doctors or pts near you.
April
Re: New member, no doctors in Charlotte?
Thank you for your suggestions April. My surgeon has already recommended Dr Dellon and I do have an appointment with him on April 2. Yesterday awoke with so much pain went to my primary care doctor for suggestions and he is referring me to a local pain doctor who does the injections and blocks. I dont think they are experienced with pn though. Looking online there are a couple PTs who supposedly are "pelvic floor" specialist but I really don't want any PT right now as I recently completed 6 weeks of PT which made my symptoms way worse. Seems everything I do makes it worse. If I could just get it back to where it was 6 months ago would be a blessing.
I already see another pain doctor for my meds: opiods and lyrica. I have suffered from peripheral neuropathy and rheumatoid arthritis for years so this new PN pain is on top of my other pain and I am about to die from this pain. Last night was our annual go out to eat dinner on Christmas eve where I tried to sit a little with my family but ended up standing and eating. I brought my special doughnut cushion and loaded up on medicine but still couldn't sit 5 minutes.
I am continuing to read this board which is a wealth of info and also so many stories of people suffering for years. It breaks your heart to read some of these stories.
I also am kicking myself cause I should have known this hip surgery could hurt my nerves with the traction they use. I would have much rather just suffered from the arthritis pain than this PN pain. My pain doctor had to cut my meds in half this summer cause of new DEA rules on pain medicine. So I am on half my normal meds trying to deal with this pain. The ice is my best friend now. I just freeze it...only thing that really helps.
I already see another pain doctor for my meds: opiods and lyrica. I have suffered from peripheral neuropathy and rheumatoid arthritis for years so this new PN pain is on top of my other pain and I am about to die from this pain. Last night was our annual go out to eat dinner on Christmas eve where I tried to sit a little with my family but ended up standing and eating. I brought my special doughnut cushion and loaded up on medicine but still couldn't sit 5 minutes.
I am continuing to read this board which is a wealth of info and also so many stories of people suffering for years. It breaks your heart to read some of these stories.
I also am kicking myself cause I should have known this hip surgery could hurt my nerves with the traction they use. I would have much rather just suffered from the arthritis pain than this PN pain. My pain doctor had to cut my meds in half this summer cause of new DEA rules on pain medicine. So I am on half my normal meds trying to deal with this pain. The ice is my best friend now. I just freeze it...only thing that really helps.
Re: New member, no doctors in Charlotte?
Hi Robin,
The PTs who treat pelvic floor pain usually do physiotherapy, which doesn't involve you moving around. It involves them finding trigger points and trying to loosen the muscles around the nerve. If they are experienced, they can help with diagnosis, so if you do learn about an experienced one, I would give it a try. You can make clear that you don't want the nerve itself touched.
Yes, without ice, I would not have survived this problem. I've worked full-time through this all and was on (before my recent surgery) a fairly low level of medication. I wrote up a longish entry on here about my icing strategy, so you may want to search for that if you want some tips on icing. I think the subject is something like "my icing strategy" and it's in the Case Updates section. In a nutshell, I put water in condoms, tie them, freeze them, wrap them in a wet paper towel, and place them on a pad in my underwear. It numbs the area and allows me to function normally. When it melts, I refreeze the old one and put in a new one. I also explain how I do this when I travel, so it might help you with a flight. And if you can manage to fly, I would consider all the surgeons who treat men (not just Dellon). I think Conway also treats men, but I don't think Hibner does. But I would call their offices to make sure.
April
The PTs who treat pelvic floor pain usually do physiotherapy, which doesn't involve you moving around. It involves them finding trigger points and trying to loosen the muscles around the nerve. If they are experienced, they can help with diagnosis, so if you do learn about an experienced one, I would give it a try. You can make clear that you don't want the nerve itself touched.
Yes, without ice, I would not have survived this problem. I've worked full-time through this all and was on (before my recent surgery) a fairly low level of medication. I wrote up a longish entry on here about my icing strategy, so you may want to search for that if you want some tips on icing. I think the subject is something like "my icing strategy" and it's in the Case Updates section. In a nutshell, I put water in condoms, tie them, freeze them, wrap them in a wet paper towel, and place them on a pad in my underwear. It numbs the area and allows me to function normally. When it melts, I refreeze the old one and put in a new one. I also explain how I do this when I travel, so it might help you with a flight. And if you can manage to fly, I would consider all the surgeons who treat men (not just Dellon). I think Conway also treats men, but I don't think Hibner does. But I would call their offices to make sure.
April
Re: New member, no doctors in Charlotte?
Thanks for that info April. I will speak to my current pain doctor about a good pelvic floor PT...she is a woman who told me she also went through a period of pn so hopefully she knows someone. I didn't think of them helping with the diagnosis but sounds good.
And I already read your icing protocol April which is brilliant...frozen condoms, how original. I myself am an experienced "icer" having had a previous peroneal nerve entrapment in my leg at the knee and foot. For two years I carried an ice chest around with me everywhere I went. No one here could figure our what was wrong with me until they did the nerve conduction test and discovered I had peripheral neuropathy and my nerve was entrapped.
I was referred to Dellon back in 2014 by a retired orthopedic surgeon professor from the UF med school who goes to our church. Dellon invented a new testing device for peripheral neuropathy so you don't have to endure those painful conduction tests. So he did the surgery on my leg which was a total success. Dr Dellon does a lot of other nerve surgeries and is a full professor at John Hopkins medical school so he knew my friend from church. It took a year for the nerve to heal as it was flattened according to Dellon. At first I didnt think the surgery worked but slowly it got better. Now I look down at that scar and think of all the pain I endured there. Dellon told me the ice is not good for the nerve so I tried to limit it after the surgery.
I know Dellon has a terrible bedside manner but he fixed me once so I am going to stick with him again at least for the initial appointment with the blocks. Also I can drive to him. I will do the initial appointment with the blocks and see what he says and then decide whether to do the surgery or wait. I am just wondering if I should have this interventional radiologist they are sending me to do the blocks......or just wait till I see Dellon. I just dont want them to screw it up any worse than it already is. I have read that some people get better just from having the blocks....is that true?
And I already read your icing protocol April which is brilliant...frozen condoms, how original. I myself am an experienced "icer" having had a previous peroneal nerve entrapment in my leg at the knee and foot. For two years I carried an ice chest around with me everywhere I went. No one here could figure our what was wrong with me until they did the nerve conduction test and discovered I had peripheral neuropathy and my nerve was entrapped.
I was referred to Dellon back in 2014 by a retired orthopedic surgeon professor from the UF med school who goes to our church. Dellon invented a new testing device for peripheral neuropathy so you don't have to endure those painful conduction tests. So he did the surgery on my leg which was a total success. Dr Dellon does a lot of other nerve surgeries and is a full professor at John Hopkins medical school so he knew my friend from church. It took a year for the nerve to heal as it was flattened according to Dellon. At first I didnt think the surgery worked but slowly it got better. Now I look down at that scar and think of all the pain I endured there. Dellon told me the ice is not good for the nerve so I tried to limit it after the surgery.
I know Dellon has a terrible bedside manner but he fixed me once so I am going to stick with him again at least for the initial appointment with the blocks. Also I can drive to him. I will do the initial appointment with the blocks and see what he says and then decide whether to do the surgery or wait. I am just wondering if I should have this interventional radiologist they are sending me to do the blocks......or just wait till I see Dellon. I just dont want them to screw it up any worse than it already is. I have read that some people get better just from having the blocks....is that true?
Re: New member, no doctors in Charlotte?
Hi Robin,
Oh, yes, that all makes a lot of sense. It's so good to hear that he successfully treated your knee nerve issue. I have read (I think in an online book that Dellon himself wrote) that a nerve block alone can treat pn long-term, but I don't remember anyone on the forum reporting that, though I'm sure the forum underrepresents the successfully treated pn patients. I did hear from Hibner (back in 2016) that he gives blocks 2-3 times a year to one of his patients, because the steroid gives her several months of relief. So, I do think a small percentage of patients get extended relief from the steroid. So, you may want to try it as a treatment, but because it also often creates a flare (both of mine gave me a flare), you'll probably want to be sure that it can also be used diagnostically. So, if the local person is using images to direct the block and can get it to the pudendal nerve (and, of course, is including a numbing agent with the steroid), then it may make sense to do right away (rather than waiting until you can see Dellon).
So you are also a big icer! I too drag coolers around with me. I am trying not to ice as much these days, though, since I'm trying to heal the nerve after surgery and ice reduces blood flow (as Dellon advised you).
April
Oh, yes, that all makes a lot of sense. It's so good to hear that he successfully treated your knee nerve issue. I have read (I think in an online book that Dellon himself wrote) that a nerve block alone can treat pn long-term, but I don't remember anyone on the forum reporting that, though I'm sure the forum underrepresents the successfully treated pn patients. I did hear from Hibner (back in 2016) that he gives blocks 2-3 times a year to one of his patients, because the steroid gives her several months of relief. So, I do think a small percentage of patients get extended relief from the steroid. So, you may want to try it as a treatment, but because it also often creates a flare (both of mine gave me a flare), you'll probably want to be sure that it can also be used diagnostically. So, if the local person is using images to direct the block and can get it to the pudendal nerve (and, of course, is including a numbing agent with the steroid), then it may make sense to do right away (rather than waiting until you can see Dellon).
So you are also a big icer! I too drag coolers around with me. I am trying not to ice as much these days, though, since I'm trying to heal the nerve after surgery and ice reduces blood flow (as Dellon advised you).
April
Re: New member, no doctors in Charlotte?
Yes April my freezer is full of all kinds of ice packs. I will try the condom also. Currently for this possible pn I am using small blue 3x5in ice packs that I got from amazon...cheap to buy a dozen. And I use to wrap them with a piece of diaper material and stick them in the crack of my butt so it contacts the wall of my butt cheek which seems to be where most of the pain is. But now I have switched to a paper towel after reading your method which works fine and saves me the trouble of washing those diaper material wraps. I usually fall asleep with two ice packs on me, the small one for my pn pain and my new hip aches some so a bigger ice pack for that.
So I have the appointment with the interventional radiologist this morning. I think they just examine me today and then schedule any procedures at a later date. And I will ask them how experienced they are with pn nerve blocks...have they done it before? Maybe they could give me one today?? Thats the only thing on the Nantes criteria that I need. It would be nice to know what my diagnosis is as I have been told so many things since last spring when it started.
That steroid shot they gave me to the ischial tuberosity helped for a few days really well, some for a week, then it flared back up worse than ever. Seems the pain was worse after the nerve experienced the cortisone....so am hesitant to try more. Is that common, for the nerve to flare after a steroid treatment?
So I have the appointment with the interventional radiologist this morning. I think they just examine me today and then schedule any procedures at a later date. And I will ask them how experienced they are with pn nerve blocks...have they done it before? Maybe they could give me one today?? Thats the only thing on the Nantes criteria that I need. It would be nice to know what my diagnosis is as I have been told so many things since last spring when it started.
That steroid shot they gave me to the ischial tuberosity helped for a few days really well, some for a week, then it flared back up worse than ever. Seems the pain was worse after the nerve experienced the cortisone....so am hesitant to try more. Is that common, for the nerve to flare after a steroid treatment?
Re: New member, no doctors in Charlotte?
Just returned from my appointment with Dr B. who is an interventional radiologist. He has never done a pn nerve block and does not know of anyone in Charlotte who does them. He thinks the urologists might do them and promised to ask around to try and find someone who does them. Hard to believe no one in Charlotte does them. He offered to research it out and make me his first pn nerve block but I declined. Its sinking in how rare treating doctors are for this condition.
Re: New member, no doctors in Charlotte?
Hi Robin,
That's too bad that the doctor didn't know how to do them. You could call the UNC medical school in Chapel Hill. You could also google around on their site to see if they have pelvic health department, pain clinic, and/or interventional radiologists. My local care (pain doctor, pt, urogynecologist) are at a university clinic in the neighboring city. They all know about and treat pn patients, so it's possible that a university-connected clinic would have knowledgeable staff. They may even know if there was someone in Charlotte who could do the block.
I think it is common to get a flare from the steroid. That is definitely the most common outcome I hear about on here. So you had several days of reduced pain. I wonder if that was the numbing agent. I had a reduction in pain for several hours (in one case) and for almost a day (in another case) from the numbing agent, and then my pain seemed higher than it had been. It was hard to document flares because my pain fluctuated all the time back then, so I usually wasn't sure if there was a trigger or if it was just a regular fluctuation. But, my sense in both cases was that there was an uptick in pain after the blocks.
I thought I was the only one who had a freezer full of icing devices! And I too go to sleep with the ice (though now with stronger meds I can sometimes do it without). It's impossible to sleep with that burning pain.
April
That's too bad that the doctor didn't know how to do them. You could call the UNC medical school in Chapel Hill. You could also google around on their site to see if they have pelvic health department, pain clinic, and/or interventional radiologists. My local care (pain doctor, pt, urogynecologist) are at a university clinic in the neighboring city. They all know about and treat pn patients, so it's possible that a university-connected clinic would have knowledgeable staff. They may even know if there was someone in Charlotte who could do the block.
I think it is common to get a flare from the steroid. That is definitely the most common outcome I hear about on here. So you had several days of reduced pain. I wonder if that was the numbing agent. I had a reduction in pain for several hours (in one case) and for almost a day (in another case) from the numbing agent, and then my pain seemed higher than it had been. It was hard to document flares because my pain fluctuated all the time back then, so I usually wasn't sure if there was a trigger or if it was just a regular fluctuation. But, my sense in both cases was that there was an uptick in pain after the blocks.
I thought I was the only one who had a freezer full of icing devices! And I too go to sleep with the ice (though now with stronger meds I can sometimes do it without). It's impossible to sleep with that burning pain.
April
Re: New member, no doctors in Charlotte?
Good idea April to check with a university department....they got one in Winston Salem which is closer than Chapel Hill....they got a med school there and Baptist Hospital. I had one of their professors treat me one time so I am in their system. So will go to their website and see what they got. At least I got that appointment with dellon April 2 but would like to have a diagnosis before then. Will try to enjoy today.....its really last big day of college football till next year. My poor recliner sits there unused and I have taken over the coach as my new position.