Hello Heisenberg,
Since we are almost into next year I think you are right that it makes sense to wait and hope that your new insurance will have better coverage.
I just wanted to respond to your comment about the medication messing with your CNS. Chronic pain can mess with your CNS even if you aren't taking any medication for it. I got to the point where my CNS was so wound up that just hearing the phone ring made me jump. And I wasn't getting much sleep at night and that starts messing with your brain. So, I understand that you don't want to take medications because I don't like taking too many meds either, but I'm not sure how I would have gotten through the worst of PNE without some of the meds. They really helped my quality of life until I got the proper treatment for the underlying cause and then I was able to discontinue all the meds.
I'm not sure what would be causing the leg weakness but that's definitely something to get checked out sooner rather than later. I hope you can find a doctor who can figure it out. I would be interested to hear how your appointment goes.
Violet
My own burning hell....
Re: My own burning hell....
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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Heisenberg
- Posts: 9
- Joined: Sat Dec 09, 2023 7:21 pm
Re: My own burning hell....
Thx.
Having an appt with a spine Dr tomorrow who supposedly has pudendal nerve issue experience to get their take on things. They supposedly take my current insurance anyway.
Will post back eventually.
Having an appt with a spine Dr tomorrow who supposedly has pudendal nerve issue experience to get their take on things. They supposedly take my current insurance anyway.
Will post back eventually.
Re: My own burning hell....
How'd your appointment with the spine doctor go?
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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Heisenberg
- Posts: 9
- Joined: Sat Dec 09, 2023 7:21 pm
Re: My own burning hell....
Saw the spine Dr, we talked some things through. Gave me a routine exam for things like muscle weakness and tested my reflexes. Nothing obvious from any of that.
He is a spine Dr so he wants an MRI of my lower spine so he can see if there is something obvious there. Makes sense to get that but doesn't account for the burning also moving into my arms lately (not as intense as my crotch or legs yet), or what my rash originally was at the start of this. Seems like a decent guy but IMO he is not equipped to tackle the big picture of what is going on with me. Hope I am wrong though.
I can't get the MRI this year and have to wait to be able to get that hopefully sometime in January. Some of that is my insurance changing as of Jan 1st and the need to get preauthorization b4 I am even allowed to schedule the MRI, which by the time they would get that (if at all) with current insurance would be impossible to schedule an MRI for this year anyway as that could take weeks, then the preauthorization will not even be valid since no longer my insurance in 2024. Also due to restrictions of current insurance as to what hospital/outpatient center could even be used we need to wait for new insurance in 2024 to be allowed to get the MRI done where more convenient for me to go to and one of the places the Dr prefers using for the MRI as opposed to what current insurance may allow.
So for now am just hoping to hold out until that happens. And when new insurance starts in 2024 maybe try to get away from current clueless GP who doesn't followup on things we discussed and is very unresponsive about anything, not even returning my messages with things that need his response on.
I still feel it will be impossible to find a Dr to help me the way managed care works here now. These Drs have no time to think/investigate/research/consult/followup on anything and see too many patients. I have to try to get lucky and find some kind of Superdoc (who probably doesn't even exist). Maybe Dr McCoy will beam down from the Starship Enterprise and wave his watchamacallit thing over my body and heal me magically (Star Trek joke), but I've been unable to raise him on my communicator (just like my GP). I think that is about as likely as getting any real help. I continue to try to research things on my own but it's tough.
Thanks for asking.
He is a spine Dr so he wants an MRI of my lower spine so he can see if there is something obvious there. Makes sense to get that but doesn't account for the burning also moving into my arms lately (not as intense as my crotch or legs yet), or what my rash originally was at the start of this. Seems like a decent guy but IMO he is not equipped to tackle the big picture of what is going on with me. Hope I am wrong though.
I can't get the MRI this year and have to wait to be able to get that hopefully sometime in January. Some of that is my insurance changing as of Jan 1st and the need to get preauthorization b4 I am even allowed to schedule the MRI, which by the time they would get that (if at all) with current insurance would be impossible to schedule an MRI for this year anyway as that could take weeks, then the preauthorization will not even be valid since no longer my insurance in 2024. Also due to restrictions of current insurance as to what hospital/outpatient center could even be used we need to wait for new insurance in 2024 to be allowed to get the MRI done where more convenient for me to go to and one of the places the Dr prefers using for the MRI as opposed to what current insurance may allow.
So for now am just hoping to hold out until that happens. And when new insurance starts in 2024 maybe try to get away from current clueless GP who doesn't followup on things we discussed and is very unresponsive about anything, not even returning my messages with things that need his response on.
I still feel it will be impossible to find a Dr to help me the way managed care works here now. These Drs have no time to think/investigate/research/consult/followup on anything and see too many patients. I have to try to get lucky and find some kind of Superdoc (who probably doesn't even exist). Maybe Dr McCoy will beam down from the Starship Enterprise and wave his watchamacallit thing over my body and heal me magically (Star Trek joke), but I've been unable to raise him on my communicator (just like my GP). I think that is about as likely as getting any real help. I continue to try to research things on my own but it's tough.
Thanks for asking.
Re: My own burning hell....
Hi Heisenberg,
That's kind of scary about the burning in your arms too. I'm sure it's frustrating waiting for the MRI and it's hard not to worry. I know what you mean about doctors having their own narrow focus instead of looking at the whole patient. There is a lot of treatment of symptoms without getting to the root of the problem.
At my age, I know that things are going to be mostly downhill from here on out and I'm looking forward to a better land someday. Maybe not Dr. McCoy and Star Trek - haha - but someone who came to this earth as a baby about 2000 years ago and proved he could heal a lot of people and rise from the dead. It's Christmas so I couldn't help but say that. I try to help people find answers on this forum but the reality is, we are all broken and we are all going to die and ultimately we need more than any of the doctors on this earth can offer. I love all of you guys and want you to know I am praying for you.
I hope that you will find some answers that will help you to have a better life in the here and now.
Violet
That's kind of scary about the burning in your arms too. I'm sure it's frustrating waiting for the MRI and it's hard not to worry. I know what you mean about doctors having their own narrow focus instead of looking at the whole patient. There is a lot of treatment of symptoms without getting to the root of the problem.
At my age, I know that things are going to be mostly downhill from here on out and I'm looking forward to a better land someday. Maybe not Dr. McCoy and Star Trek - haha - but someone who came to this earth as a baby about 2000 years ago and proved he could heal a lot of people and rise from the dead. It's Christmas so I couldn't help but say that. I try to help people find answers on this forum but the reality is, we are all broken and we are all going to die and ultimately we need more than any of the doctors on this earth can offer. I love all of you guys and want you to know I am praying for you.
I hope that you will find some answers that will help you to have a better life in the here and now.
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: My own burning hell....
Hello,
You didn't write too much.
There is so much that needs to be covered when dealing with this problem.
I had PNE way back in 2004 and travled to 21 so called specialists in the country by train laying down (first class) because I couldn't sit.
I ended up in Nantes, France with Dr. Robert and underwent transgluteal decompression surgery.
The surgery helped some but not completely.
There is a vicious cycle that occurs when something is wrong in a man's nether regions.
You get the crazy symptoms down there and then you freak out emotionally because these are the crown jewels.
The problem is that when you freak out emotionally the stress uses the muscles surrounding the Pudendal nerve to squeeze the crap out of it and cause the sympoms to worsen.
Here is what I would do if I were in your shoes. Just my opinion.
1. Get on a medication (temporarily) to calm you down.
2 Wait the four weeks for the medication to build up in your system and see where you are with your symptoms.
3. If the symptoms persist you need to see exactly what is going on with the Pudendal nerves themselves. An MRI done by the best in the country. Dr. Hollis Potter in NYC.
She will be able to tell you exactly what is physically wrong down there. They have the only MRI machine that can see the individual Pudendal nerves. (as far as I know)
If she is out of your network I woud sell a kidney to get the money to have it done because if you keep going round and round with your GP and chiropractors and PT's you will never truly know what the problem is.
4. Call your insurance company and ask for a list of specialists in network that deal with PNE and PN. Mainly neruologists.
5. Take or have your MRI to the specialist and go from there.
This is not medical advice and I am not a doctor but I do know how much time can be wasted bouncing around within the system while suffering.
By the way, I have had several of the symptoms that you described in your posting including the weird red rash on my genitals.
Best of luck and if you need any support I am here for you man.
You didn't write too much.
There is so much that needs to be covered when dealing with this problem.
I had PNE way back in 2004 and travled to 21 so called specialists in the country by train laying down (first class) because I couldn't sit.
I ended up in Nantes, France with Dr. Robert and underwent transgluteal decompression surgery.
The surgery helped some but not completely.
There is a vicious cycle that occurs when something is wrong in a man's nether regions.
You get the crazy symptoms down there and then you freak out emotionally because these are the crown jewels.
The problem is that when you freak out emotionally the stress uses the muscles surrounding the Pudendal nerve to squeeze the crap out of it and cause the sympoms to worsen.
Here is what I would do if I were in your shoes. Just my opinion.
1. Get on a medication (temporarily) to calm you down.
2 Wait the four weeks for the medication to build up in your system and see where you are with your symptoms.
3. If the symptoms persist you need to see exactly what is going on with the Pudendal nerves themselves. An MRI done by the best in the country. Dr. Hollis Potter in NYC.
She will be able to tell you exactly what is physically wrong down there. They have the only MRI machine that can see the individual Pudendal nerves. (as far as I know)
If she is out of your network I woud sell a kidney to get the money to have it done because if you keep going round and round with your GP and chiropractors and PT's you will never truly know what the problem is.
4. Call your insurance company and ask for a list of specialists in network that deal with PNE and PN. Mainly neruologists.
5. Take or have your MRI to the specialist and go from there.
This is not medical advice and I am not a doctor but I do know how much time can be wasted bouncing around within the system while suffering.
By the way, I have had several of the symptoms that you described in your posting including the weird red rash on my genitals.
Best of luck and if you need any support I am here for you man.
Re: My own burning hell....
Heisenberg, first of all, is your screen name named after Walter White from Breaking Bad? I love that series.
I ended up having surgery for PN in 2001 (France). I was officially diagnosed by a doctor in Santa Monica,CA just a few months before my surgery.
Just wanted to mention that I also have had one leg shorter than the other as well, long before my pain began. Perhaps this condition lends itself to making the pudendal nerve susceptible to entrapment.
Greg
I ended up having surgery for PN in 2001 (France). I was officially diagnosed by a doctor in Santa Monica,CA just a few months before my surgery.
Just wanted to mention that I also have had one leg shorter than the other as well, long before my pain began. Perhaps this condition lends itself to making the pudendal nerve susceptible to entrapment.
Greg
Had surgery in Nantes, France in 2001 with Professor Robert. I advocate physical therapy with PTs who specialize in the pelvic floor. I also advocate injections to help diagnose PN and I am in favor of having PN surgery to release the nerve when the diagnoses points to an entrapped nerve.
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Heisenberg
- Posts: 9
- Joined: Sat Dec 09, 2023 7:21 pm
Re: My own burning hell....
Mdavies38 did a MRI after your surgery confirm scar tissue on the pudendal nerves? I tried to send you a message but it has went straight to outbox for some odd reason. Recently just had transglutal surgery and am worried that I may have had scar tissue form to .. I will most likely get a redo through laparoscopy as transglutal was to invasive in my opinion.
Tom
Tom