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@jelizabeth

My sincere apologies. I have read your posts and you have been through a lot of unfair treatment. Doctors are terrible people, evidently, unless you are rich. Is pudendal neuralgia your final diagnosis or did you manage to find a doctor that would tell you more? I have another LONG story if you have time to read it. A new gynecologist got my hopes up last year. She said she also had training in pain management and a degree from Boston, and that I could have a pudendal nerve problem, so I went on another wild goose chase, this time to Dr. David Prologo at Emory in GA. I had spoken to his office and my PCP had sent records. I was supposed to have some kind of diagnostic injection, and then cryotherapy. Dr. Prologo spent five minutes with me and said my problem sounded "central" and that he was sure the injection would not work. His "secretary" (that had told me to come) suggested that I let them make copies of my discs and said she would give them to one of the radiologists that specialized in spinal nerve injuries, but I never heard a word, even after leaving a message four weeks later. I don't know if you have seen anyone for pudendal neuralgia, but Dr. Prologo would probably look at your imaging if you sent it. I also know of a lady from Knoxville that had levator ani syndrome and went to a doctor in Boston (retired now) who performed a successful surgery. Her recovery has been long, but she is much better now. I didn't mention in my other post that the anal pain I have had for seven years was miraculously gone after the my last back surgery, but the area felt "iffy" like if I bent over or moved too fast the pain would come back. I had worse right leg and foot weakness, and my toes drug on the floor three weeks later. I fell on my knee. It wasn't a bad fall, but I could feel the anal inflammation returning and sure enough the same pain was back by the following day. I wanted to kill myself. I had to go back to Charlotte and see a physician assistant. He did ONE X Ray and that was it. He finally agreed to do a MRI on the stand up machine, but I had to wait for a month to get in. I received a call from an assistant who said I should not wait this long because there might be a problem, but she wouldn't tell me what it was. I had a traditional MRI, without contrast, and didn't show anything to explain the anal pain. It did confirm that the nurse in the hospital had not removed all of the surgical drain, which showed up on the X Ray and the doctor was able to see all along. The MRI protocols were, therefore, not to visualize L5-S1, they were to see the surgical drain. The physician assistant had put in my records that he didn't tell me about the drain because the doctor wasn't aware. I don't think the radiologist saw it the day I was there. I had to go back and have the drain removed in day surgery by the neurosurgeon. He had said before doing the back surgery that he thought surgery might help my pain at L5-S1, but after the fall he said he had no idea why the pain was "temporarily gone". What a turn around, but he wouldn't talk to me about it, so I don't know if inflammation caused the pain to return. I had another fall, on concrete, two weeks after the first fall, which has caused a huge spread of muscle and nerve pain, and numbness in my feet. I had a pain pump put in, but it isn't helping at all and I suffer constantly. My insurance changed and I now have the only kind the doctor doesn't accept. I am having to pay for the office visits and pain pump refills until I meet the out of network deductible. I had another MRI but it couldn't be done on the 3 Tesla, because of the pain pump. Results-possible fluid at the insertion site and images of "severely reduced quality". The pain pump rep. failed to tell me that the pain pump would cause a lot of artifact when I asked if I would still be able to have MR imaging, and I won't know until my follow up what, if anything, will be done about possible fluid collection. If you managed to read all of this THANK YOU.

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Replies to "My sincere apologies. I have read your posts and you have been through a lot of..."

I am so sorry I missed your post way back in Feb. I hope you are doing somewhat better? How painful. I feel for you. Wow. My story is a long one also and I got jerked around by my initial primary Dr. and pain management Dr. and many many other Dr’s in a close tight circle and they ruined my life by not being truthful and I fought for the truth and I proved it was pudendal Neuralgia but it took over three years of testing and Dr’s passing me around to get my painful needed results and now I am on Medicaid because the state did not except all the dr’s diagnosis of “spasm” when I filed for disability when I had to leave my job three yrs ago. It took me so long to fight this. All this Dr’s should be ashamed of themselves. Don’t Dr’s sign a code of ethics when they become Dr’s?

@jelizabeth I read your story and wanted to let you know that Myofascial release can help pundental nerve pain in some patients according to information on the MFR website and information from John Barnes, the creator of the MFR methods. We have a discussion with a lot of links and information and videos that show a therapist treating a patient. MFR can be a long process to work through and release layers of tight tissue and fascial scar tissue that can be caused by surgeries. I do a lot of MFR work because I have thoracic outlet syndrome and I am a spine surgery patient. Here is the link to the discussion. You may want to look through all the pages. The first pages have lots of information followed by discussions with Connect members who are interested in or have tried MFR with physical therapy. I don't know if having a pain pump would be a contraindication for MFR work because of the implanted connections, but that would be a question for a MFR therapist.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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