Hi rufus444, I posted to tigreyes in error, meant my reply to be to you

Hi donfeld, try reading the Mayo Clinic proceedings at this link: https://www.mayoclinicproceedings.org/article/S0025-6196(18)30671-2/fulltext It appears that the Mayo Clinic physicians don't talk to one another!

At this point I don't know what is causing my pelvic pain as I spent a lot time at Mayo and they hadn't discovered the problem. I don't have any abdominal pain and it's seems to be in my hip areas cause my lower back into my legs. Going for injections this coming Thursday and hopefully something will happen to get some relief. Thanks for your input and I hope you just get some relieved.

On the contrary, I have found that the Mayo Doctors talk and refer to others commonly… The way that Mayo Pays the Medical Staff makes a difference …. it reduces competition … they have always spent time talking to me as well… We, the patients, have to have the correct questions… K

@donfeld

I'm so sorry to hear about your pain. I can absolutely relate as I spent many years just labeled a "chronic pain patient" because nobody took the time to think out of the box a little bit. Pain really takes it's toll on a person. You may want to get a hold of the reports from any imaging you've had done over the last few years. Look to see if there are Tarlov cyst(s) noted on there. Take a few minutes to read about them and see if the symptoms compare to the ones you are experiencing. http://www.tarlovcystfoundation.org If there are some noted on your reports bring it to your Dr.'s attention. FYI most Drs know nothing to very little about Tarlov cysts and will tell you that it's not the cause of your pain and they don't cause any issues. If you feel like it's possibly what is causing your pain then move on to a different Dr. That's what most of us who have them have to do. Eventually you will find a couple that are willing to learn a little bit and work with you. It's really best to always request your records to have on had when seeing a new doctor. This includes the discs and reports from all of your imaging. When you go in for imaging just tell the tech. that you would like a report mailed to you and you would like a copy of the disc before you leave. Having your records, and especially having your imaging discs and reports ready for a new Dr. will probably save you some money. Sometimes that won't need to order new tests if you already have your records with you.

Sorry for blabbing on & on. Just trying to offer a little advice. I sure wish I knew about this site years ago. It would have really helped to be able to talk to others experiencing similar symptoms. I've only been a member for about 2 years. Take care and I wish you the best of luck!

Terri

Hi ken82, glad to hear that's your experience. I have dx of A.C.N.E.S. confirmed by Univ Washington pain clinic. After reading Dr. Sweetser's article, I messaged him, respectfully requesting a referral for treatment (as he described in his report, "Surgical treatment with neurectomy is available for medically intractable abdominal wall pain"). I got a form letter of denial back from Mayo's Gastroenterology dept with no referral and no help. Baffling.

That is what I got from Mayo after they screwed up my surgery which caused a spinal leak that led to arachnoiditis.

Donfeld, I am speechless with anger over your post! Mayo HARMED YOU and has refused you help??? This is infuriating and– pardon me– but I am really enraged on your behalf!

@rritam

I was also turned away by Mayo Clinic but it was the neurology dept. I have Tarlov cysts pushing on numerous nerves in the sacral area. I called and asked if there was a provider that treats them. They told me they have done a few of the surgeries in the past but no longer do them. I also asked if any of the neurologists and/or neurosurgeons would be able to recommend what direction I should go or possibly a referral to another provider that has experience with them. There was no answer for me. I'm not badmouthing Mayo Clinic by any means because I did see Dr. Fealy back in 2003 (before I was diagnosed). He was fantastic and showed initiative in figuring out what was going on but I never got to follow up with him. I was very disappointed to find out that he retired.

Did you ever get treated for those cysts? I have this pain mostly in bed at night as I wake up every 2 to 3 hours.

Mayo could not help me at all! They called it restless back syndrome!?

Hello @donfeld, It is so frustrating to suffer with constant pain, especially when no one, even the professionals, seems to be able to find the cause. It wears one down. I’d strongly encourage you to contact the Office of Patient Experience https://www.mayoclinic.org/about-mayo-clinic/patient-experience. On this webpage, you will find contact information for the individual campuses, and also a general email. Staff are available to discuss comments or concerns you may have regarding your medical care. Your experience certainly sounds like something Mayo Clinic would want to be aware of and work to help remedy.

Hello @rritam, as @ken82 points out, Mayo Clinic uses a collaborative approach where multiple specialists and others are routinely pulled in to review possible approaches to patient care and to include the patient as a valued member of the team. Mayo Clinic Proceedings leverages the expertise of its authors (Mayo and non-Mayo experts) to help physicians understand best practices in diagnosis and management of conditions encountered in the clinical setting. You can read more about the journal's purpose here https://www.mayoclinicproceedings.org/content/aims.

@rritam, what treatments have helped alleviate your pain associated with your diagnosis of A.C.N.E.S.?

Mayo gets a lot of requests, and it isn't that easy to have them accept you for treatment. If I were in your shoes, I would try again and at the same time have a referral letter maybe by someone that treated you with that diagnosis, and request a second opinion about the diagnosis and treatment options. Best wishes!

I have already done that at least three times and found very little results. However, I just got a notified that one of the doctors is being retired who wouldn't give me the proper answers and gave me a real run around. After surgery I had for a herniated that went bad severe spinal leak that I couldn't get an answer from this doctor except through my portal. They gave me three choices and one was surgery which they didn't recommend again, PRC which I did already months before and to stay on opioids for the rest of my life. Not good!