Hi guys. This is a long one but I would appreciate anyone taking the time to read it and give me support or feedback.
I am strongly considering trying to go to Mayo Clinic to see a team of specialists. I have arrived at this for many reasons. I had a pain psychologist try to get me to just give up and "accept" my pain, but I do not feel like the doctors who have been responsible for diagnosing my condition have really listened to what I am telling them. There are some very specific details of what causes my pain, and what makes it go away. My pain is caused by being (usually sitting) in one general position, and I can almost completely make my pain go away by moving my body into certain positions. Unfortunately, those positions are not one a person can hold for longer than a few minutes. It would be impossible for me to live my life holding my arm above my head for ever. I won't go into detail but I have arm, shoulder and neck nerve pain. I have had two spinal fusions, the first of which I don't think I needed but my doctor didn't know what else to do. I KNOW where my pain is coming from, but my doctors never listen to me. It is my closest friend. When I think they are on the right track, they end their 8-minute visit and send me for a cat scan or an MRI (never of the part of my body where I am telling them my pain is coming from) or to a new specialist, and then I have a follow-up appointment a month later and the doctor has forgotten everything we talked about and only goes off what the radiology report says (again, of the wrong body part). They refer me to different specialists and then never have an actual conversation with the referring doctor, they just go off a very brief medical note, which often contains the wrong information (easy stuff, like my age, gender, what surgeries I have had and where, etc).
SO, I need to get to the bottom of this. I feel like I know what is wrong with me but I don't think the US health care system is capable at this point of really figuring out what it is with the methods they are employing these days. I need to be in the care of a doctor or two who will see me and talk to me again immediately after my testing so we really solve the problem. I can keep taking pain meds, continually upping my dose, just to get through severe pain that I think could be prevented with the right treatment, but I can't get any medical professionals to be willing to do this with me. I have a physician's assistant who is great and spends a lot of time with me, but she has to get everything approved by the doctor, and the doctor just wants to get patients in and out, get your prescriptions, pay on your way out, and come back in a month, and on and on and on.
Some of you may think I'm just crazy and I'm going to end up disappointed, but I know what my body is telling me. I don't want any more MRIs until they agree to scan the part of my body where the pain is coming from and they agree to scan me when I'm in the position that produces my pain. UGH You would think this would be the logical answer to any reasonable doctor, but I have not had luck getting this done in 3 and a half years now.
Can anyone give me any positive words of advice? Please? I went through this with my dad. He had a very complex medical situations and I watched him suffer through doctor after doctor, hospital after hospital with doctors who would repeated make the same mistakes previous doctors had made and no one really took the bull by it's horns and stuck through it with him to really provide any meaningful treatment for him. It wasn't until he found a Dr. that was very curious and willing to step outside the box and take more time than traditionally allotted with him to finally solve the problem.
I have researched getting a referral to Mayo and I think I could do it. Not sure at this point if my insurance will cover, but I think it will. I have friends in MN that I could stay with. Can anyone who has gone this route talk me through it? Please help.....
I would definitely go to the Mayo Clinic if I were in your shoes. Everything that you wrote made complete sense to me. A friend of mine went to the Mayo clinic and had a great experience there. She was able to get a diagnosis. Her treatment changed after she went there, but unfortunately they have not been able to control her pain as much as she would like. That said, it helps, moving forward, to have a firm diagnosis that doctors agree on.
So, I would do it. They were VERY kind to her there, and all of the doctors took her case very seriously. They were not dismissive at all. The set up of the clinic, in my opinion, is how things should be in the medical field. I think that everyone should be on the same page. I think that patients should be privy to what is going on with test results, etc. I think that doctors should collaborate so that patients get the best care.
It seems to me that since doctors only see us for a few minutes, sometimes for an hour, that in many cases when we leave they forget about us. Most doctors. have no idea what it's like to live with constant pain. I hope that you find out exactly what is going on. I think that it would benefit you a lot to go to the Mayo clinic.