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My Chiari has reared its ugly head again, causing me heart problems, tachycardia! I had my surgery 19 years ago and wanted to put that horrid experience behind me! Wearing the halo brace, the pain when the tonsil fell, all of it. Right before Irma hit Florida, the pain/pressure began getting worse again! At the present time, my cardiologist found that an artery is being pinched at the site of my surgery (cerebellum). So now I have heart issues on top of everything else. At what point do you say no more! My PCP doctor has recommended that I come to the Mayo Clinic to be evaluated for my Chiari Malformation and the issues associated with it soon! I don' t know what to do! I am not a quitter and have fought this for so long! Can you provide me any advise? I live about four hours from the Jacksonville clinic. How can I go about being seen and my symptoms addressed while I am there? My doctor said he would forward all required information and make contact with you.
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This maybe the answer you are looking for,can,t hurt
Bonnie, thank you so much! I am even willing to stay there in order to get my issues resolved. Can they do this? It is such a long drive to just get evuluated. Especially, when you know what the problem is! I have reports to take with me; but, I know they will want to their own. Understandably. Just want this to be over and get the ball rolling! Thanks again for all the information and guidance it is much appreciated!
Yes, you are right! I already know its my Chiari flaring and a pitched artery in my cerebellum. Scary when they have to mess with your brain again!
Hello @oh_suzie_q, if you PCP is recommending you seek an appointment with Mayo Clinic, have you asked them to provide a referral?
Yes I'm so at that point right now. My mom just passed away recently from cancer. It's been a real struggle. She died a horrible death. I'm glad I was with her but the pain it has caused me is awful. I have suffered depression and anxiety for over 20 years. The pain I have caused people and not even realize it has been terrible. My guilt I live with everyday is uncontrollable. Yet people swear your ok. They don't understand what we go through everyday. The thought of suicide is always there and you are fighting like hell for your thoughts to calm down. I've been on venafaxlin 300mg a day plus now seraquill. I've ask my physciatrist whom I only seen once if I could go off of venafaxlin and try something new. He said no. I've said something to a doctor recently and have no idea what I said. This has happened at a job before and now it's happening a lot. Has anyone ever had this happen before? Any suggestions? Should I look for another physciatrist?
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@oh_suzie_q I drive four hours to get to the Rochester clinic in MN. Call the General Internal Medicine dept. to make an appointment. They will assign you to a Mayo Health Care Team for your first visit. You talk to this first PA telling him/her ALL of your problems and concerns. They will determine and make their reccomendations on which tests and which doctors you should see. They will set up all appointments for you from here on in. Depending on your needs and test results, this could take a few days or a few weeks. This sounds simple and it really is. If you are upfront with them they will turn over every stone. I can speak to this from my personal experiences with Mayo for over thirty years and continuing. I hope this is what you were asking and wish you the best.