Hi, @joanmahon - I'm hearing your feelings of desperation and especially cognitive losses. I'd feel that way, too.

What I'd suggest is that you contact the Mayo appointment experts, online or by phone, at this link http://mayocl.in/1mtmR63, and they can tell you how to best proceed.

A couple of threads you might want to check out are these on normal pressure hydrocephalus (NPH). You might share with the patients there some of what your doctor mentioned about NPH and see if they have thoughts for you.

- https://connect.mayoclinic.org/discussion/brain-injury-white-matter-encephalopathy-and-encephalitis
- https://connect.mayoclinic.org/discussion/nph-and-dealing-with-work/

I'd also like you to meet, if you've not already, @jenniferhunter and also @hopeful33250, who may have some input for you.

In the meantime, how are you managing your day-to-day life with the diminished cognitive functions you mentioned? In what ways are you seeing these show up?

@joanmahon Hi Joan. I think you are doing just fine in advocating for yourself, and I think you will be able to navigate and make good decisions. Sometimes that is difficult when you get conflicting opinions. I think you are correct to not put a lot of faith in a doctor who discredits your condition. That being said, they can easily miss a diagnosis. I am a spine surgery patient and 5 of the surgeons who saw me got it wrong. One suggested a spinal tap because he couldn't explain why the spinal cord compression I had in my neck was causing pain all over my body, and he was trying to suggest a differential diagnosis of something inflammatory like MS. He didn't listen to me when I described how if I turned my head, I could change where I felt pain in my body. I had bone spurs growing into the spinal cord and it changed where the pressure was applied when I turned my head. I knew I didn't have MS, and a neurologist who reviewed my MRIs with me said she didn't see any evidence of MS on my images which should show something if I had it. I didn't have a spinal tap. I had already done a diagnostic epidural injection for this doctor and he ignored the results because he didn't understand why I had relief of all of my pain temporarily (the body and leg pain too). He thought I should just have arm pain. I agree that you need a multidisciplinary approach like Mayo. My experience at Mayo is at Rochester where I had spine surgery that resolved all the pain I was having. When you get evaluated at Mayo, they consider everything and reconfirm the diagnoses that you have, and they look for other possible causes for the problems. You shouldn't diagnose yourself and start believing that you will have cognitive losses because of what you are thinking now based on one doctor's opinion that isn't completely acceptable.

I also went through something like that when a surgeon said I had significant spinal cord compression and needed surgery, and he wasn't willing to take time to answer my questions. When he heard that I was having balance problems and pain in my legs and body, he told me to go to a rehab doctor and fix these issues, then I could come back for spine surgery on my neck. I couldn't fix these issues because they were caused by the spinal cord compression. He caused a lot of fear by being arrogant and unavailable and because he was the first to say that I needed surgery. Even though you expect to hear that, it becomes a real situation when you do hear it. What he and the others missed is that spinal cord compression can cause pain anywhere in the body below the level of involvement. I found medical literature with cases like mine because I looked up a surgeon at Mayo and read his papers and I looked up a term that described "funicular pain" and that led me to find case studies like mine where patients had unusual and unexpected pain... like leg pain that was caused by a cervical spine issue and that was later resolved by neck surgery. I sent a copy of that study with my request for an appointment to this surgeon at Mayo and he took me as a patient and changed my life.

This is a very stressful time for you to have symptoms getting worse and seeking help which will affect your thinking. Stress can make you very forgetful and make it hard to figure things out and solve problems. The best thing you can do right now would be to do whatever will help you get through this time of waiting and worry. Music can help you relax and get your mind off the troubles. If they determine that you will need a shunt to relieve pressure on the brain, I wanted to share a bit about that. A elderly family member went through that and it was an easy recovery. I hope that can put your mind at ease if that is something in your future.

Your doctors need to determine if your new symptoms are caused by the AA or something else. If you don't have current imaging of your complete spine, you may want to request that to look for or rule out other spine issues. You may want to consult a functional medicine doctor about causes of inflammation in your body. Sometimes you can improve things by making simple changes. Body wide inflammation will cause specific inflamed areas to become worse. Things like food allergies, gluten intolerance, seasonal allergies, hormone imbalances and infections (like those caused by dental infections such as a bad root canal) and toxicity can all increase body wide inflammation and contribute to autoimmune disease. I just had this conversation with my doctor yesterday. That is why it is so important to try to prevent problems rather than treat symptoms. I think if you do get appointments in Jacksonville, that would be a fine place to start. They certainly can consult any of the other specialists at other Mayo campuses. You may want to ask about which are the accepted insurances or Medicare since that can be different at different campuses before you start. I started with a specialist that I selected based on his area of interest and how closely it matched my needs and Rochester was closer for the drive. You can do that too, and you may want to ask your primary doctor to help you choose, or you can call a department and ask who would be be a good fit.

Joan, I think that from the clarity of your post that you have the ability to empower your decisions, so believe that you can. I went through some difficult days too when I worried if I would become paralyzed by my spine problem when for 2 years, every surgeon I saw refused to help me. I also had huge disabling fears of surgery and was working through those fears. Even through I was afraid, I learned to advocate for myself. Every appointment was a new test for me to gauge how well I was handing my fears. I had worked out a lot of things that I could do to understand and confront my fears, and distractions that involved art and music.

You might enjoy this. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/