Hi Kristin-
I'm glad you have such a supportive husband who knows supplements. I have taken most of those myself. Be careful with NAC because if you take too much, it reverses what it is supposed to do in helping detox (precursor to glutathione in the body) and will cause extreme thirst until your body processes it which could take days.

If you would like to talk about fear of surgery, I can help you with that. One of the doctors I saw before coming to Mayo started some huge anxiety for me. Every day when I woke up and thought about spine surgery, my heart raced and blood pressure spiked and I literally felt like I was going to get hit by a train and was stuck on the rail road tracks. That went on for 4 months every morning and then I asked myself WHY was I doing this to myself? I worried about my heart health and understood this because my dad had heart disease. During this time, I was taking care of both my elderly parents who were disabled and in wheel chairs.

I have a biology degree and my first job after college was working at a university in neuroanatomy research, so I knew enough to be able to understand a lot of medical literature. I knew if I didn't confront my fears, that I too would become disabled. I wanted to be able to maintain my health and balance as I age and I feared loosing my ability to paint more than facing surgery. I got through carpal tunnel surgery years earlier with clinical hypnosis which worked like magic.

Then one day I realized that I wasn't born with this fear. Fear is learned somewhere along the way. If fear was learned, then it could be un-learned and deprogrammed, so I set out to discover the source. I didn't want fear to control my judgement and I knew that I needed surgery to have the quality of life that I wanted and needed to pursue my art. I didn't want to loose the ability of all the years of art training and experience I'd had. I made friends with my fear and decided it was OK to be afraid. I asked one of my doctors if he was afraid when he had emergency heart surgery and he told me yes.... so that made it OK for me to have these feelings. I started writing down all the events in my life that caused my fears and looked for a pattern. I watched TED talks on fear. I listened to music and did deep slow breathing to learn to lower my blood pressure and I could lower it at least 10 points. Then I started singing.

I was afraid of going to appointments with surgeons and I used everything I could find online about a surgeon for an up coming appointment to help me. I watched his videos to be comfortable with his manner and voice. Then I started watching him while I listened to the music I had learned to relax with and I sang to his picture every morning during my music and breathing sessions. I went even further by drawing pictures of the surgeon. It was my head game because I only draw or paint things I like and I needed to like a doctor to be comfortable. All 5 of the surgeons who had refused to help me were training for me to be able to face my fears of them.

By the time I came to Mayo, I was getting control of it and I asked my Mayo surgeon if I could take his photo to draw pictures of him and told him I needed to like him. When I got an offer of surgery at Mayo right away, I was relieved and happy; not afraid. Of course I had some nerves the day before my surgery, but I managed not to worry until then. When I needed to release nervous energy, I drew his picture, and I e mailed images of them to his nurse. All of this made a very personal connection to my surgeon, and the first thing I wanted to do when I was recovered enough was to paint his portrait.

Soooo..... at one of my post surgical followups back at Mayo, his nurse scheduled the appointment for me on his surgery day. We sprung it on him and I had my camera. He started having some fun with it and was strutting around the room like a model and I could not stop laughing. I really miss being at Mayo. That could only happen here in that moment. Who knew seeing a neurosurgeon could be so much fun! I had set a big challenge for myself and I needed to prove to myself that I had regained the ability to do this. A couple months before my one year follow up, I sat down and painted the portrait.

I really looked forward to the next appointment, and I hid the painting behind the curtain in the exam room. So after the medical things were discussed came the unveiling.... and he loved it. I love the painting too and is says more than my words can about how kind and compassionate this man is and how grateful I am that he helped me regain my most precious gift.

I didn't know going through spine surgery could be like this. I decided to join my surgeon's team and what I brought to the table as a patient helped me with hope and healing as much as the medical skills of my team. The surgery did not hurt as much as I imagined that it would and I found I could tolerate my recovery without pain medication. Fear increases pain a lot, so getting control of it really helps, and ironically pain is what I learned to fear. I knew that a great recovery was possible and the earlier the intervention, the better. I decided to see my surgeon more as a person than the gifted surgeon that he is because it helped me relate to him and gave me the comfort and emotional support I needed. I learned how much power a patient has and how important it is to advocate for yourself. That is really the reason I am here writing this now because a few years ago, I didn't think that I had the courage to go through with major surgery. I know what it is like to be imprisoned by fear knowing that a brighter future is out there waiting, and I still have important things to do in my life. If I can help another patient see the possibilities in their own journey, then I will have succeeded.

Here are a few books that might help and I read them as part of my journey. "Back in Control", by David Handscom MD.

Dr. Handscom is a spine surgeon who also became a spine surgery patient and his views from both sides of the table are very interesting. It was reading this book that helped me understand how much stress a surgeon has, and I wanted to know that I was in the hands of a surgeon who was happy with his life and work. Physician burnout is a problem and I wanted a doctor who wanted to be there for me. This book is about overcoming chronic pain. http://www.backincontrol.com/

The other books are by Dr. Sood at Mayo and are about building resilience in your life. His books explained why I succeeded with my routine to beat the fear and why it worked. Our brains are wired to respond to stress and fear above all else as a survival mechanism, and just knowing that is empowering in knowing that you can get past it.

The "Mayo Clinic Handbook for Happiness" and "Mayo Clinic Guide to Stress Free Living". Both are excellent. One is more of a workbook type with exercises and the other is more detailed.

Here are the links to his books https://marketplace.mayoclinic.com/shop/healthy-lifestyle/book/mayo-clinic-stress-management-combo_752700

I also read "Joined at the Heart" by Pete and Erin Huttlinger which is the story of Pete, a well known musician, who had many medical interventions because he was born with a serious heart defect. This helped me because I knew Pete and here was my friend with a much more serious problem and he embraced it with grace and gratitude. Pete put his energy into overcoming the obstacles.
www. petehuttlinger.com

Let me know if I can answer anything else.

@krissylamb Sad to say, but reading your report was very good for me. I finally found someone who is in my class of numbers of illnesses and symptoms, although you are far ahead of me in medical care. Mine is Gelsolin, a form of Amyloidosis. Just getting a diagnosis is a fight to the finish, I guess. But you have contributed to my diagnosis significantly. For a quarter century I have had a series of "..quarter sized lymph/serum filled sores oozing on the back of my head and neck." When one of them is hit fairly hard or punctured, it will bleed and ooze. Even a small child hitting me on the back of the shoulders or on the upper leg or arms will cause it to ooze. Once I happened to puncture one somehow, like with a needle or something. It oozed and bled for a couple days. It oozes foggy stuff the consistency of Elmer's glue. I don't know what it means, but I will find out. My story is at https://bit.Ly/1w7j4j8 "Amyloid and Old Karl"