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Sensory Peripheral Neuropathy

Neuropathy | Last Active: Jun 17 2:01am | Replies (18)

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@jenniferhunter

@mlross4508 Thanks, Mitch. You are welcome. I do think doctors push spinal injections to avoid doing surgery, and they tried to get me to do more injections and I refused. That surgeon later refused to offer surgery to me because he thought I had other issues causing my pain, and that spine surgery wouldn't resolve much of it. He was wrong about that because I had what is called "funicular" or referred pain that sent pain into every part of my body from the spinal cord compression in my neck. It was right after that refusal that I found medical literature with patient cases that were similar to mine in what they called a rare presentation of symptoms, and I knew that neck spine surgery would fix all of that and it did. I did a lot of things to work through my fear of pain and medical procedures and I had a lot of time to think about that. I saw 5 surgeons over two years time, and none would help me, and I contacted a surgeon at Mayo who did help me. My journey was difficult, but overcoming these fears changed my life in many ways, and I know how to work through things like this. That's really why I'm here helping other patients with my experience.

Any time you are considering major surgery, you do need to be cautious and understand all the risks that could specifically apply to you as well as the choices you have, and the benefits that can come from recovery. It's a calculated risk and there are things that patients can do to contribute to success, some of it is taking care of your health, and some of it is believing that you will have a great outcome. By the time I came to Mayo, I had read a lot of spine surgery literature and talked to enough surgeons about it that it helped me evaluate the Mayo surgeon I hired for the job. I could understand my imaging and knew that he was good by the way he answered my questions and explained what I already knew about my spine condition. You have to be proactive and ask questions that will help you evaluate the doctor. I also read his papers and looked up his background, and I asked questions about the surgeon to other doctors I saw as part of my comprehensive evaluation and every one of them said they would trust the surgeon's skill if they were the patient. I didn't feel that way about the previous 5 surgeons, and they didn't seem interested in helping me or answering questions, but they didn't understand my symptoms. I was always nervous meeting a surgeon because of what I was facing and that is when I started my mental games to distract myself from worrying. One of the things I did was to draw sketches of a previous doctor from his web photo and it helped me see him as a real person instead of a doctor. When I met my Mayo surgeon, I wasn't nervous, and I asked him if I could draw sketches of him and he let me take a few photos. While I was waiting for my surgery, if I got scared, I got my sketch book and drew him because I needed to associate him with good things. I had to concentrate a lot to do that and because I only draw or paint things I like, it gave me a way to like him and connect with him, and to think about him as a person outside of his career. Every time I had a surgical consult with the others, it was a test of my ability to cope with the reality of my situation and they gave different advice, and none of them got it right. I needed 6 surgical opinions to find one good opinion and I am so glad I advocated for myself even when I was afraid. Knowledge is power and it helps to make an educated decision, and a patient needs to be ready and confident to make that decision. Here is my story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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Replies to "@mlross4508 Thanks, Mitch. You are welcome. I do think doctors push spinal injections to avoid doing..."

Jenniferhunter- thx for your insight and perseverance in going through 5 Drs before committing to surgery. It’s scary. I’ve had 4 surgeries, and in hindsight, I wish I had done more research on my condition and look up the medical terms they were using regarding my surgery. I knew in general what they were going to do, but I had no idea of how high the percentage is in failed back surgeries. I count myself as one of those statistics. Too late so I go to this forum for information and emotional support, and understand that I’m not alone, and that there are people in worse shape than I am in. So I am thankful for that. I thank you for your support, encouragement, experience and your story, and an example of a coping mechanism in drawing when you are having a rough time. Very smart. I’d have to resort to color by numbers with my skill level- or lack there of !!
So keep posting and helping us stay positive. Mitch