Connect
← Return to Can't Get Help. What Next?
Discussion
Comment receiving replies
@faithgirl30 Sometimes you need doctors outside of mainstream medicine. I found that out some years ago when I discovered my environmental medicine doctor, and I don't know if Mayo has this specialty. Over the years, there have been lots of things doctors have missed that I have figured out for myself. I've been badly treated by a spine surgeon's nurse who didn't understand my real symptoms of spinal cord compression and she was protecting the surgeon's time and refusing to make a followup appointment for me. Years earlier, when I had carpal tunnel surgery, the surgeon completely missed that I had thoracic outlet syndrome and when I went back to see him with my hand turning purple, he took my pulse, told me I was fine and accused me of malingering. I was able to figure out this diagnosis before my doctors did, and I had to find another opinion elsewhere before I got physical therapy for that. Unfortunately that became a work comp case and I was badly treated by a lot of people and doctors who were hired to try to discredit me. Through all the hardship, I developed a sense for figuring things out and researched everything on my medical records. I know this is hard to be pushed away by doctors. It's easy to take things personally. Sometimes it takes years to figure things out. It has for me in certain instances, but I never gave up. When I wasn't getting anywhere, I was always paying attention and reading research. I found the diagnosis that was missed by a well known spine surgeon (with the nurse who refused making appointments) that explained my unusual pains from my spine problem. I felt awful about that after spending 6 months doing every test the surgeon wanted only to have him decide not to offer surgery to me. I had been a patient there for 10 years for thoracic outlet syndrome, and the doctors that knew me would not help me address my findings with the surgeon who missed the diagnosis. No one would point out a mistake. I was crushed, but I got online and looked for another doctor. While Mayo is a wonderful place with very good doctors, it's not the only place. If you haven't tried an integrative doctor before, that might be a good choice and you can find that closer to home. You are not alone. Take some time and work through it, and then find someone for another opinion. As Colleen suggested, you should contact the office of Patient Experience in case they can work out a solution. I don't know if that's possible, but why not try and your complaint will be heard. The Cleveland Clinic is supposed to be similar to Mayo and was also suggested to me when the spine surgeon dismissed me. Mayo was closer and we were driving, so I came to Mayo. My dentist actually said something to me that helped. He told me that I wouldn't want someone operating on my spine who didn't understand the problem. That made me feel better. We don't want doctors guessing what is wrong and treating based on that. I had to find a lot of strength inside me and I felt bullied. I also had to face a lot of fear I had and learn to advocate for myself. You can do this too. If you can think about it in those terms where you make a choice not to see a doctor who doesn't understand the problem, it might make you feel better and more in control of the situation. If I have given you any ideas that you think may help, acting on that will make you feel better regardless of your Mayo experience. It's about advocating for yourself and choosing another doctor for the job. Think about the clues you have in your symptoms even if no one listened to them before. That can lead you to the answers. If you share more of that here, we can try to help and see if there is something familiar. Don't give up on yourself; get past those feelings and try again.
Replies to "@faithgirl30 Sometimes you need doctors outside of mainstream medicine. I found that out some years ago..."
@jenniferhunter Thank you Jennifer for sharing your story and trying to provide hope in the midst of challenging circumstances. I appreciate your reminder to advocate for what we need. That’s really difficult sometimes when you feel so lousy, but I’ll keep trying.
You asked about symptoms:
1. Overwhelming and totally debilitating Fatigue. I sleep 10-14 hours a day and never feel refreshed. This began about a year ago after my fifth spinal neck surgery. It was like someone flipped a switch one day. I used to be really active teaching and leading classes, providing spiritual direction and counseling. Now, a shower zaps all my strength in a day. A fifteen minute phone call with a friend requires 3 days of recovery. My husband tells people that my energy level has been at zero since my surgery, October 2019. AM cortisol levels have been consistently low but 2 cortisol stim tests seem to indicate that my adrenal glands are functioning. Still, I suffered a really extreme UTI a month ago that went from just showing symptoms to the worst I’ve ever had in just 3 hours. I ended up in the ER peeing pure blood. It was as though my body had absolutely no ability to fight infection. This scared me.
2. Nearly 60 pounds of unplanned weight loss. I’m really struggling to eat because I don’t feel well. Food can smell good and I can be hungry, but after 1 or 2 bites, I can’t eat any more and nothing tastes good. I try to eat anyway because I need the nutrition, but every day it’s a struggle. Even my favorite foods aren’t appetizing.
3. Just last week my primary care provider said that after reviewing several years worth of labs he noticed a pattern. He said I had “thick blood” - a consistently high red blood cell count and hematocrit and low lymphocyte count.
4. Daily chronic headaches. We initially thought these were a side effect of my last 2 neck surgeries, but now we aren’t so sure. I have undergone 5 cervical neck surgeries in the last 4 years. I am now fully fused between C2-T2 and have had rods placed in the back of my neck for stability. I recently went through my first round of Botox injections for migraines and torticollis/cervical dystonia. I lost a good amount of movement with this surgery and headaches were expected, but they may due to other issues as well.
5. Blood pressure variability - high one moment, too low (70/50) the next, with dizziness.
6. A profound sense that there is something terribly wrong. I feel off. I can’t necessarily point to why I feel this way, but I don’t feel like my normal self. Just once I would like to wake up in the morning and think “Wow! I feel pretty good!” Instead, after sleeping 12 hours I get up and think, “ it won’t be long before I need a nap. I’m still really tired.”
I should mention that my last neck surgery didn’t go quite as planned — as that’s the time frame when the extreme fatigue began. It was supposed to be a 6 hour surgery, but it actually took 8. The surgery went through the back of my neck and included the addition of rods which run from C2-T2 and involved the removal of a spinal cord stimulator that didn’t provide the pain relief we had hoped. My surgeon (who I love and trust with my life) punctured the dura while trying to remove a large amount scar tissue around the spinal cord stimulator paddle. This led to a spinal fluid leak that landed me in the ICU for 2 weeks as I experienced spinal headaches. In addition, I experienced severe pain post surgery. They utilized steroids to help decrease inflammation, but this led to the skin along the incision not healing and causing a sizable Seroma on the back of my neck. My surgeon was terrified that the seroma would become infected leading to sepsis, but thankfully that didn’t happen. Still, I had high CRP levels for months after the fact and I was on high dose antibiotics while we waited for the seroma to heal. After being discharged from the hospital, my surgeon actually made daily visits to my home to make sure I wasn’t developing an infection in my neck.
Connect
@jenniferhunter thank you for sharing so much with us! Shared stories are what keep me fighting.