A New Hope
Once again, it’s been too long since my last bout of activity on here. I’ve been slowly getting my life in order after going to the Mayo Clinic branch in Jacksonville and having to deal with moving. Since I haven’t addressed my Mayo Clinic visit I’ll do that now.
The Mayo Clinic (MC) is a very large and very pretty institute. My mom went with me (mainly to be a chauffeur for the extremely long drive). We stayed at the Hampton Inn nearby the MC, and they offered free shuttle to and from the MC. It really is a fantastic service, since the MC is huge and easy to get lost within their campus. The shuttle takes you to the exact building you need to go to and then picks you up from wherever you are (you call when you’re ready). The hotel even packed us a doggy bag to take with us since I had to go there fasting. I don’t usually do PR, but if anyone goes to the MC in Jacksonville, I highly recommend you stay at the Hampton. Plus, it’s like half the price than staying on-campus.
Anyhoo, I walked in to the building full of nerves, and walked out of it quite happily about 2 hours later with renewed hope. First you sign in on the bottom floor and deal with the finances and insurance information or they won’t let you upstairs. From there, you go up a Willy Wonka-esq elevator that speeds you to the proper level while your stomach flies into your throat and your ears pop. What a ride! It was a good thing I was already in my handy dandy wheelchair at that point or I’d have fallen on the floor (which my mom almost did). I couldn’t help but love the exhilaration of it though, and it certainly kicked my blood pressure up a notch. Once we stumbled out, we were ushered into yet another line to check in for Cardiology. They took information all over again, and then sat us down in a particular section until we were called in by a male nurse.
WHAT A DIFFERENCE! The nurse took all my medical information and for the first time ever I wasn’t asked how to spell my condition. I didn’t have to explain what it was. I didn’t have to tell him to put me in a close room because he already knew I’d have difficulty walking the weaving labyrinth of hallways. I can’t begin to describe how refreshing it was that he KNEW. The doctor I saw, a physio-cardiologist, also knew. He was more knowledgeable about NCS than any other doctor I had been to in the 11 years I’ve had it. He’d seen so many others with my condition that he didn’t bat an eyelash. He spoke of varying studies that were done for people with NCS, what drugs were tested, what the results were, what recommendations were borne of it, etc. He spoke for at least 20 minutes about every “beautiful study” he was aware of, and what treatments would probably work best for me. Surprisingly, the majority of studies he listed off determined the exact opposite of what past doctors had all told me to do. I’ve been treated incorrectly for so long, it was no wonder the NCS was getting worse!
Examples:
Old doctors: Walk!
New doctor: “Of course you can’t walk! How does anyone expect you to walk when it’s going to make you faint? You need to exercise on a bicycle while lying flat on your back.”
Old doctors: Take beta blockers!
New doctor: “Beautiful study showed beta blockers don’t necessarily help. We’re going to wean you off them.”
Old doctors: Paxil! Antidepressants! Antianxiety! You’re agoraphobic!
New doctor: “Anxious? Of course you’re anxious if you faint without warning! Agoraphobic? Hahaha! When you get home find a new doctor!”
Old doctors: Compression stockings!
New doctor: “No! Blood pools first in your abdomen area! Put compression there instead!”
Old doctors: Miscommunication between brain and heart! Go to a neurologist!
New doctor: “Your legs don’t work like a normal person since the blood pools. I’m going to teach you leg training so after a year or so of forcing your body to do what it should have been doing naturally all along you will have a long term solution.”
– Leg training includes:
Sleeping at an angle. This means I need to put the entire bed frame on a 6″ tilt beginning at the head, so that while I sleep my legs are forced to circulate blood.
Exercises for leg strengthening: leg exercises in pool, like holding onto the wall and kicking up and down; bicycle while lying on your back; leg lifts with weights while lying on your back, etc. Lying on back is important so if dizziness and fainting occurs you’re already in position. Also, legs should be the only thing exercised during leg training. The rest of your body should be at rest.
Stand for 30 minutes twice a day. This should be worked up to. Will take about 4-6 months.
Etc.
So in the end I worried for nothing. I didn’t need any big tests. I didn’t need to stay there for a week. I was in and out in a couple hours, and because I live so far away the doctor said we can do phone calls to keep in touch.
Since that day I have been listening to everything he said. I got rid of that asshole doctor who told me I’m agoraphobic and may need to see a psychiatrist (I told him off about this as well. I confronted him that he should have spoken to me about it before writing it in my record when it very obviously isn’t one of my problems. I love going out of the house!). He was so shocked someone talked back to him that after complimenting me for speaking up about how I feel, he abruptly left the room without saying goodbye. Then I abruptly left his practice.
I’ve actually been feeling better in the last couple months than I’ve felt in years. I’m more active, I’m able to walk more, and most importantly, I feel good. I still have bad days. Bad weeks, even. But the MC doctor did say that it would be on and off for over a year until I begin to see real and lasting change. I’ll never be able to have a normal life, but at least I’ve been given some positivity in that it’s possible to live a happier, less miserable one. I moved to a new community where my family and I are happy. The people are wonderful and welcoming even though I’m the only one semi-wheelchair bound. Also, I am interning again! I’ve finally found my calling, and it’s definitely not working with kids like during my last internship. I have one more internship to go and then I can graduate with my Master’s degree, and with any luck, start my career.
I’ve gotten me a new hope, and I am more than ready to begin this next adventure in my life as a mother, a home owner, and a career woman. I’m no longer a scared and hopeless 15 year old girl. I’m a scared but hopeful 28 year old. See? Progress!
Living With Neurocardiogenic Syncope (Vasovagal Syncope) / POTS (Postural Orthostatic Tachycardia Syndrome) 