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pamclark (@pamclark)

ABI, Cough Syncope and Seizures

Brain & Nervous System | Last Active: Jan 27, 2019 | Replies (11)

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@pamclark

Omg. My heart just sank into my feet. I will show your message to the family doctor.
There was no neck or spinal injury.
However, Michael has acute neurogenic hypertension, and the turning red was not present for the first few years. The episodes are becoming more terrifying by far.

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Replies to "Omg. My heart just sank into my feet. I will show your message to the family..."

@pamclark Hi Pam. I wanted you to know I'm thinking about you and I certainly don't want to cause stress. I am not a doctor, but I have a biology science background and I learned a lot by my own personal health experience, and by advocating medical conditions for my elderly parents, and I've read a lot of medical literature. I read everything I could about spine related issues when I was going through that a couple years ago for myself. I'm guessing you might live in Canada? I hope my comments have given you a path to advocate with the doctors. If you are unable to find the right specialists, you may want to call Mayo. Paying out of pocket is an option to be seen at Mayo. Mayo does prioritize according to the urgency of the case, and sometimes they accept charity cases. Mayo might be able to consult with your local doctors and assist in your care where you are. You have to ask and see what they say. It's a phone call that could change his life. I know that Mayo will review imaging for prospective patients without charge, and let you know if they think they can help. If you are accepted as a patient, you would have cost when you begin having appointments. There are also costs for travel and hotels, but there are also some churches who help with low cost housing in Rochester.

I came to Mayo after 5 surgeons misunderstood my spine problem. I sought help for 2 years, and I was just getting worse, and loosing the ability to hold my arms up. None of them would help me. I found medical literature with cases like mine, and I knew what the doctors missed, and even doctors I had seen would not help me confront a doctor who had missed the problem and was dismissive. That wasted 6 months and then he opted not to operate, and the only solution for my spinal cord compression was surgery. They were not listening to me because they didn't hear something they recognized, and they didn't ask the questions to think about it differently. That is what I hope to do by the questions I bring up, to ask the "how" and the "why" of explaining a medical condition to understand how the body works. Even though I was afraid of having surgery, I was also afraid of not having surgery and what my life would become.

Mayo is totally different and efficient in how they interact as a team with all the specialists, and they accomplished in 3 days what 5 surgeons could not in a few years. The missed communications, waiting for tests, and waiting over and over, tests sent to the wrong offices…and then they don't know what to make of the tests….. that didn't happen at Mayo. They are efficient and don't waste time. I wish I had come there first because the expert knowledge of the Mayo doctors was so much more than the local doctors who were scratching their heads and not willing to spend enough time to figure out the problem. I do hope you find the help Michael needs.

I saw your mention about the thunderclap migraine and here is a Mayo link about that, and it seems to fit with the other symptoms and is related to seizures. You had mentioned something an incident at the beginning of the problems. Are you able to share how this started?
https://www.mayoclinic.org/diseases-conditions/thunderclap-headaches/symptoms-causes/syc-20378361

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