A Thoracic Spine Patient’s Battle Guide
and few tips for doctors.
How can I make my doctors listen to me?
You can't. Doctors are people like anyone else and most people never learned how to truly listen. Not everyone have the ability.
But there are things you can do:
1. Bring backup: Preferably a man (sad but true)
2. Make a List of your symptoms: Including when they started and what makes them worse.
3. Don’t talk about your emotions/traumas. Don’t mention anxiety, Don’t beg, by firm.
4. Test their honesty: If they can't handle your directness, your symptoms and they’r still acting deaf, you probably need to see a new doctor. You can always get a second opinion.
Doctors: To say “I don’t know” is better than a misdiagnosis. “I have never seen this condition before”, “I’m not trained” save lives.The best professionals, writers, architects, engineers and the best people are the honest ones.
How to get a thoracic spine MRI referral?
By directly asking for one, be firm. If you wait for your doctor to offer you one, you will probably wait for a life time.
Doctors: Your patients are locking for a diagnosis, help them please. And stop acting you are paying for the MRIs, it looks suspicious.
Doctors think I'm crazy, that “it's all in my head”?
Pain and neurologic symptoms are not a problem of the mind. A mechanical issue should be treated for what it is. Pain must be addressed and managed properly.
Maybe see a psychiatrist. Explain that you have a spine injury and describe your pain and symptoms. A good professional will understand.
I interviewed two psychiatrists; one works at a major hospital here in NYC. He told me that every single day, at least one person ends up in their ER due to a suicide attempt or severe suicidal ideation triggered by unresolved back pain.
The second psychiatrist works in rehab and expressed deep frustration. Many of his patients are injured; they don't need rehab they need pain medication to function and survive.
We agree that an addiction is a disease, and not everyone suffers the same disease. Untreated debilitating pain it’s a different beast.
Doctors: To dismiss a patient's pain and symptoms does only one thing: it fuels suicidal ideation. It tells them that no one believes in the reality of their suffering. If you are not a psychiatrist stay in your line.
-I’m not a doctor, and I do not provide medical advice. However, I am open to providing insight from the patient's perspective.
If you are a doctor reading this and are interested in understanding complex spinal conditions, please feel free to contact me.
What if all the doctors were wrong and I was right? this is an email I sent to my neurologist:
No surgeon wants to see my thoracic spine MRI, two say that I must get a fusion on my neck, and two say I shouldn't.
It seems to be up to me and I will only make a decision when I find a surgeon that's not afraid of vital organs and ribs. I won't be able to make a choice until I find a surgeon that can see my spine as a whole. Because to see and to understand are like the same thing.
At what moment did this stop being rational and my thoracic spine stop being part of my back?.
I had an accident and my back is damage, at what point did my thorax become an excluded area like Chernobyl, or an unspeakable thing like Voldermort? Or is it invisible? The only invisible thing right now is my ass because I'm losing weight in a bad way.
I have constant and stabbing pain and the symptoms come from T7, T8, I've found this: "Sometimes other tests maybe ordered because herniated thoracic disc pain and symptoms can mimic heart, lung, and stomach conditions" I found around 200 case reports and they mention my symptoms: "Unsteady gait", "Ataxia", "Progressive weakness", "Heart and lungs discomfort", "Constant headache".
My symptoms have been ignored by a bunch of men who think I have anxiety, and those same men get too anxious to take a look at my MRI. Have you seen the MRI?
Do you think I'm going to blindly accept a half-baked diagnosis made by people who are incapable of looking at an MRI.
When was logic lost and this became a matter of belief?
I'm not denying that my neck is a problem, but I know that the thorax is a bigger problem, and if I need a fusion in my neck, what do I need in my thorax?
thank for reading,
Sofia
-My neurologist wasn’t angry about the email, he agreed with me. That’s how I found an excellent doctor, whom I always recommend if you need a neurologist in the NYC area.