Hello Dr. Corenman,
I fully aimed to get the best doctor to help with doing my fusion that I know that I need, due to the gross instability. It was difficult, but I surmised that the doctors I was met with, simply had not seen someone like myself often for them to have aimed to make me believe I was fine with all of my odd symptoms going on the way they were. After sitting in a hospital for 2 weeks, it was fully dismaying to be told “you have migraines, so try to ignore it so you can walk without a walker”…after my neck was injured like that.
It was even more dismaying to try to get therapy done for my issues a few times, but was turned down because, “Your neck is broken and unstable, why’d they send you here? We can’t risk the liability.”
So, I managed on my own to get better and then headed on a mission to find the real problem and found that contusion. I then headed to Hopkins, fully prepared to get ready for a surgery only to be told about my high VA stroke risk. Shocking, but not initially a deal breaker.
I had patients with the horrible outcomes of fusions, but none as high up as C1-C2. So, I looked to chat with others online to see how they were doing following their fusions there and it was horrifying. I read of nothing but regrets (literally) and lists of pain medications and the best mixes of them to get any relief and how to breathe through the pain to try and tolerate it somewhat.
I only heard from one who was only a few months out from surgery who was doing okay, another who after 23 years of fusion did great. But then at the ripe old age of 39, he got debilitating pain and was told his fusion was fine and to “man up” that pain was to be expected at some point from a fusion like his.
So, it is a harsh reality to be faced with me feeling unstable and at risk, but mostly pain free right now. To hopefully getting stability with fusion and potentially losing my career over pain, medications, and not ever having a clear thought again due to taking pain meds. Let alone losing the ability to rotate my head and look like a normal human again.
The doctor not knowing of the Harms technique name wasn’t a huge deal, I merely wanted to know what types of screws he’d be using (Harms being best), to know if he was using wire, and if he was planning on using BMP—just basic info. I wasn’t aiming to do much but focus on getting better. Getting the shoulder shrug was shocking, but he completely avoided telling me he did indeed use BMP…it took his nurses by surprise too after calling 3 times to find out, “BMP doesn’t sound familiar so I doubt he uses it.” Was the response I got. But he did and refused my request to use my own bone, so I had to find yet another doctor.
Blocked responses and various almost “blaming” me for feeling as I did, because it was “unheard of”…has been damaging to me—that I’ll admit. Especially being a medical professional myself, which I didn’t always indicate to the doctors, it was sad to see how doctors weren’t very use to a patient who wanted to be informed. One doctor said, “I’m just used to patients coming and saying ‘Fix me doc!”’ Then he stopped giving me much feedback.
Question: With the proposed C1-3 fusion, “skipping” C2 due to the small pedicle issue…how do you feel that may help reduce VA stroke?
How are your 25 patients doing after their C1-C2 fusions? Are pain meds and other issues still part of their life?