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Jeff
Diagnosed with ME, POTS, MCAS, CCI/AAI, & Tethered Cord. Working on the puzzle of complex chronic illness.
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Jeff Jun 19
Stanford is now formally studying people with ME and CCI.
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Jeff Jun 13
Replying to @BShuell @jenbrea
I did, and the TMJ resolved after my fusion.
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Jake Sidwell Jun 6
Replying to @jakesidwell
I spend almost 24 hrs a day in bed. Getting up to make food or use the bathroom will usually have me out of breath, and I will crash if I spend more than 2-5 minutes standing/walking.
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Jeff Jun 6
Replying to @KSkarenscott @jenbrea
Thank you, Karen!
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Karen Scott Jun 6
- Some people have said they may not be able to cope with upright MRI so I asked Medserena for suggestions they could offer
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Jennifer Brea Jun 5
"Then we went to thirty pounds of traction. At thirty pounds, something extraordinary happened. I did not anticipate it. It took me by complete and total surprise. I felt…normal."
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Jeff Jun 5
To clarify: The patient only makes the decision insofar as they choose which neurosurgeon to see. The neurosurgeon will give their opinion and their reasons behind it. You can accept their opinion, and/or you can get another opinion (if able).
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Jeff Jun 2
Replying to @shilla @jenbrea
In my own case, the collar did nothing for my POTS or PEM. It helped only with dizziness and difficulty breathing. The *halo* is what completely relieved my POTS and PEM. And then the fusion did the same. Good luck with this!
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Jeff Jun 2
Replying to @shilla @jenbrea
I needed immobilization and traction, both.
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Jeff Jun 2
In conjunction with a specialist neurosurgeon (or two), yes.
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Jeff Jun 2
There's disagreement on this point among the specialist neurosurgeons. Some believe that AAI alone, if treated with a C1-C2 fusion, will almost inevitably contribute to an unstable occiput (C0) to C1 later on. So C0-C2 is offered. Others disagree and perform C1-C2 in isolation.
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Jeff Jun 2
Replying to @jenbrea @shilla
I slept in mine when I was at my worst, pre-fusion. In order to continue breathing, had no choice.
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Jeff Jun 1
Replying to @shilla
I don't wear it while sleeping. The general advice from neurosurgeons is to limit the use of a collar (but if you need it, then wear it). Reason being, over time, a collar will weaken the neck muscles. This can worsen any preexisting instability.
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Jeff Jun 1
Replying to @shilla
The Aspen Vista collar is usually considered the most comfortable. It's adjustable, too. You'll want to be sure to buy the correct size for you.
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Daisy Jun 1
Do you think there will be a shift in power? Patients are becoming so much more educated and have access to not only research, but also each other's experiences. My dream is that it will force doctors off their high horse a bit, to have to listen more.
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It'sME(Jaime) Jun 1
I spent a long time trying to write a clever and articulate reply to this, but all I can say is that 90% of the doctors I've spoken to are so arrogant that they cannot accept the idea of their patients being equal partners. I have to think it's a learned behavior.
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Jeff May 31
Thanks, Sharon! I'll include this on my FAQ page, tonight.
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Karen Scott May 31
Replying to @jenbrea
Also viral onset at 23! I can’t believe that for almost 30 yrs CCI/AAI was missed as a diagnosis. In hindsight it was so obvious. What a waste (half-life) I had from 23 til now (52 in July). I’m not angry but I am determined it’s considered as a possibility in others!
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Karen Scott May 30
I feel humbled by all those who helped me get the surgery and have a heart full of joy and a head that finally believes I’m not about to die. It feels like a miracle after so long of feeling horrendous. 😍
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Karen Scott May 30
- Full cervical fusion May 2nd. Now able to walk! (Has sound.) Arrived home yesterday. Need to shorten cane as need to keep shoulder down. Also need to wear more supportive shoes for ankles. 😍
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