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Jennifer Brea
Filmmaker . Tweets cinema, disability and occasionally screams from bed. Wife of . /
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Jennifer Brea retweeted
Emily Deans MD May 20
Replying to @jenbrea
Autonomic instability should always make us think brain stem, but we seldom do....
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Jennifer Brea retweeted
Jeff 13h
Mattie had a fusion surgery to correct CCI after 3 years of moderate/severe ME. Like and me, Mattie has significantly improved after his fusion! I interviewed him, here:
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Jennifer Brea 4h
Replying to @DrFrancesRyan
Thank you! ❤️
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Jennifer Brea 6h
Of course it is. I'm glad he thinks so!
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Jennifer Brea retweeted
Annemieke de Wit 7h
My daughter is fused C0/T1 and her progress is amazing. She's doing better every day and doesn't meet the criteria of ME anymore. Sure there are some problems and the EDS isn't gone, but she still has her life back
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Jennifer Brea 9h
Wow! Those are my new step goals!
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Jennifer Brea 10h
Lol, thanks. Turns out that’s very important!
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Jennifer Brea 10h
I have always wondered why ’s MCAS resolved with fusion. If his AP was deformed by CCI, could that have been enough to then trigger the entire network of mast cells to be hyperreactive?
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Jennifer Brea retweeted
Michael VanElzakker 10h
AP = area postrema, which is very dense with mast cells NTS = nucleus of solitary tract, where vagus enters brainstem & triggers 'sickness' response DMV = dorsal motor nucleus of vagus, parasympathetic control, important for heart rate changes due to things including posture
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Jennifer Brea 11h
(Which I don't meet the diagnostic criteria for but it's the closest analogy and set of experiences to having ME.)
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Jennifer Brea 11h
I would say, though, that my "second opinion" from many leading institutions would have been conversion disorder, so it's important to consider the surgeon's level of experience with cases like ours and by that I mean, people with hEDS.
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Jennifer Brea 11h
Replying to @nikkiLclinton
So to clarify, that is a quote from Mattie, another ME patient diagnosed with CCI who had this surgery. But I also walk up and down a flight of stairs multiple times a day. And yeah, it's pretty amazing!
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Jennifer Brea 11h
Ask your surgeon re: how many surgeries he gets a year, potential complications, complication rate, prognosis, etc. If you decide to have surgery, having a post-surgical care plan and physical therapy plan are also very important.
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Jennifer Brea 11h
There needs to be much more information out there re: surgery and recovery. Beyond the Measurement is a good resource for this (especially if you search its archives) but yes, it's a big decision. I think just do absolutely as much research as you can, get 2nd opinions, etc.
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Jennifer Brea 11h
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Jennifer Brea 11h
Replying to @leahmcelrath
Hi! It stand for craniocervical instability
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Jennifer Brea 12h
Replying to @jenbrea
"On average, I walk a full flight of stairs about 8-12 times each day. This was not remotely possible prior to my fusion surgery." 😮
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Jennifer Brea 12h
My apologies...I realize my surgeon takes *Medicare*, not Medicaid. But I swear I have seen people in the forums accessing surgery via Medicaid. I will do some investigation.
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Jennifer Brea retweeted
#PwME 4 a Molecular Signature 12h
Replying to @jenbrea @brucegoldman
Jen did you see this article by on a recent Stanford's study, in mice, which found that mast cells secrete a cartilage-degrading enzyme involved in osteoarthritis? Food for thoughts. Congrats on your remission btw.
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Jennifer Brea 12h
Replying to @ValeBodi @brucegoldman
Thanks for this! Yes, I think there are a few different studies linking mast cells to collagen degradation. I will take a look!
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