This is a disclaimer

Jennifer Brea
Feb 21 · 2 min read

Hi there! I’m going to be writing a series of posts re: the outcomes of my craniocervical fusion and tethered cord surgeries as well as related topics. They are going to be shorter than usual because at this stage, writing long-form feels beyond me. They will come in fits and starts because some days and weeks are better than others. Expect the full story to emerge slowly, over the next twelve months, mostly because I have no idea how this story ends! (That’s how long it takes to see the full benefit (or not) of these surgeries.)

I just want to make clear for anyone who didn’t read my first post, “A New Diagnosis to Add to the List,” that I am not promoting surgery as a cure-all or recommending that anyone run out and get surgery. Far from it. The decision to have surgery should be a process of testing, diagnosis, second opinions, and deliberation, made in consultation with ideally more than one doctor, and with full and complete understanding of the risks, which any good surgeon will inform you of. Moreover, there is no systematic evidence that if you have both CCI and ME, as I did, that a fusion will resolve your ME symptoms.

What I do believe is in the importance of getting diagnosed with every diagnosis that is accurate to you as it can open new treatment options. If treatment is not available due to the country you live in or the health or health coverage you have, then it might give you new strains of research to follow as well as help to prevent iatrogenic harm. For example, knowing you have MCAS or anti-acetylcholine receptor autoimmunity might give you more information re: what medications to avoid. Knowing that you have craniocervical instability means that whether working with a chiropractor, or physical therapist, or undergoing anesthesia for a completely different procedure, you can warn healthcare providers how important it is to protect your neck.

If you have a diagnosis for which surgery is one of the available treatment options, again, I think it’s worth getting multiple opinions. If you are not so severe as to be in a state of emergency (as I believe I was when I was diagnosed), do try all the more conservative management and treatment options you can and that your doctor recommends before deciding whether surgery is right for you. Your response to these treatments will only give you more confidence in your choice whether you opt not to have surgery, to delay, or to go forward with the surgeon of your choice.

I have no axe to grind, no pet theories to promote (or if I do, it’s probably about four to six different favorite but totally contradictory theories!), and I’m definitely not getting paid for this…or the vast majority of work that I do.

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    Jennifer Brea

    Written by

    Wife of @owasow. Maker of @unrestfilm. Plotter of revolution @MEActNet.