I was never one to attribute every ache, pain, or setback to neurofibromatosis type 2 (NF2). At the same time, until follow-up time elapses after an emergency event, primary disorder manifestations (lesions, scar tissue, swelling, increased intracranial pressure) should not be assumed to arise independently because premature assumptions may lead to inadequate attention to tracking changes that condition treatment decisions.

When I read, I simultaneously have an eye for material and conditions that apply to me and my situation (past, present, and future) specifically, as well as how information, concepts, and principles may apply generally. When it comes to something as variable and context-driven as NF2, I employ the same strategy in writing: trying to be as useful as possible in the context of an individual situation, erring on the side of reinforcing what my friend may already know, and adding general strategies and information to aid others. Take what is helpful, customize it, and leave what does not apply (or store it in the back, perhaps to use down the road).

In response to “at least it is not NF2” [caveat: information offered informally, from memory, all disclaimers apply, but I am happy to help identify primary references and experiential illustrations]:

I am full of positive energy, while simultaneously grounded in the systemic realities of NF2. I hope he is not alone until he is assuredly stable. I am personally guarded here, and a bit concerned about his hyper-phasia and personality changes/behavior that his friends mentioned in an exchange with another friend. I am all for taking things moment by moment. Sometimes we do not make the connections as events occur, but I have seen and experienced many longer-term, yet within months’/few years’ time, consequences of what seemed like minor falls or accidents. I do not know what his intracranial tumor load is, but many people with NF2 have multiple meningiomas in addition to vestibular schwannomas. (“Kissing tumors,” meningioma neighboring VS, are common, and some of us have en plaque meningioma that line nearly the whole skull–I think my surgeon used the term convexity meningioma when he removed a large, vascular, patch of lesions covering over a full quadrant of my brain.) These tumors are usually considered as slow-growing, and are just followed in serial MRIs, with extra attention when symptoms and/or structural encroachment tilt the equation so that treatment benefits outweigh risks. Many of us impressively adapt to even very large tumors, as long as the changes are gradual. But extreme rapid meningioma growth in individuals with NF2 is not as rare as many sources claim. We need to pay attention to our bodies. A fall or change in balance and perception may itself be a _symptom_ of scar tissue or a tumor approaching a threshold in the way it is affecting the brain/body, and then that manifests in other symptoms like poorer balance, more and more frequent falls, seizures, weakness, pain/headaches, changes in appetite, uncharacteristic moods and behavior, motor, and cognitive changes–depending on the area/s affected. Minor falls and the like may then trigger actual brain swelling or rapid tumor growth. [There are several theories to reflect this sort of delayed-reaction or cumulative model.]

My conscience directed me to keep you and others aware of these possibilities. I also recommend for everyone with NF2 to have a big-picture neurosurgeon who can match scans and tests with everyday presentation, and is always kept in the loop. Document, document, document as anything occurs, in case it is necessary to connect more dots.

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