May 2010


When you go to medical appointments, have tests, or have an emergency, it is very helpful to have a concise document (1-4 pages of info fits 2 easy-to-read double-sided pages) with the most pertinent information that is needed by care providers. Not only does it save time for intake interviews and filling out forms, but it reduces errors and omissions. When carried consistently, it also ensures that emergency staff have the essential information they need, even if an individual is not able to communicate or think clearly (due to unconsciousness or an acute crisis). Medical staff may copy the information pages, insert them in files, or use them to update electronic records. A 14 point font, and the use of bold and/underlined text help draw attention to items of critical importance, such as medication allergies.

The Basics:

Personal details (name, address, date of birth, sex, telephone number, emergency contacts), insurance info, basic medical background (e.g. including bilateral deafness from NF2, multiple brain and spinal tumors, implants/shunts with special instructions for surgery or imaging, allergies, current medications and dosing schedule; specialized info pertaining to seizures/organs/diet/communication access/mobility impairments, “brief surgical history list on reverse side” that lists date, type/brief description, surgeon, hospital, location), and sheet listing main doctors’ and surgeons’ roles and contact info. and admitting hospitals.

* suggestions and examples shared by Dorothy B., Jennette B. and Karen B. were of assistance in developing my document template. Email me for a copy you may use to fill in your own information.

Be sure to update and keep information current!

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.

I surprised Mom, and myself, with a visit today, and ended up embarking on a surprise treasure hunt. She wanted LJS for dinner. (I’m happy to do whatever I can when I can for her–well, for anyone, really.) No coupons were located prior to setting me Saturn to northern coordinates, but her stomach was set. “Just get the Treasure Chest,” she directed.

I sailed fearlessly. Swift, yet mindfully.

I entered LJS, and happened to be looking around enough to notice an ad with several coupons torn out. It had been left (for me?!) on the divider between the entranceway and the seating area. The Treasure chest/family feast (8 fish, 2 sides, and 50 hushpuppies) for $12.99 remained, so I immediately checked the expiration date (and then double-checked the date on my mobile). Whew–last day to redeem. I confidently collected the coupon and proceeded to order and pay. A smooth transaction ensued (aside from a few attempts to sell me beverages, desserts, and more hushpuppies). I sat on the bench, with my order placard displayed, while waiting for the vittles. It was just enough time to notice a man and two children enjoying a meal at the booth next to the exit, and to message Mom that I saw the sign outside for $1 Baja Fish Tacos as I walked in, and ordered those instead. (She is far from a southwestern cuisine afficionado, and I must have been too nice, because she didn’t even flinch before responding, “Ok.” As the Subject, no less!)

Great service, seeing the kids, the timing of the coupon discovery, and anticipation of swiping some crunchies inspired me to ring the bell on my way out the door.

See what transpires when you look around?

*Energy* plus Flow equals synthesis of inputs and generation of life-enriching outputs.

A bit of everything is contributing.