Brain rehabilitation after surgery
August 5, 2018 11:43 PM   Subscribe

So I have a meningioma, basically sitting at my third eye. Overachiever that I am, it is "huge," and my doctor said they can't explain why I'm still walking and talking. My upcoming craniotomy is the deluxe version, but I look forward to the removal of my brain slug, and I've read the very funny Everywhereist to help get prepared. My surgery is soon, but I would be so happy to hear ideas about how to rehabilitate my brain afterwards, and ideas on how to adapt to the loss of my sense of smell and taste.
posted by Little Dawn to Health & Fitness (6 answers total) 7 users marked this as a favorite
Best answer: The best thing you can do is find a care team you trust to give you targeted rehabilative excercises.

Identify which rehabilitation facility you like in your insurance network, for inpatient therapy and some outpatient programs for continued follow up after discharge.

And remember: the best excersizes are those you do.
posted by AlexiaSky at 4:15 AM on August 6, 2018 [2 favorites]

Best answer: I was diagnosed with three meningiomas in 2007 (little ones) and had surgery to remove two of them. The third was in a very different location, and I've opted for watchful waiting on that one.

You seem to be assuming that you'll lose your senses of smell and taste, and I'm not sure why - perhaps your surgeon told you to expect that. Brain surgery experiences are vastly different - some of the things on the Everywhereist article you linked to applied to me and some did not. The only big long-term side effect I had was smell hallucinations - these went on for years and were annoying (never pleasant smells - mostly very chemical) and led to me ruining an iron because I assumed the burning plastic I smelled was not real. Susz Becker, who wrote I Had Brain Surgery, What's Your Excuse, had problems with language that her neurosurgeon said were completely unpredictable (they eventually resolved). I had no language problems at all. (You might like the Becker book - it's very funny.) I had double vision for the first day only (one of my tumors was touching the optic nerve - really, it's location, location, location).

I opted for extensive neuropsychological testing (an 8-hour session!) before the surgery to get a baseline, but I never got retested because I just really had no major problems (except the smell thing). Brains are fricking amazing in their ability to heal. I recommend The Brain That Changes Itself for info on that.
posted by FencingGal at 6:54 AM on August 6, 2018 [3 favorites]

Best answer: Hey, no answer here, but I wish you the best of luck! I love how you filled your question post with lots of informative links- I learned something about meningiomas today, so thanks for sharing.
posted by Secretariat at 7:51 AM on August 6, 2018 [5 favorites]

Response by poster: Thank you, everyone! I've started occupational therapy and the suggested brain exercises include Luminosity for 20 minutes a day, and games like sudoku and crossword puzzles.
posted by Little Dawn at 12:40 PM on September 10, 2018

Best answer: My diagnosis is pending between meningioma and schwannoma but the prior is most likely, and posts like this are great to find. Hope all went well, Little Dawn!
posted by moonbird at 7:42 PM on March 18, 2019 [1 favorite]

Response by poster: Thank you, moonbird, and I hope all is well with you!

As an update, two books that have been interesting for me to review since my surgery are The Concussion Repair Manual, by Dr. Dan Engle, and the Mild Traumatic Brain Injury Workbook, by Douglas Mason, Psy.D.

The title "Concussion Repair Manual" is a bit of a misnomer, because it is more about traumatic brain injuries generally, and it is written by a neuropsychiatrist who went through his own healing process with his own traumatic brain injury. I have found it helpful for asking questions and guiding my medical care, and because it has a very positive message about recovery. One of the most challenging aspects of my healing process is that there is no doctor in charge of my care, so I'll sometimes bring the book to medical appointments to help articulate my questions and requests for referrals, because the recovery can be complex, and everyone is unique, and I'm certainly not a doctor.

The book has helped me be more proactive with my medical care, and it turned out that after I was hospitalized for seizures, I had already lined up the neurology appointment that the hospital was then telling me to urgently schedule. I had wanted to know more about what 'gliosis' meant after a routine MRI, and it turns out it means 'risk of seizures,' according to the lovely endocrinologist I went to after the book suggested endocrinology is an often-missed component of TBI recovery. But my anti-seizure meds have been working, and the endocrinologist explained why, so I feel very blessed for a lot of the medical care I've recieved, even though it often feels like herding cats.

The Mild Traumatic Brain Injury Workbook is more interactive, and unfortunately assumes there is a doctor in charge of coordinating medical care, but it includes various exercises that my occupational therapist first shared with me, which is why I got the book. I started working on it (with my OT's approval) and was all stoked about it, but then found the exercises harder than expected (unlike my success with Lumosity) and put it away for awhile, but I plan to get refocused on it.

So to answer my own question, in addition to Lumosity, my brain rehabilitation has included:

- neurosurgeon
- neuro-ophthalmologist
- neuropsychologist
- neurologist
- mental health therapist (LCSW)
- psychiatric RN consult
- occupational therapist
- speech therapist
- physical therapist
- physiatrist
- cardiologist
- nephrologist
- endocrinologist
- ophthalmologist
- a positive attitude

My healing from brain surgery has been a holistic process, including because my blood pressure got thrown out of whack for a long time, although it has finally settled down after a medication cocktail finally worked, even though it makes me tired. It's been hard to sort out what can be attributed to the brain injury, and what's due to the blood pressure medication, and I'm still not sure at this point.

Also, I've fortunately not lost my sense of taste (that concern was based on a friend's freakout, not a doctor's warning), but adapting to the loss of a sense of smell has been challenging, and it means I cannot leave the kitchen when cooking, must always have a working smoke detector, and I've been learning how to use my sense of taste to 'smell,' basically by inhaling through my mouth.

Even though I'm bootstrapping my recovery, I remain hopeful about my progress, although another challenging aspect has been accepting that my brain is different now. Previously, I became so frustrated with being told I couldn't work yet, I nearly broke Metafilter with the size of the US Politics threads I was drafting in defiance of that restriction, so I'm very much still in process in trying to find my way through this. Lately, I've had to take it easier, although more recently, I've been inspired to start painting again.
posted by Little Dawn at 12:01 AM on May 23, 2019 [1 favorite]

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