I’m sure you know this joke: Three neurologists walk into a bar………

No, never heard it. Too bad, it’s a good one.

The punchline is ‘It’s all in your head.’

I’m laughing so hard I’m peeing myself.

Wait, that’s not why I’m peeing myself.

Prologue

“It’s all in your head,” he said, waving a dismissive hand in the air. A hand with long fingers–the fingers of a surgeon; someone who manipulates the delicate threads of neurons.

I’d heard this song before. Over the past seven years it’s been sung to me a multitude of times by varied doctors who are confident my symptoms are ‘in my head.’

Sorry to disappoint but this post won’t be happy and fuzzy, about wild animals or flooding waters, although I do have a cute video for the end.

No, this post is about a journey of 1000 unsteady steps, but, hey, it’s my blog. When you have a blog you can post about anything you want.

Onward.

Enter symptoms: stuttering, dizziness, falling, pins and needles in my fingertips and toes, headaches, incontinence (oh boy, what fun), cognitive fog, shuffling gait, memory blurriness, and a general feeling of who gives a rat’s ass.

In my first MRI from 2015, the radiologist wrote as part of the report:

The lateral ventricles are enlarged out of proportion to the cortical sulci. Of note, the possibility of normal pressure hydrocephalus or aqueductal stenosis should only be considered in the appropriate clinical setting.

At the time I wasn’t told the information and being the poor patient that I was, I took on faith my PCP”s diagnosis that my headaches, inability to collect my thoughts, and my stuttering were the result of anxiety.

Fast forward to 2018. Me in front of my classroom teaching about the human body when I drop the marker. Reaching down to retrieve it I fell forward. A collective gasp from the students and, long story shortened to keep you from dozing off, I ended up in the ER of Melrose Wakefield Hospital.

ER doctor ran tests — CAT scan, blood work, and an MRI. He told me I had had a minor stroke but that I also have an enlarged ventricle and that he was admitting me for observation.

The MRI radiologist wrote:

The ventricles are enlarged.

Enter Dr. Benson who stood at the foot of my hospital bed and told me the MRI was fine. My CAT scan was fine. My blood work was fine. My symptoms were in my head, not literally, though. I should seek psychiatric help for anxiety. He prescribed anti-anxiety medication and sent me on my way.

My students had driven my car to the hospital. Dr. Benson discharged me and allowed me to drive myself home (while under the influence of a potent drug–man the world was spinning). I do remember driving to McDonald’s for something to eat and hitting the drive-thru barrier, crumpling the front bumper of my car. I don’t remember what I ordered.

Later in 2018 and another neurologist and another MRI:

Findings: The ventricles are enlarged as on preceding exam from 2015. Given the normal size of sulci and cisterns this raises the possibility of communicating hydrocephalus or normal pressure~hydrocephalus.

I was told I needed a psychiatrist, the my MRI was clean. ‘It’s all in your head,’ Dr. Blank said.

So, I went to see a psychiatrist and received a neuropsych evaluation. The results, my symptoms are organic, not ‘in my head.’

Enter Dr. Ho at Tufts Medical Center who finally performed a Lumbar Puncture. That was Friday, August 24, 2018. Come Saturday morning I was back to normal. No stuttering, no tremors, no gait disturbance, no incontinence, no neuropathy. I called my sister and we laughed and cried with joy.

Come Sunday the symptoms slowly returned. That time when I cried it was due to frustration.

Enter a neurosurgeon who looked at my symptoms, the MRI’s ,and the Lumbar Puncture results, and told me he wasn’t convinced I had NPH but if I did have it he wouldn’t install a shunt.

‘Come back when you’re in a wheelchair,’ he told me.

2023

My symptoms have returned with a vengeance. The stuttering, incontinence, gait issues, falling, pins and needles in my fingertips and toes, cognitive fog, headaches–the whole basket of squirmy, wormy symptoms supposedly ‘in my head.’

New MRI:

There are few scattered subcortical and periventricular white matter
T2 FLAIR hyperintensity seen within the cerebral hemispheres, which
are nonspecific and may be seen the setting of chronic small vessel
disease.
–
There is unchanged supratentorial ventriculomegaly dating back to
2015, out of proportion to the degree of sulcal prominence which may
related to the patient’s reported history of normal pressure
hydrocephalus. 

Enter Dr. Matthew Gold. ‘You’re a nervous woman and need therapy.’

WTF!!!

New neurosurgeon. ‘You need therapy.’

Well, I guess I need therapy. I’ve put in a call to Brigham and Women’s Hospital’s department of Neuropsychiatry to hopefully schedule an appointment. In the meantime I’ll keep wearing my diapers, using my walker, sitting on my couch when I would rather be out walking and playing with my dogs and gardening, and take my anti-anxiety medication (which, by the way, does not alleviate the symptoms.) and munch on Tylenol for my headaches.

Yup, it’s all in my head.

Blessed be :{

Oh, here’s the cute video I promised you. Thanks for reading my story and, no, I did not proofread it. I have a headache.

Mi manchi, mia amata immortale.