SoCS: a new wrinkle

I just finished writing up some notes on a problem I had at physical therapy yesterday.

We were trying to tape my upper back/shoulders and inadvertently caused symptoms in my neck and made my tinnitus louder.

We immediately removed the tape but I’m still having some aftereffects today.

We are still looking for a diagnosis that explains all my medical weirdness but we aren’t there yet.

Meanwhile, I appreciate everyone’s graciousness and patience in waiting for my posts to appear. It’s been an intense few weeks, as you might have guessed in that I still haven’t done a post-election entry. I’ll get there eventually.

I’m trying to extend the grace and patience people are showing me to myself. Sometimes, I even manage it…
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Linda’s prompt for Stream of Consciousness Saturday this week is to use the word “just” in the first sentence. Join us! Find out more here: https://lindaghill.com/2024/11/22/the-friday-reminder-and-prompt-for-socs-nov-23-2024/

health update

I thought I’d do a brief update on my health status, despite still being in the middle of the diagnostic swamp.

When I wrote my last update, I had not yet started vestibular therapy or had my hearing test. The hearing test ruled out hearing loss as a cause for the tinnitus. I’ve been making progress with vestibular therapy and my balance is improving, although fatigue or being out in the summer weather aggravates things considerably.

It’s looking increasingly like the basic problem may be in my neck, so I have just begun physical therapy on my neck and we are looking into referrals to specialists who might be able to arrive at a diagnosis.

Meanwhile, I’m continuing to operate at diminished capacity. The tinnitus remains constant. There is still a lot of fatigue and brain fog and some periods of fuzzy vision. The neck pain, headache, and tingling come and go. I have to be careful not to do too much on any particular day and sometimes need naps. I am cutting back on my responsibilities and activities, which is frustrating.

Stay tuned…

grossly unremarkable

Ugh! I’ve been putting off writing a health update post, hoping to get to a more definitive place before sharing but it’s taking long enough that I figured I better try.

Regular readers may recall that I started having trouble with tinnitus on my left side a few months back and wrote more about it on Mother’s Day. An MRI had been scheduled for June 21 with a hearing test to follow the next week.

Unfortunately, I was accumulating more symptoms on my left side, some visual difficulties in my left eye though the eye itself was fine, pressure or headache behind that eye, discomfort on the left side of my neck, intermittent tingling behind my left ear, a tendency to get lightheaded and feel off-balance, fatigue, and difficulty concentrating, perhaps caused by having to divert conscious attention to things like vision and equilibrium that are usually unconscious. I had been to my primary care provider several times but they needed the information from the MRI before we could proceed further, so the plan was that, if my symptoms worsened, I would go to the emergency room at our local hospital.

In early June, things did get worse. The most alarming part was that the tingling on the side of my head started spreading into my face and toward my neck and became almost constant. I also was having increased problems with my thought processes slowing down as I spent more and more brainpower remembering to move my head and body slowly so that I could keep my balance.

So, B took me to the hospital emergency department, arriving a bit before 9 AM. It was very busy, partially a result (we found out later) of difficulties at a neighboring hospital due to a cyber attack. It was so busy that I spent the first six hours based in the waiting room, going out for various tests and then being returned there. They did a brain CT relatively quickly to make sure I wasn’t having a stroke or some other acute thing. The results came back as “grossly normal” with some aspects being labelled as “grossly unremarkable,” which quickly became a favorite phrase for me, thus, the title of this post.

The waiting room became so crowded that they asked non-patients to leave shortly before noon, unless they were needed for patient care, such as parents of children or people who were acting as translators. So, B had to leave me; he waited at the hospital for most of the afternoon but eventually headed for home.

Mid-afternoon, there was finally a space in the treatment area for me, albeit on a gurney in the hallway, and the decision was made that I needed an MRI – which I already knew because I had one scheduled – but it was too late in the day to fit me in. I got to eat supper and eventually was moved to a room with hospital beds where several of us were on observation for the night.

Or so I thought.

Around 3 AM, I was moved upstairs to a unit that houses neurology patients. Somehow, they seemed to have missed all the stuff that happened in the ER and I had to prove to them that I wasn’t having a stroke all over again. I did have the MRI with contrast in the morning, which also proved to be grossly normal. This was, of course, good news in that it ruled out any tumors in my brain or sinuses, as well as other brain diseases or strokes. However, it didn’t tell us what was causing my symptoms.

The most useful thing that happened was a consultation with physical therapy. Dianne detected that my eyes weren’t tracking as well as they should be. She also did an evaluation for inner ear problems, where crystals in the inner ear loosen and migrate and cause eye and balance symptoms. While I don’t have the most common form of benign paroxysmal positional vertigo, I may have a variation of it with the crystals in a different part of the inner ear canal affected.

The maneuvers that Dianne did with my head and neck during the evaluation did help relieve some of my symptoms. The constant discomfort on the left side of my neck went away and I could move my head more easily. The tingling on the side of my head, which by then was constant, disappeared. Dianne recommended that I see a physical therapist who specializes in vestibular therapy and I have an appointment scheduled for next week. She also gave me an eye exercise to do at home in the meantime and some tips on posture. Additionally, a neck X-ray revealed some arthritis, which will be useful knowledge for the physical therapist.

I was discharged from the hospital that evening. There are supposed to be appointments for follow-up with a neurologist and a referral to an ear, nose, and throat specialist but I haven’t heard when those will be. The tinnitus is still constant and I may or may not have answers about that from my hearing test next week.

Over these last couple of weeks since my hospital visit, the severity of symptoms overall has been creeping higher. The current heat dome that is parked over us here in the Northeast US hasn’t been helpful; I’ve been feeling worse despite staying in our geothermal-heat-pump-cooled home as much as possible.

I’m looking forward to my vestibular therapy appointment on Wednesday, hoping that their experience will make more sense of my situation and maybe even arrive at a diagnosis that will explain some of my symptoms. It’s possible that there is more than one condition going on. For example, the tinnitus could have a cause not related to the possible inner ear issue.

Meanwhile, I’ve had to clear most of my usual activities from my schedule. My lack of concentration is making reading and writing more challenging, which is a shame, given that that is what I usually spend most of my time doing. I will try to do a quick update late next week after my vestibular therapy appointment and hearing test.

Hoping for some good news to share.

Other than being grossly unremarkable.

(a different) Mother’s Day

In the US, we are observing Mother’s Day today. While its origin was in a call for peace after the Civil War, today it is celebrated as a tribute to mothers of all types and ages.

Since the death of my mother in May, 2019, Mother’s Day has felt bittersweet to me, as it brings back that time when, within two May weeks, there was my mom’s last Mother’s Day, birthday, and the date of her death. It’s complicated further by having daughter E and granddaughters ABC and JG five time zones away.

This year has brought the additional worry of a family member’s upcoming surgery and the possibility of an underlying disorder yet to be diagnosed.

Then, there is the general upheaval in the US and so many other places in the world, war, hunger, the climate crisis, disasters, and I will end the list here, but we know it is much longer.

It’s a lot with which to contend and I’m not coping very well.

I mentioned in a Stream of Consciousness Saturday post in mid-April that I was hearing a sound in my left ear. This, along with some additional symptoms, has led to several primary care visits, a diagnosis of tinnitus, some attempts at treatment, and, on Friday, a decision to order an MRI to rule out various tumors or other abnormalities.

Of course, there is the possibility of not “ruling out” but discovering.

I admit that I’m struggling. I’m practiced with blocking things out or setting them aside to concentrate on caring for family members. Part of my problem right now is that the timing is unfortunate as I am the main driver and errand-runner and don’t want to be out of commission when I’m needed to help with surgical recovery and follow-on medical appointments. I know spouse B will drop everything at work to take care of things but I also know that his project is in a critical phase right now.

I need humility, trust, and the grace to step aside and let others take over the work I should or have been doing and put other things aside for a while, but it’s hard and I’m worried and tired.

Maybe they will examine my head and not find anything.

Wait. That doesn’t sound right.

Maybe they won’t find anything dangerous.

Maybe, I can get a grip when the MRI is actually scheduled and on my calendar. After all, this is not my first rodeo with medical mystery ailments. Some of them have even been mine. I’m just more annoyed with my own. I know I need to channel some of the compassion I have toward others and apply it to myself.

And maybe take a nap.

It’s been helpful to write this down. I am questioning whether or not it is wise to post it, but have decided to do so because authenticity is part of the charm? hallmark? conceit? of Top of JC’s Mind.

And, yes, it’s Mother’s Day and B is making lamb spiedies and grilled asparagus with his homemade tiramisu for dessert.

And there have been sweet cards and a present.

And the lilies of the valley are starting to bloom.

They were my mother’s birth flower and a favorite of hers.

The photo is from my mother’s 87th and last birthday, lilies of the valley from our yard and cards from my father and their artist-friend Jim.

Miss you today, Mom.

SoCS: sound

I have a sound in my head.

Well, maybe just in my left ear.

I was hearing a thrumming sound and I thought it was from wall vibrations from our radon removal system but that is fixed now and the sound is still there.

If it doesn’t resolve soon, I’ll contact my doctor…
*****
Linda’s prompt for Stream of Consciousness Saturday this week is to use a word that ends with “ound.” Join us! Find out more here: https://lindaghill.com/2024/04/12/the-friday-reminder-and-prompt-for-socs-april-13-2024/