Treatment Journey

Radio Silence

Radio Silence

You may have noticed the silence of late. Life becomes busy and complicated. Sometimes you need to step back for a minute. Social media, vegetable harvest, and chicken season. Did I mention all the new doctors? Trips to the emergency room, ultrasounds, CT scans, x-rays, and biopsies. Radio silence.

Taking a breath from the chaos

It began innocently. We live in a rural area and depend on a satellite to connect to our cyber world. An angry spring storm season continually wreaked havoc, making website updating an exercise in frustration. Maybe a sign to take a little break from social media? Thirty days of Facebook free. I missed the rainbows and smiles, but I think I preferred the days when I didn’t know all casual acquaintances’ most deep-seated darkest opinions. 

The changes in Gary since spring have been unsettling. His balance problems think they’re being featured on an episode of roller coasters gone wild. The sound of his falling has become too familiar now. He wanted to help with the chickens but fell inside our shed onto our lawn aerator. If you’re not familiar with an aerator, it’s a wide metal tube covered with spikes you drag around your lawn to poke holes in the ground. Unfortunately, I can report with certainty it will also poke holes in a person. Emergency room and x-rays- you know the drill.

His physical therapist noticed his speech was sluggish and slurred after this particular fall. Did you hit your head? No, not this time. Well, ok then. It resolved on its own after a week. Check another box on things to watch. 

Physical therapy was nice while it lasted. Gary was evaluated after 60 days, and it was determined his balance was worse than when they began therapy. Recommendation? He should not be walking outside alone. His two-walking pole system was no longer enough. They could not help with a neurologically based condition. The hits they keep on a-coming.

Close To Home

We traveled to Little Rock for a quarterly neurology check. Finally, a decision was made to transfer care to Louisiana. Their parting advice? Gary needed to put away the cane and use his walker 100% of the time. Wonderful. Now I need to learn how to make this happen. Gary is determined and stubborn. Our postman actually pulled into our yard and followed him into the shop the other day. He had seen his drunken sailor sideways gait across the yard and was worried he was dehydrated from the heat. Thanks for your concern (really- thank you!), but this is how Gary moves now. It gives a whole new meaning to walk, drop, and roll. 

It’s getting loud up in here

Patient supposedly has iron deposited in brain and optic nerves”

-VA Ophthalmologist

We saw a new ophthalmologist. When you’re in the VA healthcare system, you very often see whomever when your appointment time arrives. It wasn’t a well-received visit. This doctor was condescending and dismissive. Supposedly iron deposits? Ever try reading a patient’s records? Your nystagmus, nope- doesn’t seem too bad. Nothing to worry about. Really? That’s not the same opinion of two other ophthalmologists, three neurologists, a score of testing technicians, and the patient. “Follow-up Ocular Coherence Tomography of Retina, Optic Nerve performed on Both Eyes today. Comments: NYSTAGMUS MAKES DIFFICULT TO DO OCT has Horizontal down beating and rotational nystagmus, no vertical nystagmus.” 

I’m pleased to report no doctors were harmed during this appointment. Gary did get an updated prescription and is very happy with his new glasses. He still has prism lenses, plus he went to a larger diameter. His reading ability has improved a bit with the size increase. Unfortunately, the close-captioning on the television still rolls at an annoyingly constant rate.

When there are no words

This was our April and May. Radio silence just seemed the better way. June arrived and a referral for a completely non-superficial siderosis related problem. During Gary’s visit with his primary care doctor, he mentioned he felt a lump on his throat. that had just appeared in the last few months. His PCP felt around and commented it was normal- just the cartilage in the throat. Nothing to be concerned with. I reminded her of his history of thyroid nodules. Gary mumbled something about being sixty years old, and the lump was never there before.

Skip to June. Ultrasounds become CT scans become visits to an endocrinologist who schedules biopsies for July. Will this guy never catch a break?  Finally, a bit of good news: a date for a follow-up with the neurosurgeon. Six months with no word, but there are so many administrative hoops to jump for approval. Gary is to be sent out of the VA to a private neurosurgical group. His case was presented to a surgical committee, and they have APPROVED a procedure to close his suspected bleed.

The only question now is they will perform a traditional invasive type surgery that will require a drain in the lower back or try to repair using the services of an interventional neuroradiology specialist. We will learn which procedure they plan on when we are given a surgery date. The better option is interventional neuroradiology. We were told it’s less invasive than traditional surgeries, so less stress on the body, but the question remains will it be successful?

Silence is calming but it’s all good now so bring on the noise.

It’s time to break the silence and return to work. If you haven’t noticed, the website has been given a bit of a makeover. The words are flowing once again, and several new projects are rolling around.

Oh, by the way, Gary was notified yesterday both biopsies came back benign. 

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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

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  1. I can’t wait to see your brand new website. For sure it’s going to be exciting. Please add some images to add extra touch of your website.

  2. Sorry to hear of Gary falling so much, I much prefer the rollator or cane, haven’t fallen since 11/4/16 and then diagagnosed 9/21-17.
    Not remembering how old Gary is, hopefully he will be on Medicare soon and use VA as secondary .
    God Bless

  3. I didn’t know that Superficial Hemosiderosis can affect vision as well. Something else to look “forward” to?

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