Neurological Reserve

Living With Superficial Siderosis

Saturday morning may have begun at our local community urgent care but it soon turned into a run to the emergency room 65 miles further down the road. Bless my daughter for driving the second leg because the past three weeks have been nonstop blood tests, appointments, and procedures. I’m tired and I know Gary’s feeling the strain. This is living with superficial siderosis.

While Gary’s superficial siderosis isn’t the culprit this time (surgery last week) he never bounces back like healthy folks. He’s always weaker -no longer healing quickly. Strangely, the surgery was textbook smooth and problem free. Yes, too good to be true.

The Long Road To Here

We married while Gary was in the Navy in the late 70’s. To be honest we’ve spent the majority of our lives together. We traveled to Texas from California with two toddlers, a dog, a cat, and everything we owned in an old van. Ready to face the world – always together.

We worked hard, bought a house, then bought a nicer house, and in 1991 opened a restaurant. Gary was working while helping me run our new business when he began complaining of a pain from his neck into his shoulder.

His doctor discovered a walnut sized tumor growing around his spinal cord at the C2-C3 area of his neck. After a five hour surgery he was tumor free but had developed a bubble at the base of his head. Spinal fluid would leak from the surgical site, traveling in and out under his skin. We were assured there was nothing to worry about. Life went on.


2001 brought the onset of horrible headaches. Gary revisited his neurosurgeon for an updated MRI and review of his records. The bubble had developed into pseudomeningocele. The pressure change brought on by the movement of his spinal fluid was the problem.

The first surgery had been so hard Gary made the decision to live with the pain rather than go under again. We should have bought stock in the manufacturer of Tylenol.

Gary made his first visit to an ENT in 2003 for a strange ringing in his ears. His doctor couldn’t pinpoint a reason so Gary left with learn to live with it. This was to become a cycle for the next ten years.

A Never-ending Search For Answers

Every year brought a new mystery symptom and a new parade of doctors. Hospitalization for a very rough episode of rotational vertigo finally led us to ENT number three and a diagnosis of a vestibular disturbance- origin unknown.

The tinnitus was soon joined by hearing loss, weird smells, acid reflux, sleep apnea, and the ever present headaches. The vertigo went dormant but Gary could no longer tolerate the carnival rides I loved. His yearly hearing test just provided a visual reminder of his disturbing downward trend.

In late 2013 our ENT decided his hearing decline was accelerating so a referral to a specialized otolaryngologist was indicated. A decision was made to return to the neurosurgeon for an updated MRI first to rule out another tumor.

The neurosurgeon was honest when he said he had expected to see a new tumor on the MRI. Everything looked fine so we could plan on the trip into Dallas to see the otolaryngologist.

We returned home with a copy of the MRIs and radiologist reports on a CD. Gary being Gary popped it into his laptop and read the reports.

IMPRESSION: Diffusely abnormal decreased signal of the meningeal surfaces more pronounced about the brainstem, cerebellum, and basilar cisterns. There appears to be mild associated cerebellar atrophy. The MR findings, as well as the clinical report of dizziness and hearing loss, are consistent with superficial siderosis. The abnormal decreased signal is observed primarily on the T2-weighted series correlating with the pial and ependymal surfaces most pronounced about the brainstem, basilar cisterns, and cerebellum. Findings correlate with hemosiderin deposition in a pattern of superficial siderosis. Etiology for superficial siderosis is presumed to include episodes of subarachnoid hemorrhage although not always clinically evident. Sensorineural hearing loss and cerebellar findings, by a report, are often presenting symptoms and appear to correlate in this case.

It was early 2014 and a radiologist had our answer.

Gary was still able to work but his vision and balance began to show early signs of what was to come. We began planning for when he would have to leave his job. His employer modified his job duties but by early 2015, flying out-of-state or driving long hours became too unsafe. Gary tendered his resignation with regret.

Our Road Continues

I write today, sitting in yet another ER, waiting on an ambulance to carry Gary to another hospital. We continue to face this long road together because we will always be a part of each other. This is our life living with superficial siderosis.

We’ll continue to face this long road here with all of you too because we understand the frustration, confusion, or helpless feelings you face. No one should face this journey alone.

I still
Believe There Is Hope

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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,


  1. Hi all my partner mri 2018 said extensive superficial side Ross I have asked his gp and a different 1 plus hospital what do I need to know and expect from this as he already has short term memory loss and his balance and walking can be off at times and hearing loss and some times he gets tremors and all they say is it is to do with his treatment of cancer which is all gone and he is in the clear with that which is good but I don’t know what to expect with this sideross thing can anyone help me please thanks to anyone that can help me Shepard some light

    1. Hi Kerry, our Facebook group has several members who live in Australia. I know Fiona will try and answer any questions she can about finding care. She has been under both private care and public care options.If you would like to ask her a question I would be happy to forward your email address to her.

  2. My brother has just received this diagnosis and yet has no hearing loss… Certainly ataxia and some memory issues but it does seem reading online that hearing loss is a primary symptom… Can you recommend any resources to better educate myself on the characteristics of the disease thank you!

  3. I have read that patients with dementia and/or superficial siderosis do not recover as well from surgery. Beside my husband not wanting his peri esophageal hernia surgically fixed, I’m concerned about the outcome of the surgery given his dementia and extensive superficial siderosis. The surgery itself is complicated. The surgeon, of course , thinks it’s a piece of cake. Other GI people have told me that one can have worse problems after the surgery.
    I can’t say that I have a lot of hope at the moment, only wish I knew the timeline for what’s in store for us. I realize that’s different for everyone. Nobody can get the answers we need.
    You are not alone. I hope your husband recovers soon. Traveling so far to see doctors is no fun.

  4. Prayers that all is well with you & Gary. Without my faith there is no way this journey would be tolerable !!!
    Your story is very similar ; I went to so many neurosurgeons thinking I needed surgery on my back, when it was the 2003 surgery on my neck that caused my SS. Finally found out in 2017 and luckily have a wonderful husband .

  5. Thank you for your eloquent writing as always. I am not nearly as far down this SS road as Gary is, but I know that I am getting closer and closer every day. Keeping you all in my prayers.

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