Treatment Journey

The Long Journey Here | Neurosurgery

Finding care for superficial siderosis patients moves in slow motion—the time spent searching for a diagnosis—next, searching for information. In May of 2015, while we were still in an early stage of information gathering after Gary’s diagnosis, I created this website with just an inkling of what was ahead. As I recorded our experiences, an unmistakable post-diagnosis plan began to take shape. Little did I know, it would take years to finish the long journey here.

It has been almost seven years since a radiologist confirmed Gary’s unexplained symptoms due to a little-known disorder called superficial siderosis. In the blink of an eye, these years have passed, reading, learning, writing, and more reading. I ask a lot of questions, and sometimes the answers change. Research is fluid, so yes, advice may go through changes as new information is learned. But we need to stay nimble.

The post-diagnosis steps are now clear. 

  • Confirm the diagnosis
  • Determine if an active bleed exists
  • Locate the bleed
  • Repair the bleed
  • Decide if you want to attempt chelation 

Since the beginning, the readers who have been with us know Gary decided to begin chelation before he even had a neurologist. Every year that passed, annual MRI, and new specialist, our question was always the same. When can we convince you his bleed needs to be located and repaired? 

Gary began care under his second neurologist in 2017. I begged him to refer Gary to neurosurgery. Could they, at the very least, take a look? On the trip home from Little Rock, the neuropsychologist told me that the neurosurgery department had refused the referral. The note stated they felt his condition needed to decline before they tried a surgical intervention. Every published report contradicted their opinion. 

The following two years were a rollercoaster of new problems. Hearing, swallowing, headaches, a heart rate that was either galloping at the speed of light or so slow molasses could drip faster. His neurologist admitted he could offer no options other than referral after referral to another specialty. When your neurologist says there is nothing to do, they are very wrong. You find a new neurologist.

Gary transferred his care from Little Rock, AR, to a neurologist in Shreveport, LA. From the jump, she was honest; she understood little to nothing about superficial siderosis. It was 2019. I was no longer afraid to speak up or hold an impromptu SS education session. I was polite but firm. I wanted Gary to have a referral to neurosurgery. 

Fate has a strange way of correcting the errors of the universe. A few months later, Gary and I were sitting in this new neurosurgeons’ office. At the same time, a resident went through a series of questions. As she left the room, she said Dr. Willis would be joining us shortly. Gary asked Dr. Brian Willis? His neurosurgeon in Louisiana was the very neurosurgeon who diagnosed him in 2014 in Texas. Dr. Willis recognized the diagnosis before he recognized Gary. The physical change Gary had undergone during the past five years was striking. Dr. Willis was visibly shocked. It took less than 30 minutes of chatting before he agreed to review Gary’s records. We left the office with a plan to locate Gary’s bleed and, if it was possible, repair the dural defect. Before we left, Gary asked if Dr. Willis had ever run across another case of superficial siderosis? In the five years since Gary and 39 years of practice, the answer was still no.

Gary receives his healthcare through the VA system. Dr. Willis wanted the surgery done at Oschner LSU Hospital, so Gary needed approval from outside providers. The long waited for CT Myelogram to locate his bleed. New MRIs and multiple reviews of his records. All were requiring an outside provider approval. Gary’s surgery was so close. We went for a final appointment in late January 2020 before scheduling. Then COVID-19 arrived.

While the coronavirus was slow to arrive in East Texas, it burst into Shreveport, LA, right after Mardi Gras. If you looked at a map during that time, it was easy to see outbreaks in every city connected to New Orleans by an airport. Oschner LSU Hospital became one of the early hospitals to treat COVID patients. The hospital notified patients all non-essential surgery was canceled. 

Gary had been so close.

In late December, I began to hear news reports; local hospitals started to allow patients to return for surgery. Dr. Willis contacted us, and we returned to his office in early January. Were we still interested in having Gary’s active leak repaired? The office began the outside provider authorization process, but it was a race, once again, against COVID. A new post-holiday surge was limiting surgeries. The day before our February visit, the other major hospital in Shreveport put non-essential surgery on hiatus. We left with paperwork for Gary’s co-ag clinic requesting bridging instructions. I wasn’t optimistic about his chances.

When the call came, there wasn’t much of a wait. Gary went off his blood thinners and began the bridging process five days before surgery. The procedure was last Thursday on March 18th. Gary heals extremely slow now. During our year-long coronavirus stay-at-home adventure, he took a break from iron chelation. I expect a very long recovery time, but he will restart the chelation therapy once he recovers. We started this journey with hope. We’ll continue knowing we are doing everything we can.

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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. Rori, I would love to talk by phone if you have time. I was diagnosed in Nov with SS. I don’t have an active bleed and Dr Levy is my doctor. My appeal was rejected for Ferriprox so I’m trying to figure out how to get the drug. US? India?

  2. Hello I cannot wait to meet you and Gary.I just started going to the same place Gary does for physical therapy in Tyler TX.  I had my leak fixed and want your opinion on ferriprox.  You can call at anytime Margaret Permenter

    1. Hi Margaret,

      I will give you a call very soon! (I removed your number from your message post). Thank you for reaching out.

  3. Thank you for your writing Rori. I’m part of a CSF leak group on Facebook where someone was just diagnosed with SS and I think I will be too. I appreciate you doing this for people like me and also for the love and care you have for Gary. I hope his healing is going well and look forward to your updates.

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