When Neurology Has No Answers: My Journey Through the Maze of Superficial Siderosis

When Neurology Has No Answers

Hello, dear readers and fellow warriors in the battle against Superficial Siderosis (SS). My name is Bena Travis, and I’m here to share my odyssey—a tale of resilience, frustration, and hope. I’m a 62-year-old retired florist and wedding planner, living the dream with my husband in the picturesque lakes of Western Kentucky. We’re boating enthusiasts and Monarch butterfly conservationists. Despite the maze of superficial siderosis, I strive to live each day to the fullest. But let’s rewind a bit and peek into how I got here.

The Unfolding Mystery of My SS Diagnosis

My SS journey began with a ventral spinal cerebrospinal fluid leak at thoracic level T-4. A bone spur at that level punctured my Dural lining, causing a mix of spinal fluid and blood to disperse throughout my body. I suspect this had been happening for nearly a decade. I also suffer from Mal de Debarquement syndrome, so balance issues were nothing new. After reviewing my scans, this neurosurgeon knew enough to identify the SS but would not see me again; he said he did not treat SS. He referred me to the head of neurology at the University of Louisville, who didn’t know much about SS or why I had it. He told me to go home, live my best life, and have a repeat scan locally in a year. By that year point, I was feeling worse with severe headachesOverview It is challenging to pinpoint the exact cause of su... More and even worse balance issues.

Just Live with It? Really?

I tried to get that yearly repeat MRI scan from the local neurosurgeon who initially diagnosed my SS. He refused to order the MRI for me, repeating he didn’t treat SS. I called the neurologist at the University of Louisville again, but he only ordered an MRA this time. I returned to him in January 2020, but by then, he knew less about SS than I did! He told me not to worry about it, although I knew I was losing ground fast and needed help. I left his office furious and resolved to find answers myself.; I had no one in Kentucky to help me.

A Ray of Hope: The SS Community

I joined a Superficial Siderosis Facebook group and received invaluable advice. The members suspected I had a CSF leak—something none of my previous doctors had considered. The challenge now was to find a specialist who could help. The challenge now was to find a specialist who could help. My insurance wanted me to stay in my home state, and there wasn’t one who had a clue about superficial siderosis, CSF leaks, or the possible relation between the two.

The Breakthrough: Specialists to the Rescue

I contacted Dr. Michael Levy at Massachusetts General Hospital and Dr. Neeraj Kumar at the Mayo Clinic. I chose Dr. Kumar because the Mayo Clinic is considered one of the best when neurosurgery is required. He confirmed my SS and identified the location of my leak. His words resonated deeply: “What the mind doesn’t know, the mouth can’t speak.”

Mayo Clinic

I sent my 2018 MRI scans, clinical notes, and a letter explaining my symptoms to Dr. Kumar. He agreed to take my case. In July 2020, we were right amid the Covid pandemic, so we had a Zoom appointment. Dr. Kumar was awesome. After listening to me tell my story, he said, “Now let me tell you what I know about you from your scans.” He confirmed my SS, identified intracranial hypotensionOverview Craniospinal Hypotension, also known as Intracrania... More, and found my leak on those 2018 scans. I asked him why my local neurosurgeon or the two University of Louisville neurosurgeons didn’t see a leak. He replied, “Ms. Bena, not many doctors out there understand SS, what might cause it, or can identify the leaks. Simply put, what the mind doesn’t know, the mouth can’t speak”. Those were some profound words for me after my search for many years, especially the past two years.

The Battle with Insurance

An appointment was scheduled for the entire spine and head MRIs and a consultation with Dr. Atkinson, a Mayo neurosurgeon.   The fight with my insurance began with my appointment in just two weeks. I sent the letter from Dr. Levy and Dr. Kumar’s clinical notes. I finally got approved for the MRIs at Mayo just in time for my appointment! I pay just over 1000.00 a month for my insurance and must fight for every bit of care I receive, partly because they have never heard of SS or CFS leaks.

I arrived at Mayo Clinic (a 14-hour drive) on July 26, 2020, and the testing began. Insurance would only approve me for the MRIs and neurosurgical consult. I saw Dr. Atkinson the day after my whole spine and head MRIs were done. He confirmed that I had a moderate case of SS, intracranial hypotension, brain sag, and a big spinal leak. Still, because I had so much spinal fluid displaced, I would need a dynamic CT myelogram to pinpoint the exact location of the leak. Back home, I came until we could get my insurance to approve that test.

I returned to Mayo in late August to have the myelogram done and to see the surgeon again. He came in with a sparkle in his eye and said, “We have found your leak and what has caused the SS.” I cried for three hours because someone had confirmed I was sick and could help me stop more iron deposits, feel better, and continue life.

The Turning Point: Surgery and Beyond

I underwent surgery in September 2020 to implant a gold seed marker at the leak site. My surgery was on September 28, 2020, and as far as I can tell, my leak and further iron deposition have been stopped. I will have an MRI later this year to confirm all this. While I still face challenges, my life has significantly improved.

Looking Ahead: My Future with SS

The day after surgery, Dr. Atkinson advised me that the iron deposits had damaged my spine extensively, and he did not know what the future would hold for my spinal column. The surgery was rough, to say the least, but oh so worth it to slow this monster down. After surgery, I dealt with intracranial hypertension for about six months, which is not uncommon after leak repair surgery. My body has finally regulated the right amount of spinal fluid, and the hypertension is almost gone.

The road ahead is uncertain, but I’m optimistic. I haven’t lost any hearing, and my body is gradually adjusting to its new normal.

So, here I am, sharing my story in the hope that it resonates with someone navigating SS’s labyrinth. You’re not alone; yes, there are answers—even when neurology seems to have none.