When Neurology Has No Answers
Greetings, fellow Superficial Siderosis patients; my name is Bena Travis. I’m a 62-year-old retired florist and wedding planner living in the USA’s beautiful Western Kentucky lakes area. My husband and I live on the lake, boating as much as possible. To help them from becoming extinct, we hand raise Monarch butterflies in the summer as a hobby. I try to stay active even though some days it’s tough to do that. My SS is due to a ventral spinal cerebrospinal fluid leak at thoracic level T-4. The disc at that level developed a large bone spur that punctured my Dural lining, causing my spinal fluid and blood to disperse throughout my body. Looking back, I suspect this had been going on for about ten years.
Just live with It?
My first MRI scan, where the SS was found, was in 2018 when I saw a local neurosurgeon for headaches, neck pain, and balance issues. I also suffer from Mal de Debarquement syndrome, so balance issues were nothing new to me. This neurosurgeon knew enough to identify the SS but would not see me again after reviewing my scans; he said he did not treat SS. He referred me to the head of neurology at the University of Louisville, who didn’t seem to know much about SS either or why I had it. He told me to go home and live my best life and have a repeat scan locally in a year. By that year point, I was feeling worse with severe headaches and even worse balance issues.
Will No One Help?
I tried to get that yearly repeat MRI scan from the local neurosurgeon who originally 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 this time he only ordered an MRA. I returned to him in January of 2020, but by that point, 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 mad and determined to find answers on my own; I had no one in Kentucky to help me.
Turning to the SS Community
I joined the Superficial Siderosis Facebook group, listed my symptoms, asking for help and ideas. I immediately got ideas and suggestions from the members on there. They all told me I probably had a leak which none of the doctors I had seen mentioned or identified on imaging. Now my problem was to find someone that could help me. My insurance wanted me to stay in my home state and there simply wasn’t anyone that had a clue about superficial siderosis, CSF leaks or the possible relation between the two.
Contacting the Specialists
I emailed Dr. Michael Levy, head of the Superficial Siderosis Clinic and Research Laboratory at Massachusetts General Hospital. He suggested I travel to see him or the Mayo Clinic in Rochester, MN, to see Dr. Neeraj Kumar. I opted for Dr. Kumar because, at that point, I was most interested in seeing if I had a leak and getting it fixed.
I sent my 2018 MRI scans and clinical notes along with a letter explaining my symptoms to Dr. Kumar. He agreed to take my case. In July of 2020, this was right in the midst of the Covid pandemic, so we had a zoom appointment. He was awesome. After listening and letting me tell my story, he said, “now let me tell you about what I know about you from your scans.” He confirmed my SS, identified intracranial hypotension, and found my leak on those 2018 scans. I asked him why my local neurosurgeon or the two University of Louisville neurosurgeons I saw didn’t see the leak. His reply was, ” Ms. Bena, there are not many doctors out there that understand SS and 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 pretty profound words for me after my search of many years, especially the past two years.
Fighting The Insurance Roadblocks
He set me up to come to the Mayo clinic for full spine and head MRIs and consult with Dr. Atkinson, a Mayo neurosurgeon. With my appointment to go for scans was in just two weeks, now the fight with my insurance began. I sent the letter from Dr. Levy as well as clinical notes from Dr. Kumar. 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, in part because they have never heard of SS or CFS leaks either.
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 talking with the neurosurgeon at that time. I saw Dr. Atkinson the day after my full 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 literally cried for three hours because someone had confirmed I was sick and could help me stop more iron deposits, feel better and carry on with life.
In late September, I returned to Mayo (had to wait on insurance once more) to have a gold seed marker implanted at the leak site so the surgery team would know exactly where to make the incision and have all the blood work to prepare for surgery. My surgery was on September 28, 2020, and as far as I can tell, my leak and further deposition of iron have been stopped. I will have an MRI later this year to confirm all this.
The day after surgery, Dr. Atkinson advised me that the iron deposits had produced a lot of damage to my spine, 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 figured out the right amount of spinal fluid it needs to operate, and the hypertension is almost gone. I am 8 months post-op and still dealing with muscle and nerve issues but can now lead a fairly normal life. On a really good note, so far… I have not lost any hearing!!!!