Treatment Journey

A Whirlwind Testing Tour


Test Hope

We’ve been doing the whirlwind testing tour with Gary’s many specialists these past few weeks. Not only was it time for his quarterly neurology follow-up, but we found ourselves eagerly waiting for his first MRI scan and hearing test update since Gary began chelation therapy with deferiprone this past year.

Our health insurance network is being changed from a PPO to an HMO next year, so we suffered a few weeks of panic after receiving a policy change notice from Blue Cross Blue Shield of Texas. HMO networks are not popular with doctors in our rural area. Seven specialists and one PCP currently provide care for Gary, but not one was in our new HMO network.

UPDATE: Every specialist but the neurologist joined the HMO network before the January deadline.

First Stop The Audiologist

Our first stop was the audiologist. This summer, Dr. Lee had mailed us a copy of a  magazine article from one of her professional publications. It outlined how audiologists are now being asked to screen patients with sensorineural hearing loss and a history of trauma. The article then describes a diagnosis of a rarely seen neurodegenerative condition called Superficial Siderosis, the disorder’s effect on hearing loss, and the importance of early diagnosis. Next, audiologists were prompted to identify possible matches for suspected Superficial Siderosis using case histories to determine if an MRI and neurological referrals were necessary.

Every single year, since 2007, there has been a slowly descending curve downward with each hearing test. The last two yearly audiograms were so bad that the report graph resembled a cliff dive. Gary had prepared himself for another decline. His hearing aids weren’t performing as well as they had been, so he assumed the worst. Imagine our surprise when our audiologist said there was NO CHANGE in his hearing levels since last year. Eight solid years of decline and, for now, it seems leveled out.

Dr. Lee told us Gary’s brain was getting used to the current sound level of the hearing aids, and she would adjust them a notch or two. But, unfortunately, a Sensorineural hearing loss is difficult to correct. Some days are great, and then there are days nothing seems to help, so while the hearing aids cannot give perfect results, it is still a vast improvement.

Next Up the Radiologist

Next on the line-up was a trip to the radiologist for an updated brain MRI, with contrast, on the same MRI machine that had been used to make the diagnosis in the first place. We also had thoracic, and lumbar baseline scans done for future reference. We’ve never known for sure if there were hemosiderin deposits along the spinal area too, but newer symptoms over the past year have suggested the spine was involved.

Our neurologist has always felt Gary still has an active bleed. During our visit, we discussed the three possible outcomes. First, there would be an increase in iron. Second, there would be no change or dare; we hope there would be a slight decrease in the deposits. Finally, we decided if the scans showed an increase, she would schedule a lumbar puncture to try and confirm an active bleed. If this were the case, our Doctor would refer us to a neurosurgeon at the Mayo Clinic to attempt a repair sometime next year.

Luck was teetering on our side again. We didn’t get our decrease in iron, but we hadn’t honestly expected one. We already know it will take years to see signs of removal. Still, the radiologist also reported no increase in any areas, nor was any further volume loss in the cerebellum noted. Baby steps in the right direction, and we’ll take them!

We will not see our neurologist again until 2017 (when Gary is eligible for Medicare) unless BCBS will give us a waiver for continuity of care. After that, we will appeal by mail; while we aren’t holding our breath, we still hope for a good resolution.

Pain Relief

The rheumatology consult went very well. Gary was able to get some relief from his trigger fingers with cortisone shots. In Gary’s case, the trigger finger problem is not SS-related. Dr. Chou also diagnosed Statin Myopathy caused by a ten-year use of cholesterol medication. We want to suggest if you are currently taking medication for high cholesterol, to discuss it with your neurologist. SS patients already have a full load of aches, pains, and body problems without adding Statin Myopathy on top of it all.

The rheumatologist ran a new battery of tests and ruled out Sjogren’s disease, Fibromyalgia, Rheumatoid Arthritis, and half a dozen other ailments. He was very pleased our TCM therapy was working for the Superficial Siderosis related neuropathy. Unfortunately, this will be our only visit since Dr. Chou is not on our new HMO network. The search will begin for another rheumatologist after the new year.

What’s The Verdict?

Hearing loss is leveling off. There were no additional iron deposits seen or further damage to the cerebellum. So we have to chalk this up to the first excellent news we’ve had after starting down this road.

Things were looking pretty scary for us this time last year, but this is the beginning of hope. First, I hope the degeneration slows down, so the chelation therapy has time to do the tough job of removing the iron. Second, I hope we’ve got a handle on the pain and discomfort. We know all the pain won’t disappear, but Gary can live with it if kept at a manageable level.

We continue to try to walk several days a week even though balance and gait problems continue to plague Gary. We’ve pretty much resigned ourselves that the balance and vision issues are here forever but, we still have 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,

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  1. My husband just diagnosed with SS plus other things by outside Docs. He’s also VA. How should we proceed in the VA system so he can get ferraprox?

    1. Hi, I’ve sent you an email this morning with some information. Please let me know if I can do anything else. Rori

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