The Whirlwind Test Tour
We’ve been doing the whirlwind testing tour with our many specialists these past few weeks. Not only was it time for our quarterly neurology follow-up but we found ourselves eagerly waiting for the first MRI and hearing tests since starting on Ferriprox this past year.
Our health insurance network is being changed from a PPO next year to an HMO, so we suffered few weeks of panic after we received notice from BCBS of Texas. HMO networks are not popular with doctors in our rural area. Seven specialists and one PCP currently provide care for Gary, and no one was in an HMO network. UPDATE: Every doctor but the neurologist joined an HMO network before January.
Our first stop was the audiologist. Dr. Lee had mailed us a copy of a magazine article this summer from one of her professional publications. It outlined audiologists now being asked to screen patients who present with a sensorineural hearing loss. Identify case history, determine if an MRI and neurological referrals were necessary. The article then describes a diagnosis of a rarely seen neurodegenerative condition called Superficial Siderosis, its effect on hearing loss and the importance of early diagnosis.
Every single year, since 2007, there has been a slowly descending curve downward with each hearing test. The last two yearly hearing tests were so bad the report graph was beginning to resemble 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 up a notch or two. 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 aren’t able to give perfect results it is still a vast improvement.
Next on the line-up was a trip to the radiologist for an updated brain MRI, with contrast, on the same machine that had been used to make the diagnosis in the first place. We also had a thoracic and lumbar scan 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. There would be an increase in iron. There would be no change or dare we hope there would be a slight decrease in the deposits. 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 then 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 several years to see removal, but the radiologist also reported no increase in any areas nor was there any further volume loss in the cerebellum noted. Baby steps in the right direction, and we’ll take them!
We will not be able to see our neurologist again until 2017 (when Gary is eligible for Medicare) unless BCBS will give us a waiver for continuity of care. We will make our appeal by mail, so while we aren’t holding our breath, we still hope for a good resolution.
The rheumatology consult went very well. Gary was able to get some relief from his trigger fingers with cortisone shots. In Gary’s case, trigger finger is not SS related. Dr. Chou also diagnosed Statin Myopathy caused by a ten-year use of cholesterol medication. We wrote a blog post this summer, Rethinking Cholesterol Medication, about our concerns regarding statin use by a person diagnosed with Superficial Siderosis. 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 having to add Statin Myopathy on top of it all.
The doctor ran a new battery of tests and ruled out Sjogren’s disease, Fibromyalgia, Rheumatoid Arthritis or 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 was no additional iron deposits seen or further damage to the cerebellum. 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. Hope the degeneration slows down, so the Ferriprox has time to do the tough job of removing the iron. Hope we’ve got a handle on the pain and discomfort. We know all the pain won’t disappear, but if kept at a manageable level, Gary can live with it.
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.