Inescapable Realities

Realities

Superficial siderosis progresses slowly during the early years. This may be an unintended blessing considering the years many will spend searching for a diagnosis. Gary’s story timeline has always remained closely aligned with physician estimates. The inescapable reality we must now face is this disease has entered an accelerated stage. I need to be clear. It’s not the superficial siderosis accelerating; it’s the overwhelming effect the symptoms of this disease inflict on Gary’s body. The changes are pronounced and palpable. Visible and Invisible Our life revolves around doctor appointments. Ten trips spread over three states in four weeks. Gary receives very attentive care but I often wish there was something doctors could offer him besides platitudes and bandaids. The symptoms are winning the battle. Gary suffers falls almost every day. We had a physical therapist coming to the house twice weekly for two months; by his eight-week evaluation they threw

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Surviving The Neurology Ride

Surviving The Neurology Ride

A visit to the neurologist often reminds me of stepping up to ride the tallest most twisty ride in the park. You start off slowly inching along, anticipating a thrilling experience with just a hint of fear. Then the bottom falls away and down you go. Sometimes the ride is exciting, everything you expected. Often the anticipation and hype don’t live up to your expectations. Do We Expect Too Much? Gary just finished with his last neurology visit for this year. We’ve had an outstanding year as far as finding solutions to some of his problems. We’re lucky to have been assigned an indulgent doctor who listens to my oft-times long-winded list of concerns. I am aware I can be a high maintenance caregiver at times, but without constant prompting, Gary often rambles through triage sessions. Why does it always feel like it’s never enough? Superficial siderosis is a slowly

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Summertime Neurology Blues

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  We hit the road last week for another trek to see the neurologist. We usually enjoy these long rides up into the heart of Arkansas, but it seems we can’t escape the unplanned detours lately. We headed out with our long list of questions and a feeling of excitement. The latest MRI results should be ready for viewing just in time for our visit. In our last neurology update, I mentioned while Gary receives excellent care from his neurology department they do use residents and medical students from the University of Arkansas Medical Center. Every visit we can look forward to explaining Superficial Siderosis in detail to a new group of wide-eyed young doctors. I will say it’s encouraging to see how engaged they are. Writing notes and paying considerable attention to every detail we tell them. We began our visit detailing the changes Gary has been experiencing since his

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Taming Chronic Headache Pain

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Living With Daily Pain Gary woke this morning without a headache. The first pain-free moment in 12 very miserable years. Complete pain relief. I just want to read those words over and over. A chronic headache or migraine sufferer will understand the long and tearful journey. Imagine the torture of a migraine mixed with the agony of a cluster headache for 76 unending days. Light, sound, and movement all become your enemy. Complete relief lasted for a few glorious hours before a small twinge returned to the base of his skull area. Gary describes the pain as very light now, ecstatic if this is as good as it ever gets. Gary’s daily headache level hovers around a five, seven days a week. He was forced to live and work with a chronic headache for years. His first neurosurgeon thought the pain might be caused by the pressure change as spinal fluid

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Neurology Roadtrip

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We made our trip to Gary’s regular neurology appointment this week seeking answers to his headaches. Since he left the private healthcare sector last January and entered the VA system road trips are the rule. His PCP, blood testing lab and primary audiologist are in a clinic in Texas. The hematologist, regular cardiologist, back-up audiologist, dermatologist, and coumadin clinic nurse are all in Louisiana. Gary travels to Arkansas for his electrophysiology cardiologist, neuropsychologist, and neurology. We may be living a Willie Nelson song, but you can’t say the VA is not thorough.We went to neurology hoping there would be some headway towards relief for Gary’s headache pain. He never sees the same resident or neurologist, so we are in constant new patient mode.   The VA does excel in keeping detailed notes from every visit, so it’s easy to tell if the resident of the day has done their homework.

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Railroad Spike: Chronic Headache Pain

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Living With Chronic Headache Pain   Chronic headache pain has been in our lives for years. Our Superficial Siderosis community has many fellow sufferers. On good days the pain is a dull throb pecking away, neck, eyes, and top of your head. The not so good days it feels like a hot railroad spike through the base of your skull sprinting up to your eyes. Pain that radiates into every part of your head creating excruciating agony.   It’s A Headache Not A Marathon   Gary has always tried to control his pain with over-the-counter pain medications, sitting quietly with his eyes closed and keeping his neck still but this hadn’t been working the last eight months. The severity is increasing along with the duration. This June an unusually debilitating headache took hold and wouldn’t ease up for 76 DAYS. He agreed to a trip to the Shreveport VA emergency room

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