Treatment Journey

Neurology Roadtrip

Neurology Roadtrip

We made the journey to Gary’s quarterly neurology appointment this week to find an answer to his chronic headaches. Since he left the private healthcare sector last January and entered the VA system, long out-of-state road trips are the rule.

His primary care physician, lab for blood work, and audiologist are in a small clinic in Texas. His hematologist, regular cardiologist, backup audiologist, dermatologist, and coumadin clinic nurse are all 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 Healthcare System is not thorough. We went into his neurology appointment hoping there would be a solution to providing relief for Gary’s chronic headache pain.

The Provider Merry-Go-Round

He never sees the same resident or neurologist, so we are constantly in new patient mode. However, 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. Gary was prescribed Divalproex five months ago for headache pain. He takes 500 mg nightly at bedtime. The medication has not been successful in stopping the pain but what it has accomplished is reducing the duration of the excruciating headaches. Five months ago, his most severe headaches would last two weeks or more, with the worst lasting 76 days before it let up. The Divalproex has managed to reduce the duration to three or four days. Not pain relief by any means, but it is an improvement.

Knowing What It’s Not

Neurology ruled out craniospinal hypotension since a position change never offered any relief from the pain. Also, Gary’s brain doesn’t sag on his MRI series, indicating low spinal fluid. We had discussed Dr. Levy’s theory about blood from an active bleed aggravating the nerves and surface areas during an earlier appointment. Still, the neurosurgery department had reviewed his MRI series and was not willing to go back into his neck until his symptom progression worsened.

The resident brought in the neurologist on call that day after some discussion. He had Gary describe his pain, the location where it started, plus the path it traveled. He examined Gary’s neck and head, exploring the tender points before explaining his intended plan of care. First, the Divalproex prescription will be increased to 750mg daily. We will return in a month to the pain clinic. Second, Gary will start a program of quarterly Occipital Nerve Block injections into the base of his head. These shots will not stop the cause of the headaches, but hopefully, they will ease the pain to a manageable level, so he isn’t miserable all the time.

What is an occipital nerve block?

Occipital Nerve Block Location
Occipital Nerve Block Location

The doctor explained the injections would be a combination of steroids, anesthetic (plus one other thing). The anesthetic will block the nerve pain, and the steroids will reduce and hopefully control any inflammation or swelling. The expectation is pain relief should last around 10-12 weeks.

Our return to Little Rock is scheduled for mid-February and will include a consultation with an ENT for a swallow study. Gary’s dysphagia is still mild, but there is a concern since he is showing increased symptoms.

His nystagmus and gait issues are more advanced than they were five months ago. Our resident asked Gary’s PCP to set up physical therapy sessions closer to home. Gary should be able to learn some techniques to help him maintain his balance a little better.

February feels like a lifetime away now. So please keep your fingers crossed for Gary.

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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. As always your explanations details and links provided are excellent. This is undoubtedly the best site for people with Superficial Siderosis. You deserve the equivalent of an Oscar or some more relevant award. Thank you again.

    1. Thank you, Morris. I think this blog helps us as much as we want to help others. Writing is a wonderful way of coping.

      1. I agree writing helps me arrange my thoughts and vent my frustrations. If only I could constrain myself to be as clear and helpful as your blog.

  2. Thank you so much for sharing your wealth of knowledge pertaining to Superficial Siderosis. I don’t do FB, so I signed up for your blog months ago. I am a patient of Dr Levy, and have been taking Ferriprox since Sept 2012. May God bless you and Gary. I will lift you and yours in prayer! ???

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