Inescapable Realities

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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.

healthy
Toys for Tots Run
December 2014

Disease Progression– change in the way an illness affects a patient as it moves from its earliest stages to its peak and then to its resolution.

Medical Terms Dictionary
work
May 2014

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 in the towel. The evaluators’ report stated his neurological problems were beyond their ability to help. I’ve been given the contact information of a PT program that was really helpful to our closest superficial siderosis neighbor but a three-hour drive each way makes it impractical.

His loss of smell combined with hearing loss and short-term memory problems has led to new concerns. Gary wakes at 5:00 am during the week to take his medication, makes coffee, and brings me a cup while I work on my project of the day. He lays back down and sleeps until breakfast at 7:00 am. A few weeks ago I went into the kitchen to grab a refill when I was hit by the unmistakable smell of gas.

2017
May 2017

Gary had decided to put a large pot of water on to simmer but his hearing loss and anosmia made it impossible for him to realize the igniter had not lit the burner. If I had not gone in for more coffee he would have never known the kitchen was full of gas. When I realized what had happened I walked to the stove and turned off the burner. That simple turn of the knob caused the igniter to spark and shot a heart-stopping ball of fire straight up. Imagine if he had gone back in at 7:00 to cook breakfast.

Positives vs Negatives

A failed cardiac ablation, five pulmonary embolisms, two DVTs’ and subsequent pacemaker have Gary on a lifetime regimen of blood thinner. His chelator is being worked overtime which might explain why some symptoms are now going into overdrive.

doctor appt
December 2019

We’ve been fighting for his active bleed to be repaired since he was diagnosed. Gary returns to his neurosurgeon early next week hoping for the one procedure we want more than any. Earlier this summer the case was referred to an interventional neuroradiology specialist in hopes a less invasive procedure could be performed but it wasn’t accepted.

Disappointment doesn’t help depression.

As bleak as this tale may sound we cling to the positives. After five years of chelation therapy, his headaches are under control and his hearing has remained at a steady level for well over a year. Our best hope is new research will discover the key to kicking the chelation process into high gear. While his physical condition is distressing now, without progress, the future may be worse.

About 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. We invite you to join us as we share the details of our life, finding care, and the search for answers of how to navigate this extremely rare disorder.

6 Comments

  1. So here is how bad my memory is, forgot that my comment today is so similar to the last one.
    But I will add
    For Morris. I feel like a hot potatoe, sometimes, that no doctor wants to deal with. So in my mind, they cannot cure this SS, so why even deal with it. So I’ve asked them, if this is like having MS, what do you do for those patients. Your situation Morris is truly worrisome . I happen to have very good health coverage from my work in NY. So I will add you to my prayers and hope in the future your run around won’t be so dire.

  2. My condition resembles Gary’s. The degenerative process seems to have accelerated this year. I took a nasty fall in the kitchen the other night, my ability to walk is dangerous, and my Tinnitus levels have skyrocketed.

  3. NHS Tayside refused to investigate my giant pseudomeningocele and dura defect fro three yers between Feb 2009 and Jan 2012 when I accepted the offer of investigative and corrective surgery by the German NHS. NHS Tayside refused to accept the German NHS report which included photographs of the large dural defect.
    A second opinion on my claims of progression neurological symptoms since 2009 were denied until during a second opinion by UCLH Queens Square London following my producing and enlarged copy of the photograph by the German NHS which showed the defect in my dura located between thebremains of the stitches used by the NHS Tayside neurisurgeon to close the incision inn my dura necessary to remove then tumour on 3 Feb 2009. The defect through which my spinal cord could be seen. It was that photograph which changed the UCLH neurologists opinion. He had taken no interest in all the other evidence I had produced not even the report by the German NHS. But he went pale when I produced that enlarges photograph sat down heavily was obviously thinking what does this man know. He was aware I had received advice from the Clinical Directors of neurosurgery in Johns Hopkins, and the German Spinal and Stroke Centre in Hamburg plus Dr Kothbauer in the Swiss spinal Centre in Lucern. The result of that second opinion was the diagnosis of MILD CNS SS. In August 2019 when UCLH confirmed Ferriprox was appropriate in my case the wrote advising NHS Tayside and also confirmed that the PRIMARY intervention which had resulted in my CNS SS being mild was the investigative a corrective surgery by the German NHS in Jan 2012. I am now being treated with Ferrioprox but GPs and hospital doctors are refusing to arrange the weekly blood tests. Or more correctly they have aranged the first blood test and refused to allow any others. Hence UCLH had to email a letter of appointment so that I was authorised to Tavel the 1000 mile round trip to UCLH Euston Road London for a 15 minute blood sample. So I still need another blood sample tomorrow which hopefully a doctor in our local hospital will arrange following contact from UCLH but that doctor has telephone to say she will telephone again today to give me details of where to go if no alternative blood sample can be done. But she said it will only be done once and all other samples will have to be done elsewhere.
    I can only suggest that following my experience it is vital that dural defects are located and repaired ifs they are present and as soon as possible.

  4. Yep. Looks like I am headed down the same road. Only I am alone. Gary is thankful that he has you I am sure. They found the leak at Mayo but I still have all the symptoms and the symptoms still progress just not as fast.

  5. My heart goes out to Gary , prayers help too.
    What about pain, is Gary’s pain very bad?
    I will get my next shot of Depo-Medrol in my lower back in early January . Then for a month , just being relieved of that pain is wonderful. The bottoms of my feet are like walking on rocks, symptoms are accelerating for me too.
    This adventure Gary & I are experiencing , is hard to put into words!

    • Gary is in constant body pain but he still refuses to take anything stronger than Tylenol. His neuropathy in his feet is beginning to overcome the relief his Chinese herbal remedy has afforded him for the past five years. His autonomic nervous system is also effected now. We’re pinning all our hopes on research at this point.

      The alternative is too hard to face. We will keep you in our prayers too.

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