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We seem to be up to date at the moment but please check back here for new questions before they get sent off to Dr Levy. Once we have a batch of ten, we email them to him and he kindly replies with answers.
If you've read through the all the Q&A pages and you've not found the information you are looking for, please use the form below. It will come through to us and we'll send it on to him, completely anonymously, when we have a batch of ten.
We may sometimes edit your questions to make them easier for others to read and we'll take out any personal references or names before posting them here.
You never know, your question might help someone else too.
We usually send questions to Dr Levy in sets of ten, so it may take some time for your comments to be posted and please make sure your questions refer to Superficial Siderosis, treatments and symptoms only. Of course, always refer to your own physician in the first case.
Many thanks.
Question:
Blood thinners and Ferriprox
I have Marfan’s. Following aortic surgery plus 2 mechanical valves, have been taking warfarin for 20 yrs. Tarlov Cysts and Dural Ectasia diagnosed 6 yrs ago. Recently diagnosed with SS by Prof Werring, to whom I was referred after trying to get a diagnosis from local docs for balance problems for approx 10 yrs. I am not being treated with iron chelators but will, hopefully, see Prof Werring again soon and wondered if I should ask for this treatment or is it incompatible with blood thinners?
Question:
Future treatments
Calcium is known to be an iron chelator. And I read that calcium can cross the blood-brain barrier. But first it has to get into the brain, and then it could possibly latch on to the iron, cross over and go out of the body. Any thoughts about calcium having a future to help? I am aware that if it is in the stomach it is going to latch on to the iron there. One of the reasons why children can become anemic if they drink too much milk.
Does the leftover iron that's in the brain or the spine have any kind of magnetic feature? I was wondering if there is any thought about using a magnetic property to remove iron from where it is leftover? So instead of it latching on to the iron, something that could draw the iron to it? Thank you.
Question:
Iron Tablets
My husband is in a nursing home. He has lost his hearing, his eye sight is not good. He cannot walk anymore. In 2020 he had complete organ failure which has resulted in short-term memory and mentally he is not the person he was.
He has had a number of sepsis infections. The doctor has prescribe iron tablets for him. Should he be taking them and will they do any harm?
Question:
Itchy head
I am getting a very itchy head and was wondering if this could be a symptom of my superficial siderosis...it's when my head gets hot eg: lying down in bed etc ..I only get some relief when it's wet or my body temp is normal ...I feel like ripping my head off at times
Question:
SS reaction
Last night about 2 am I had woke up due to my heart rate beating very fast and my head was throbbing , not sure what was going on but this is the first time this had happened , do you think this is stress or over thinking about situations? I actually went back to sleep and woke up ok , but this episode did scare me I was thinking a aneurysm but it did go away?
Question:
Shivering/ cold for no reason
Why do people with SS have episodes where they get cold and shiver for no reason?
Question:
Superficial Siderosis and sepsis link possible?
Is Sepsis a symptom of superficial Siderosis? I have had sepsis quite a few times , they put it down to ferriprox, I have had sepsis since ferriprox stopped also, is sepsis is a symptom of MS?
Question:
Superficial siderosis expertise in Queensland. Please my husband I feel is in a bad way and I feel the NHS don’t want to know. And I’m becoming very worried. My husband recently collapsed with severe dizziness, vomiting and profuse sweating. He was admitted to hospital for 3 days where he was re-hydrated and extensive tests were done. The MRI results show siderosis with "cerebral amyloid angiopathy a consideration". Our GP has been less than helpful, unsympathetic and dismissive. What can we do? SE Queensland, Australia.
Question:
recent diagnosis- worsening symptoms after head trauma
I began experiencing hearing loss about 9 years ago, at the time an MRI was done and what was described to me as 'iron residue' was found in my brain. At that time, in 2016, I saw a neurologist, neurosurgeon, and neuro-interventionalist who did an anagram to rule out a current bleed but nobody could give me answers as to what the residue was.
In 2000 (age 10) I was in a major auto accident, and I fractured the top of my spine. It was assumed I had a bleed that was unnoticed then that healed itself. In 2016 I began experiencing one sided hearing loss and would get intense headaches but after getting no answers from providers, I learned to control them by staying hydrated and getting adequate sleep. I have been a healthy individual my whole life, eat clean and stay active.
In September 2022 I suffered 2 hits to the head within a week, the second resulting in a concussion. My symptoms lasted well beyond the normal healing time for a concussion and still persist even 5 months after my concussion. I have had tinnitus constantly since the hit, the ringing worsens if I do strenuous exercise or if I am around loud noises. My balance has gotten much worse, prior to the concussion I did yoga and paddle-boarded regularly with ease, now I have terrible balance and often stumble for no reason while walking or standing. At times my speech is slurred or I have trouble finding my words. The headaches have increased dramatically, especially with physical activity. My family had noticed my hearing is much worse now. This is what led me to another ENT visit, it was discovered that my L side hearing was almost completely diminished and now I have lost about half of my hearing on the R side. My ENT ordered the MRI to investigate and diagnosed the superficial siderosis that I have likely had for some time. My question is how the concussion could have affected the SS that was already present? Do you think with SS my recovery from the concussion is simply delayed, or could this potentially be permanent damage? I know the progression is generally gradual, but I am wondering if additional trauma caused additional nerve damage? A neurologist has suggested topirimate to help with the headaches, and I am also wondering if this is a good medication for SS?
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