Part of our series of Q & A pages with Dr Levy
We're really grateful that the expert based at Massachusetts General has been working with us since 2015, and we've built up quite an archive over the past few years. With a little sifting you should find the answer you're looking for. However, we know we haven't covered everything, so if there's something else you need to know, please contact us - we'd be happy to forward your question. It's part of what we do.
These answers relate to the balance problems that can arise as a symptom of Superficial Siderosis. If you're looking for something specific, please use your internet browser's page search facility (usually in the top right-hand corner of your screen) to search particular keywords or alternatively, browse down the page to learn more about how Superficial Siderosis can affect everyday life and what can be done to help. If you'd like to broaden your search, you may find what you're looking for on another part of the Silent Bleed site - please use the search box in the header above.
Q: Dizziness. This is something that has only been happening constantly for the last 6 mos. or so. Every time I turn over in bed or get up, quickly turn my head, at all, I get a dizzy feeling like the room spins around to catch up to me. Or my body slowly rises up to catch up to my head. I have to sit for a minute to calm it all down. If I stand up too quickly, I will literally fall on my face and have. Thankfully on the bed this seems like classic vertigo but considering what’s going on with the auditory nerve and ataxia, I wonder if it’s related. Or is it good old labyrinthitis?
A: This sounds like a superficial siderosis complication in the cerebellum and/or 8th cranial nerves. These kind of symptoms are common.
I was diagnosed with SS in 2017. I had head and spine MRis and an angiogram but no bleed was found. I am wondering if a fall in which I landed heavily (and extremely painfully) on my coccyx could have been the cause?
>>>It’s possible that coccyx injury could be the source of bleeding in superficial siderosis, yes.
Q: My wife has Superficial Siderosis. Recently she has had surgery which was verified to stop the bleed. She has balance & hearing loss as a result of her condition. Since her bleed has been stopped, will her condition continue to decline?
A: Yes. The iron that is still stuck on the surface of her brain and spinal cord will continue to cause nerve damage over time.
Options for pain reduction?
I have severe pain just above my left hip in my lower back. I have gotten to the point where the pain bothers me enough to keep me from walking or working out. I have tried Cymbalta and it made me very depressed. I have tried a couple others in that category with similar effects including a lot of sleeping. 800mg of ibuprophen was helping but per this site, we SS'ers shouldn't take it, is that correct? I am now using Tylenol which amazingly is helping. Is tylenol ok to use for the every 4 hours. What else can I try that is not is the area of cymbalta if tylenol is not good? I've read on the facebook page some people are using Morphine. Please advise.
Ibuprofen is generally safe to use. It is a weak blood thinner but generally not harmful in superficial siderosis. Tylenol is also safe. I try to avoid narcotics though. One thing that may help is transcutaneous electric nerve stimulators. These are devices that emit a light electrical discharge to the nerves that enter the spinal cord. The brain prioritizes these electrical signals over pain signals. I would recommend these devices over chronic medication use.
Q: I was diagnosed with SS one year ago. I am from Lithuania, and may be the first patient with SS in my country. What are the statistics for SS? How many SS cases are out there per million people? I can't walk without crutches anymore because of poor coordination, also I can constantly hear rhythmic noises in my head. Is that some of the symptoms of SS?
A: SS is incredibly rare. The incidence is approximately 1 per million. Your symptoms of balance problems and tinnitus are classic for SS.
Q: Hi there I'm messaging from Sheffield, UK on behalf of my dad. He's 73 and been diagnosed with SS around 2000. He's in the advance stages with total hearing loss, nystagmus, loss of bladder and bowel control and in a wheelchair as he can no longer walk. I've heard about Ferriprox and wondered if it can be used in the advanced stages of SS. I've never heard his consultant mention this drug.
A: Ferriprox is approved in the UK and should be accessible. There is no other iron chelator that gets in the brain so it's the only option for treatment at this time. No telling if your dad could see the benefit of Ferriprox since it will take several years to remove the iron.
Q: I have found that the use of cannabis helps me with my coordination the following day taking just one joint per day in the evening helps me greatly with my balance, headaches and leaves me feeling more awake during the day. Is there any evidence or trials to back this and would you recommend it? If I could get a regular supply of cannabis, it would replace 6 tablets a day which cater for the symptoms above.
A: I think medical marijuana is probably good for many neurological conditions. I suspect it's good for some of the symptoms in SS too. I don't know any suppliers. Medical marijuana is legal in my state but there are no dispensaries yet so I don't have any experience using it in my patients.