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 for particular keywords. Alternatively, scroll 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.
Question:
Dizziness. This is something that has only been happening constantly for the last 6 months or so. Every time I turn over in bed or get up quickly and turn my head, 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 I 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?
Answer:
This sounds like a complication of superficial siderosis in the cerebellum and/or 8th cranial nerves. These kinds of symptoms are common.
Question:
Hi there, I'm messaging from Sheffield, UK on behalf of my dad. He's 73 years old and was diagnosed with SS around 2000. He's in the advanced stages, experiencing total hearing loss, nystagmus, loss of bladder and bowel control, and he's now using 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.
Answer:
Ferriprox is approved in the UK and should be accessible. There is no other iron chelator that crosses the blood-brain barrier, so it's the only option for treatment at this time. It's uncertain whether your dad could benefit from Ferriprox since it will take several years to remove the iron.
Question:
I have found that the use of cannabis helps me with my coordination. Taking just one joint per day in the evening greatly assists me 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 the six tablets a day which cater to the symptoms above.
Answer:
I believe that medical marijuana is likely beneficial for many neurological conditions. I suspect it may also alleviate some of the symptoms associated with SS. However, I am not acquainted with any suppliers. While medical marijuana is legal in my state, there are currently no dispensaries operational, so I lack firsthand experience in administering it to my patients.
Question:
I was diagnosed with SS in 2017. I underwent head and spine MRIs and an angiogram, but no bleeding was found. I am wondering if a fall, during which I landed heavily (and experienced extreme pain) on my coccyx, could have been the cause?
Answer:
t's possible that a coccyx injury could be the source of bleeding in superficial siderosis, yes.
Question:
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 there per million people? I can't walk without crutches anymore because of poor coordination, and I also constantly hear rhythmic noises in my head. Are those some of the symptoms of SS?
Answer:
SS is incredibly rare, with an incidence of approximately 1 per million. Your symptoms of balance problems and tinnitus are classic for SS.
Question:
My wife has Superficial Siderosis. Recently, she underwent surgery which was verified to stop the bleeding. She experiences balance and hearing loss as a result of her condition. Now that the bleed has been stopped, will her condition continue to decline?
Answer:
Yes. The iron that is still stuck on the surface of her brain and spinal cord will continue to cause nerve damage over time.
Question:
Options for pain reduction?
I have severe pain just above my left hip in my lower back. The pain has reached a point where it significantly hinders my ability to walk or work out. I have tried Cymbalta, but it made me very depressed. I have also tried a couple of other medications in that category, which had similar effects, including causing excessive drowsiness. While 800mg of ibuprofen was helpful, I read on this site that it's not recommended for those with SS, is that correct? Currently, I'm using Tylenol, which surprisingly provides relief. Is it okay to take Tylenol every 4 hours? If Tylenol is not recommended, what other alternatives can I try that are not in the same category as Cymbalta? I've seen on the Facebook page that some people are using Morphine. Please advise.
Answer:
Ibuprofen is generally safe to use; it is a weak blood thinner but generally not harmful in superficial siderosis. Tylenol is also safe. However, I try to avoid narcotics. 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.