Latest questions

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.

Hot off the press - you'll find the latest from Dr Levy here. After a while, these get archived, so have a look through the other headings if you need to find out about something specific. If your question still remains unanswered, please get in touch and we'll pass it on for you.

 

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 batches of ten, so it may take some time for your comments to appear here 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.

 

We're really grateful that the expert 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.

Part of our Dr Levy Q&A pages

Q: It was great to listen to the Dr Levy presentation with Jason Roberts. What is the name of the antioxidant medication, please?

 

A: There is an anti-oxidant supplement called inosine that we are going to investigate for a benefit in superficial siderosis. We don’t have data on this yet but it seems to help in other neurodegenerative disease and it appears to relatively benign otherwise. We are planning an observational sponsored by the Superficial Siderosis Research Alliance in 2021.

 

 

Q: Hello Dr Levy. You may recall I sent you a message asking 'When I was 12 I had a brain aneurysm, my sister had a stroke a year ago, could weak blood vessels be hereditary?’ to which you replied ' Marfan’s syndrome is one such disorder of blood vessel walls that can be leaky and cause aneurysms and superficial siderosis.' As we both have children, should we get them checked for Marfan’s syndrome? 

 

A: Marfan’s syndrome is not a difficult diagnosis to make. Although it’s a genetic illness, there are many physical features of Marfan’s that should be evident on physical exam. There are other genetic causes of ‘weakened’ blood vessel walls but I’m not really an expert in this area. If you are keen to investigate further, I recommend a visit with a medical geneticist.

 

 

Q: I was diagnosed 5 years ago. I am a paraplegic which has masked the condition for many years. It is 38 years since I was stabbed in the spine. I am getting new symptoms. Dr Levy said the only thing you can't do, is do nothing. I was put on deferiprone for a year and a half which made me feel better, but I became anaemic. No one is sure if this was due to the meds as nothing changed when I came off. I feel that was the only hope for me, but because there was still blood in my lumbar puncture I was never put back on the meds. The scan with dye has not been done. I now have problems with temperature and get sweats and often vomit with no warning. Also bladder problems. Because of my spinal injury, I'm worried that the siderosis is being overlooked or put down to my spinal injury. In the morning my head feels terrible for a few hours. It takes a lot longer to feel ok in my head. My speech is getting worse. I feel desperate to do something before my quality of life is completely gone. I have children and a wife that I'm not ready to give up on. Please can you help me? I am happy to enter a trial.

 

A: I think you are right that some of your symptoms are likely due to either additional bleeding into the spinal fluid or due to superficial siderosis. In both cases, deferiprone could help and I would try to advocate for that treatment again. I assume cost is the issue with deferiprone which is why you’re asking about a potential trial? I hope to launch another deferiprone trial in 2021 but I don’t have more details on that right now.

 

 

Q: Diagnosis. I’m 25 years old with a history of migraines. I have a subarachnoid cyst that we’ve been watching for 10 years. I recently had an MRI showing a new curvilinear low signal susceptibility artefact along the right great horizontal fissure, suggesting a possible focal area of superficial siderosis. My neurologist assumed it was the result of a brain bleed. He referred me to a local neurosurgeon and he agreed that he thought it was a bleed. My question is can superficial sidersosis present in just a focal area at the beginning? Both doctors told me it would be everywhere on my scans if it was SS. I guess I’m just not sure how similar brain bleeds and SS look. I’m worried if it is SS and I don’t get any sort of early intervention, that symptoms will progress throughout the span of decades until it’s too late to treat.

 

A: What you are describing is called focal siderosis, rather than classical superficial siderosis. A patch of blood products from a nearby bleed does not lead to superficial siderosis and is almost always fairly harmless. However, if you continue to bleed over and over again, the blood products may deposit on other parts of your brain, and that could lead to superficial siderosis.

 

 

Q: Degree of progression. Is there any other procedure beside MRI or observable symptoms to determine the extent of the progression of the disease? For example, monitoring the level of ferritin. Also, can hemosiderin be monitored? Can free-radical iron molecules be numbered and monitored?

 

A: Great question. We’re working on that. Currently, there are no biomarkers in superficial siderosis. Ferritin in the spinal fluid (not the blood) has been proposed but we haven’t studied that yet. Ferritin in the blood is not a useful biomarker. It’s only useful to monitor chelation by deferiprone.

 

 

Q: Superficial siderosis in right-brain due to cerebral venous sinus thrombosis (CVST) haemorrhage. I have recovered from CVST but due to haemorrhage, ss is active. I am taking levetiracetam is this reducing my siderosis problem? At the moment I’m only experiencing dizziness but I have superficial siderosis on my mind. Can it be cured permanently?

 

A: If you have a one-time cyst haemorrhage, it’s unlikely to cause superficial siderosis. You may have blood products deposited on the brain after the haemorrhage, but usually, the brain has the capacity to remove those over time. It’s only from repeated bleeds that occur over many years that the removal process is overwhelmed and that leads to superficial siderosis neurodegeneration.

 

We are trying to cure SS by using several parallel approaches: 1. Stop the bleeding, 2. Remove the iron deposits and 3. Prevent neural damage from the old iron deposits.

 

 

Q: Treatment of superficial siderosis. I have a diagnosis of ss based on two MRI's of this past March and June. I have a doctor probing in the dark and still guessing. I know you are an expert on this. How do I treat this? I am in sad shape because of it.

 

A: Superficial siderosis is very, very rare and most doctors have not heard of it. If your doctor is interested, they are more than welcome to contact me by email and I can advise them: mlevy11@mgh.harvard.edu.

 

 

Q: Care home. Hi, a good friend of mine has superficial siderosis and I’m desperate to find a care home for him in Norfolk or possibly Sussex. Can you recommend any? He is fortunate enough to have funds available to pay for his care but is currently in an NHS care home for mentally ill patients in South London. He would probably need to be assessed prior to a move. Covid hasn’t helped with trying to get him moved. Any advice would very welcome, we’re desperate to get him moved from a facility that we don’t think caters specifically enough for his needs.

 

A: I have to admit that I have only been to London twice in my life. I truly enjoyed my visits and would love to visit more of the UK someday! I don’t know how to advise you about your friend with superficial siderosis.

 

 

Q: I have superficial siderosis and the dizziness is making it very hard to get out of bed. The feeling like I have been on a merry go round is so bad I need to sit or lie on it. I had a very large brain tumour removed in 1989 and another one that filled my ear canal and spilled out because it was large. I had all my bone drilled out and filled with fat from my tummy. Three years before the superficial siderosis, I was diagnosed with relapsing polychondritis and wonder if the two could be related. The first tumour was by the cerebellum. I am 72 years old and told nothing will be done because of my age and I can not walk without my frame. I wonder if this would shorten my life by much. I live in New Zealand.

 

A: You are the third person in New Zealand I know with superficial siderosis! I suspect your bleeding is due to the extensive surgeries you have had around the skull and that probably resulted in bleeding scar tissue. Superficial siderosis does not tend to shorten lifespans but it can be very disabling in some.

Get Social with us!

Our Facebook group is a kind and compassionate space for people with superficial siderosis to share the ups and downs of everyday life - search 'superficial siderosis - the silent bleed' and send a request to join.

  • Facebook Social Icon

(c) The Silent Bleed 2019

Registered as a Charity in England and Wales since 2016

Text reproduction and sharing

 

The reason we exist is to make our voices heard about superficial siderosis, so please feel free use the text on this site as you need to - all we ask is that you clearly mention us as the source and that you drop us a donation. Please ask permission to use photographs because many of them feature our members and it's only fair to ask them first. Many thanks.