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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: Chance for operation. This has me a bit worried. I have a neurosurgeon who is willing to do the operation to help with all the iron but I am slightly worried about what he says. With the amount of iron I have, he doesn't believe it's a bleed, he reckons it has to be multiple bleeds or the wire in my neck is possibly starting to corrode (for lack of a better word). I fractured the hinge bone between C1 and C2. He believes they might not have used or had titanium 26 years ago when they put the wire in and might have used steel. He has told me that even if the operation is a complete success, there is a chance I will come out worse than I went in. From the MRI he showed me it looks like the bleed or source is from my spine as the iron seems to be like a perfect 3-4 mm border around my cerebellum area (I think that's what it is called ). Are there any tests I can get without opening my neck? I mentioned does he think getting a spinal tap do any good to see if there is any blood there but he said what good would that do? (I have to admit I couldn't answer besides saying well I would know now if there was blood there) I could do with some words of wisdom. Thank you.

 

A: It’s very likely that your C1/C2 dural defect is the location of the bleed. You don’t need another procedure to confirm it, but if you really want it you can do a CT myelogram. The CT myelogram also includes a lumbar puncture as part of the test so you can get both in one test. The lumbar puncture will tell you 1. If you’re bleeding and 2. How much you’re bleeding.

Q: Ferriprox for 70-year-old. Thirty-five years ago my husband was diagnosed with bilateral hearing loss. We were told that this was a result of radiation he received after removal of a benign brain tumour at age 11. About 10 years after the hearing loss diagnosis he began to have slurred speech. This was followed about 5-10 years later with movement and balance problems and be began to walk with a wide gait. Over the years he lost much of his sense of smell and taste. The latest problem in the past year has been memory loss which seems to be getting worse. He was finally diagnosed with SS a year ago. Would Ferriprox typically be recommended for a 70-year old with these symptoms? Is there a doctor in the Philadelphia area who has expertise with SS?

A: Ferriprox takes a long time to remove iron from the brain. Depending on the amount at onset, it often takes many years (5-10 years) for most patients to see a benefit. Monthly blood tests, fatigue and the cost of Ferriprox take a toll over the years. In the meantime, the progression often continues but hopefully slows a little. We are working on making this process go faster, but in the meantime, this is all we have. So it’s a major investment and you’re right to take this into consideration when you’re making your decision.

Q: Funding for Ferriprox I have SS. I have been operated on by Mayo at Rochester and they were able to stop the bleed. Dohmen said that if I take Ferriprox it could reduce the iron deposits in my cerebellum which could lessen some of my symptoms, but I am finding difficulty in paying for the drug. Any suggestions will be appreciated.

A: Dohmen should have access to the Co-Pay Assistance programs. They should be able to refer you to one. If you are ineligible or don’t have access to one, a lot of people order the Ferriprox online from outside of the US.

 

Q: Next step - diagnosed last October. MRI shows multiple microbleeds with no known cause. Spinal tap and spinal CT came back with no answers except low opening pressure. I had a CT Myelogram last week that showed no dural tears but the neuroanesthesiologist had trouble finding spinal fluid and went in 3 different places before he could place the dye, he said this was consistent with a leak. Still having severe headaches, what would be the next step?

A: Probably the next step would be a blood patch. A blood patch would have the effect of sealing the leak for at least 3 weeks (which will give you some relief) and hopefully lead to healing of the defect that caused the leak.

Q: Is There a Relationship Between Superficial Siderosis and Wound Development, wound Healing and/or weight loss? My brother has advanced superficial siderosis. I am responsible for his medical care. In recent months, he has been getting many bed sores, his wounds seem to not be healing well, and he seems to be losing more weight than he should. This is despite the fact that they have been feeding him extra and extra well and taking all of the other care steps they should take. Is there a relationship between superficial siderosis and wound development, wound healing, and/or weight loss? Since superficial siderosis patients tend to have bowel issues and my brother has bowel issues, I am wondering whether his body is processing the food they are giving him well enough. Is there anything more that can be done to help him? Also, I am hoping that Dr. Levy will please get involved with my brother's case. He has good doctors and other care, but his case is getting more difficult, and a specialist in superficial siderosis would help the team at least know that we are doing everything known that we should.

A: In theory, there is no direct link between superficial siderosis and wound development. However, if one is severely disabled by superficial siderosis, one could be prone to pressure sores and those are easily infected. Would infections then rev the body into a catabolic state which requires more nutrition. But if your brother is not getting sufficient nutrition, he will lose muscle mass and decompensate even more. This cycle will get worse and worse until the infections are cleared and nutrition is restored. But this can be very difficult to manage.

Q: Bowel & weight loss. My son has been having a lot of bowel problems lately and I’m giving him laxatives and suppositories daily, but they're not working, he’s also off his food, and losing weight. Is there anything else I can do to help him, and keep him out of hospital?

 

A:Severe constipation can occur in superficial siderosis and it must be managed in order to avoid much bigger problems. First, it’s important to clear the bowels of any impaction. Your doctor may have to help with that. Once a little bit is moving, you can use laxatives to keep it moving. Ultimately, the goal is to maintain a regular, high fibre diet to keep the gut healthy. It’s hard when you’re trying to manage someone else’s diet.

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 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 8thcranial nerves. These kind of symptoms are common.

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