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Latest Questions & Answers

Part of our Dr. Levy Q&A pages

Hot off the press - you'll find the latest from Dr. Levy here. After a while, these are archived, so take 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.

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We typically send questions to Dr. Levy in batches of ten, so it may take some time for your comments to appear here. Please ensure that your questions refer only to Superficial Siderosis, its treatments, and symptoms. Naturally, always consult your physician in the first instance.

 

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Latest Questions and answers

Subject:

Further information regarding the published Ferriprox

MESSAGE:

Good afternoon, I would like to request the results of the tests conducted with the drug Ferriprox on patients with SS. The reason for this request is that I have recently been diagnosed with this condition, and here in Brazil, there is limited knowledge regarding treatment with iron chelators. Therefore, I intend to use the results of these tests to appeal to my health plan for coverage of the drug.

Thank you very much.



>> This is the latest study we completed with Ferriprox, describing the benefits we observed:



https://pubmed.ncbi.nlm.nih.gov/29285884/



This article is free of charge to download and share.

Subject:

Ibuprofen

MESSAGE:

I've read a great deal of the Q/A and I'm asking if ibuprofen is okay for headaches. My husband has recently been diagnosed with extensive SS in the cerebellum and has been advised not to take ibuprofen. Other prescribed medications aren't proving effective for him. Codeine simply knocks him out, and he doesn't like that. He says ibuprofen is the only thing that helps.



>> Ibuprofen is probably fine. Ibuprofen makes platelets a little less sticky, and therefore the implication is that it could worsen any internal bleeding from sickle cell disease (SCD). Surgeons advise avoiding ibuprofen before surgery to prevent bleeding complications. However, no one has tested ibuprofen in SCD, so it's unclear whether this extrapolation is valid. Moreover, every medication decision involves balancing benefits and side effects, so if ibuprofen is the only effective option, it might still be the best choice.

Subject:

Stuttering and forgetting words

MESSAGE:

My son has a new symptom; he's started stuttering when talking, and he looks confused. He's had SS for 21 years and is quite advanced. Is this stuttering related to SS? He's also had 6 strokes as a child.



>> It’s possible that this could be related to SS. If SS involves the language centres of the brain, I suppose this could happen. It could also be due to damage from the previous strokes. Or maybe a combination. The other possibility to consider is a small seizure related to the previous strokes. The reason I raise that possibility is that after small seizures, people feel confused.

Subject:

Superficial hemersiderosis

MESSAGE:

I had the Pfizer vaccine in January 2021. Three weeks later, I couldn't move my right arm; it was frozen, and I could not move it at all. Since then, I've had a lot of things happen. I had an MRI scan and was diagnosed with SS. They think the vaccine caused an allergy for me. Am I able to fly with SS?



>> This is an unusual way to receive a diagnosis of SS. I suspect it had nothing to do with the Pfizer shot or the frozen shoulder. However, if it resulted in an MRI, at least now you are aware of the SS and can endeavour to address it before it manifests symptoms. There are various types of superficial siderosis – including both benign and detrimental varieties – so it's imperative to seek expert advice in your specific case. Indeed, it is safe to fly with SS.

Subject:

WHAT WOULD YOU LIKE TO ASK?

MESSAGE:

Dear Dr. Levy,

The use of Botox has been brought to my attention.

I underwent brain surgery for meningioma in 2006. A fluid sac developed in place of the benign tumour. Bleeding was discovered in 2009.

Since the operation, the muscles of the shoulder have been very tight, as well as the large neck muscle next to the scar. Neither stretching nor exercise has helped, or if it did, only for a day or two. My therapists have been cautious in handling the shoulder and neck treatment due to concerns about affecting the fluid bag. The left shoulder pulls the body forward and to the left. The tightness in the neck area may be one reason for the bleeding, although it is not evident on the MRI. A physiatrist now recommends the use of Botox injections to release the stiffness. I feel okay about using them on the shoulders, but are there any reasons not to use them on the neck muscles?

My SS symptoms (which started to deteriorate two years ago, even though the SS has spread widely in the brain) include partial hearing loss, ataxia, balance issues, and double vision in the left eye (which is alleviated three times with prism). I also experience bladder problems (where Botox has been used, although I have not yet decided whether to try it). I have been using Ferriprox since the beginning of June. I have just turned 70 years old.



>> Botox can be helpful in relieving muscle tension. The downside of Botox is that it may weaken those same muscles. In the bladder, Botox helps prevent spasms and leakage, but excessive use can result in urinary retention. The positive aspect of Botox is that it always wears off. It could take a few weeks to months, but it’s never permanent. So, I do encourage my patients to try Botox when experts suggest it could be helpful.

Very Important Question

Subject:

SS and Blood Thinners

MESSAGE:

Hello, I am a long time user of Warfarin. 22 years. I have had 2 pulmonary embolisms, 1998 & 2008. I had 2 brain bleeds in 2017. I also have 2 mutations that make me 6 to 8 times more likely to have clots. My doctors want me to switch to Eliquis. I plan to switch in a few weeks. I just wanted to know what Dr. Levy thinks? I have been to Cooper, Jefferson and Penn. Not one neurologist from the three ever had a patient with SS. I have an appointment at Johns Hopkins March 29th. Hopefully I can some answers and treatment. >> I wrote to you separately in an email. But to give some general advice to the community, I do not think there is much difference in the safety of different blood thinners in SS. Warfarin vs Eloquis and the others are all probably the same. They all make it more likely to bleed. But just like all medications, the risks need to be weighed against the benefit. For some people, stopping blood thinners will lead to blood clots and death; therefore, even if it worsens the SS, you have to continue taking them.

Subject:

WHAT WOULD YOU LIKE TO AS?

MESSAGE:

My 81-year-old mother has been diagnosed with superficial siderosis, with deposits found on her brainstem, cerebellum, and spinal cord. She has undergone a series of operations over the years for cervical spine stenosis, including the insertion of rods and a cage to stabilise her. We had always attributed her symptoms to arthritis, but it appears that her balance issues, pain, neuropathy, and deafness could be attributed to this condition.



In addition to this problem, my mother also has antiphospholipid syndrome (an autoimmune disorder that causes blood clots) and has been on warfarin for over 20 years. She has been falling a lot, and her doctors have always told her to go to the emergency room if she hits her head because of the warfarin. Every time this happens, we go, and she has a CT scan that has never shown the siderosis. It is my understanding that an MRI will pick it up - NOT a CT scan.



Considering that she has a history of siderosis plus being on a blood thinner, if she falls and hits her head, should she be getting a CT scan or MRI in the emergency room? Will a fall impact this condition in any way?



>> A CT scan is better for visualising fresh blood from a trauma, and it's super fast. So if your mum falls and bleeds in her head somewhere, a CT scan is what you want to get.


A CT scan won’t visualise superficial siderosis, which comprises old blood products deposited on the surface of the brain. Only an MRI can detect this. Superficial siderosis evolves slowly and can be monitored annually or biennially. There's no need for an MRI after falls.

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