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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 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.

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.

SUBJECT

Ibuprofen

MESSAGE

I read a great deal of the Q/A, and ask if ibuprofen is ok for headaches. My husband is newly diagnosed, has extensive SS in the cerebellum and is being told not to take ibuprofen. Other prescribed meds are not working for him. Codeine just knocks him out and he does not like that.  He says the 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 would make any internal bleeding from SS worse. Surgeons ask you to avoid ibuprofen before a surgery to avoid bleeding complications. But no one has tested ibuprofen in SS, I’m not sure it’s a fair extrapolation. Plus, every medication decision is a balance between benefits and side effects – so if ibuprofen is the only thing that helps, it might be the best option.

 

 

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 SS related, he's also had 6 strokes as a child.

 

>> It’s possible that this could be related to SS. If SS involves the language centers 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

Use of Botox to release strong stiffness of shoulder and neck muscles

WHAT WOULD YOU LIKE TO AS

Dear Dr. Levy,

Use of Botox has come up.

I had brain surgery, meningioma, in 2006. A fluid bag developed into the place of the benign tumour. Bleeding was discovered in 2009. 

Since the operation muscles of the shoulder have been very tight, also the large neck muscle next to the scar. No stretching, exercise have helped, or only for a day or two. My therapists have been cautious to handle the shoulder and neck treatment due to the concern of affecting the fluid bag. The left shoulder pulls the body forward and to the left. The tightness of the neck area may be one reason for the bleeding. MRI does not show it, though. A physiatrist now recommends the use of Botox shots to release the stiffness. On the shoulders I feel ok, but are there any reasons, not to take it to the neck muscles?

My SS symptoms (started to deteriorate two years ago even though the SS has spread very widely in the brain) are partial hearing loss, ataxia and balance, double vision in the left eye (3 times of prism helps), bladder problems (here also Botox has been used, I have not yet decided, if I should try). I have used Ferriprox since beginning of June. I just turned 70 years.

 

>> Botox can be helpful in relieving muscle tension. The bad part of botox is that it may make those same muscles weaker. In the bladder, botox helps prevent spasms and leaking but too much leads to urinary retention. The good thing about botox is that is 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 Botox experts suggest it could be helpful.

 

 

SUBJECT

More information about the published Ferriprox

MESSAGE

Good afternoon, I would like to receive the results of the tests with the drug ferriprox that are carried out with SS patients. Reason: I was recently diagnosed with this disease, and here in Brazil there is no knowledge for treatment with iron chelators, so I would like to use the results of these tests to ask the health plan for coverage of the drug. 

Thank you very much.

 

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

 

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

 

This article is free of charge to download and share. 

 

 

SUBJECT

Superficial  hemersiderosis

MESSAGE

I've had the phyzer vaccine in January 2021 since then 3 weeks later I couldn't move my right arm it was frozen I could mot move it at all ... since then I very had a lot of  things  happen I had mri scan and SS was diagnosed.  They think the vaccine caused an allergy for me.am I able to fly with SS.

 

>> This is an unusual way to get a diagnosis of SS. I suspect it had nothing to do with the Pfizer shot or the frozen shoulder. But if it led to an MRI, at least now you know about the SS and can try to address it before it causes symptoms. There are different types of superficial siderosis – including both harmless and harmful types so it’s important get some expert advice in your case. Yes, it’s safe to fly with SS.

 

 

SUBJECT

Very Important Question

WHAT WOULD YOU LIKE TO AS

My 81 year old mother was diagnosed with superficial siderosis with deposits on her brain stem, cerebellum and spinal cord. Shes had a series of operations over the years for cervical spine stenosis, including rods and a cage put in to stabilize her.  We always thought her symptoms were because of arthritis, but it seems as if her balance issues, pain, neuropathy, and her deafness can be from this.

 

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

 

Considering that she has a history of siderosis plus 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 visualizing fresh blood from a trauma. And it’s super fast. So if your mom falls and bleeds in her head somewhere, a CT scan is what you want to get. 

A CT scan won’t visualize the superficial siderosis, which is old blood products deposited on the surface of the brain. Only an MRI can see that. Superficial siderosis evolves slowly and can be followed yearly or every other year. No need to get an MRI with falls. 

 

 

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.

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