I am desperate to find anyone familiar with this disease
Interested in more discussions like this? Go to the Brain & Nervous System group.
Hi, @alwaysgail – welcome to Mayo Clinic Connect. Understandable you'd like to find others familiar with your disease.
This information is from Mayo Clinic's medical professionals hub and is written for medical professionals, but I wanted to share this article with you on superficial siderosis https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/success-with-treating-some-superficial-siderosis-cases/mac-20431187
I'd like to introduce you to some members who participate in the Brain & Nervous System group on Mayo Clinic Connect @jakedduck1 @kariulrich @dawn_giacabazi @hopeful33250 @johnhans.
Wondering what types of symptoms you've been experiencing from this condition, @alwaysgail?
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So far I have experienced signficant hearing, snd smelling loss along with major balance issues.
Hi, @alwaysgail – will you share a bit more about how you came to visit the doctor and receive this diagnosis? What was prescribed so far for treating your superficial siderosis?
About 6 years ago I fell and had a brain MRI to rule out a brain bleed. Everything looked fine and I was released. A year ago I started experiencing severe balance problems and a neurologist indicated it was probably due to the Superficial Siderosis which showed up on a new MRI. The old MRI showed it was there in 2011. There is no active bleed so surgical intervention is not indicated. PT and assisted divise.
I am still hoping to hear from someone who is familiar with this disease. Alwaysgail
Hello, @alwaysgail – our moderation team too, hopes to attract more members who are familiar with superficial siderosis. We will be working on this. We'd love to connect you.
In the meantime, I'd love for you to meet @hopeful33250 @johnbishop @jenniferhunter, who have familiarity with neurologic conditions.
You mentioned that PT and assisted devices were recommended for you. How is the PT going? Are you finding it helpful?
Hello, @alwaysgail, I am not familiar with the condition but found that Mayo Clinic has experience treating it.
Success with treating some superficial siderosis cases
Did your doctors come up with a treatment plan?
@alwaysgail My experience is with a parent and helping rehab a traumatic brain injury, and I had surgery at Mayo for spinal cord compression in my neck which caused some slight issues and muscle atrophy that I"m working on in therapy.
I looked up some information on superficial siderosis and found a case where chelation was used to remove the iron deposits that are toxic to the brain and spinal cord and the patient improved and was able to walk more normally again. It didn't seem to be a permanent improvement. Normally, the blood brain barrier protects the brain, and only cerebral spinal fluid can contact the brain and spinal cord. Here's the link to the study.
Here's a link to a researcher at Johns Hopkins using chelation to try to remove the iron deposits.
I found another link relating this to cavernous malformations in the brain in a rare case. Those are a tangle of abnormal blood vessels where arteries and veins meet instead of being connected by tiny capillaries. These blood vessel malformations can be asymptomatic, or if they bleed slightly, it can cause a seizure. Most people who have these don't know it, and it's found when they are looking for something else on an MRI.
Here are some other links.
I am hoping to hear from anyone who has been diagnosed with this condition. This first showed up on an MRI in 2011 and has seriously affected my balance among other things. The silent bleed I am told.
Hello, @alwaysgail – I've merged your new post with this discussion you started previously on this topic.
If you'd ever like to find a discussion in which you've posted before to provide an update and continue the conversation, click on your avatar image in the upper right of any page on Connect (yours is a silhouette), and click on "My Profile" in the dropdown menu. If you scroll down on the "My Profile" page, you will see all the posts you have ever made on Connect.
How are you? Will you share more about the balance issues you have been experiencing? How they are affecting your daily living?
Hello, I have recently joined this site as I saw your post @alwaysgail . I also have superficial siderosis. I was diagnosed about 3 years ago.
Hello, @staffordpark – welcome to Mayo Clinic Connect. I'm sure that @alwaysgail will be happy to meet you and share experiences. What types of symptoms have you experienced from your superficial siderosis, staffordpark?
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