superficial siderosis

Posted by herbertli @herbertli, Mar 27, 2021

Hi, I have been recently diagnosed with superficial siderosis in the spinal cord and back of brain. Also have some spinal cysts, and possible pseudomeningocele. This was discovered with MRI that I did because of a deteriorating and worsening hearing loss and balance problems over the past 7 years.
Looking for advise how to stop this deteriorating symptoms before I get totally deaf….
Would help to hear anybody that went thought treatment or surgery on this, and with whom.
Thanks,
Herbert

Interested in more discussions like this? Go to the Brain & Nervous System group.

@herbertli
I'm curious about what treatment they recommend if you wouldn’t mind sharing?
Jake

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I am still looking for a professional in siderosis to see treatment options ….

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Hi @herbertli, and welcome to Mayo Clinic Connect. Seven years is a long time to suffer with not knowing what is wrong. This information is from Mayo Clinic's medical professionals hub and 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 Connect including @jakedduck1 who posted above! @dawn_giacabazi and @hopeful33250

Who ordered your MRI and read it? Did they not recommend anyone? Also, are you close to any of the Mayo Clinic campuses in Minnesota, Arizona or Florida? I can provide you a list of doctors if you let me know.

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Hello @jposewitz, Welcome to Connect. I noticed your post in an older discussion on Superficial Siderosis which I'm not sure has any active members following the discussion. @herbertli, started this discussion – superficial siderosis and I'm sure would like to hear of your experience and treatment. You mentioned being diagnosed in 2018 and having surgery at Mayo in 2019 and started Ferriprox in September of 2019 and that you would be willing to answer any questions that someone may have on your experience with superficial siderosis.

Do you have any side effects from the Ferriprox® (Deferiprone)?

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Hi Hurbert I was operated on by Dr. Marsh Mayo Clinic Minnesota.

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@amandaa

Hi @herbertli, and welcome to Mayo Clinic Connect. Seven years is a long time to suffer with not knowing what is wrong. This information is from Mayo Clinic's medical professionals hub and 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 Connect including @jakedduck1 who posted above! @dawn_giacabazi and @hopeful33250

Who ordered your MRI and read it? Did they not recommend anyone? Also, are you close to any of the Mayo Clinic campuses in Minnesota, Arizona or Florida? I can provide you a list of doctors if you let me know.

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Hi Amanda I was operated on by Dr. Marsh to sew up a dura leak. Go to Mayo Clinic/Steve Grinstead for my story. Thank you

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@stevegrinstead

Hi Amanda I was operated on by Dr. Marsh to sew up a dura leak. Go to Mayo Clinic/Steve Grinstead for my story. Thank you

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Welcome Steve @stevegrinstead, I see that you are new to Connect today and are trying to Connect with other members with Superficial Siderosis. I saw in one of your posts in another discussion that you mentioned your Mayo Clinic patient story on Sharing Mayo Clinic. I thought I would share a link to your story here:

A Leak in His Brain, Troubling Symptoms, and Finally an Elusive Fix
https://sharing.mayoclinic.org/2017/05/25/fixing-a-tiny-leak-makes-a-big-difference-for-steve-grinstead/

I would also like to welcome @jposewitz who recently joined Connect was diagnosed in 2018, had surgery at Mayo in April 2019, and started Ferriprox in September of 2019.

I'm tagging @staffordpark and @herbertli who have posted in the discussion to see if they have any questions for either of you.

@stevegrinstead and @jposewitz can you share a little more about your diagnosis and any tips or suggestions you want others to know?

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SS is awful. I have 29 symptoms. My advice is if you have a active bleed you must get it fixed right away. Mayo Clinic can actually locate a bleed and fix it. If you have a active bleed and you don’t get it fixed you will get much worse.

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Does anyone else here have superficial Siderosis?

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@kygirl58

Does anyone else here have superficial Siderosis?

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what is that exactly?

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@kygirl58

Does anyone else here have superficial Siderosis?

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Yes. I do. Mayo Clinic/Steve GRINSTEAD. Also Brain and Life/Steve GRINSTEAD. Please also go to Living with Superficial siderosis website. You can contact me.

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@lrg

what is that exactly?

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It is damage in the central nervous system from iron deposits left from blood leaking in through a hole in your dura or a one time brain injury. Go to google.

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