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Superficial Siderosis

Posted by alwaysgail @alwaysgail, Dec 15, 2018

I am desperate to find anyone familiar with this disease

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

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stevegrinstead | @stevegrinstead | Nov 27, 2021
In reply to @amandaa "Hi @herbertli, and welcome to Mayo Clinic Connect. Seven years is a long time to suffer..." + (show)
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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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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 | @stevegrinstead | Nov 27, 2021
In reply to @staffordpark "Hi @lisalucier , it’s early days really so hard to tell. On mri there has been..." + (show)
Profile picture for staffordpark @staffordpark

Hi @lisalucier , it’s early days really so hard to tell. On mri there has been no improvement, but no worse so that is good. I have had a visual evoked potentials test before starting chelation and after 6 months and that has improved dramatically. I have just been approved for funding for a second year of chelation, so the hospital must believe it’s worth pursuing. I’m hopeful there will be a visual improvement on mri after the second year

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I have SS also. I was wondering how did you get approved for funding?

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stevegrinstead | @stevegrinstead | Nov 27, 2021

Try Dr. Kumar and Dr Marsh Mayo Clinic Minnesota.

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John, Volunteer Mentor | @johnbishop | Nov 27, 2021
In reply to @stevegrinstead "Hi Amanda I was operated on by Dr. Marsh to sew up a dura leak. Go..." + (show)
Profile picture for stevegrinstead @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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stevegrinstead | @stevegrinstead | Nov 27, 2021
In reply to @herbertli "Hi, I have been recently diagnosed with superficial siderosis in the spinal cord and back of..." + (show)
Profile picture for herbertli @herbertli

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

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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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kygirl58 | @kygirl58 | May 31, 2022
In reply to @herbertli "Hi, I have been recently diagnosed with superficial siderosis in the spinal cord and back of..." + (show)
Profile picture for herbertli @herbertli

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

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Does anyone else here have superficial Siderosis?

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lrg | @lrg | Jun 1, 2022
In reply to @kygirl58 "Does anyone else here have superficial Siderosis?" + (show)
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Does anyone else here have superficial Siderosis?

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what is that exactly?

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stevegrinstead | @stevegrinstead | Jun 1, 2022
In reply to @kygirl58 "Does anyone else here have superficial Siderosis?" + (show)
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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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stevegrinstead | @stevegrinstead | Jun 1, 2022
In reply to @lrg "what is that exactly?" + (show)
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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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Mentor
John, Volunteer Mentor | @johnbishop | Jun 1, 2022
In reply to @stevegrinstead "Yes. I do. Mayo Clinic/Steve GRINSTEAD. Also Brain and Life/Steve GRINSTEAD. Please also go to Living..." + (show)
Profile picture for stevegrinstead @stevegrinstead

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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Hi Steve - We removed your personal email address and telephone number from your message above. We recommend not posting personal contact information in the public forum. You can use the secure private message function to exchange contact information with another member.

You can exchange contact information with @kygirl58 and other members by clicking on their member name to go to their profile then click on the Send private message link. I thought I would share the link you suggested in your post above.

Living With Your Superficial Siderosis: https://livingwithss.com/

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