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.
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
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:
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?
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
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.
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
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.
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.
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.
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.
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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
I have SS also. I was wondering how did you get approved for funding?
Try Dr. Kumar and Dr Marsh Mayo Clinic Minnesota.
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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Like -
Helpful -
Hug
2 ReactionsSS 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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Like -
Helpful -
Hug
2 ReactionsDoes anyone else here have superficial Siderosis?
what is that exactly?
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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Like -
Helpful -
Hug
1 ReactionIt 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.
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/