Steve, I am on the SS Facebook pages and we have talked on there before. Thought I’d see if there was anyone following SS on here. The more we can identify, the more support we might get!
Bena DeHaven Travis
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.
@stevegrinstead, I don't have Superficial siderosis however in my quest for answers to an entirely different health issue I recalled flavinoids for iron overload from transfusions. I don't know if you have already investigated flavonoids so I present them for you to determine their appropriateness with Superficial siderosis. The frontiersin links offer information on a variety of flavinoids whereas biomedcentral focuses on quercetin. All flavonoids including quercetin have low absorption and benefit from enhansed absorption. For example, utilizing liposomal delivery overcomes many absorption barriers. Keep this in mind as you review the material. Always consult your health care provider before using any supplement.
Hello @kygirl58. I see @johnbishop has kindly welcomed you to Connect! I wanted to let you know that I found another discussion on superficial siderosis so have moved your post there to join members such as @herbertli who started the discussion as well as @stevegrinstead and @jposewitz who have both shared in the past.
Can you share a bit more about your experience with superficial siderosis and what questions you have or what support you may need?
Hello @kygirl58. I see @johnbishop has kindly welcomed you to Connect! I wanted to let you know that I found another discussion on superficial siderosis so have moved your post there to join members such as @herbertli who started the discussion as well as @stevegrinstead and @jposewitz who have both shared in the past.
Can you share a bit more about your experience with superficial siderosis and what questions you have or what support you may need?
My SS was found about five years ago, incidentally on a head and neck mri done because of headaches and neck pain. The local neurosurgeon knew enough about it to identify it but nothing else. He sent me to a “supposed” specialist at a university hospital. He also identified it as SS but neither of them knew to look for a cause even though I have never had a head injury.
I ended up doing my own research and with the help from folks on the SS Facebook page, I felt sure I had a spinal leak. I sent my scans to Mayo to Dr Neeraj Kumar and he immediately saw the leak that the others had missed. He had me come to Mayo for further testing and found a large leak at T-4 and intercranial hypotension. He set me up with Dr John Atkinson and I soon had surgery to repair the tear in my dural lining, thereby stopping more iron deposits. Their imaging stated that I had iron deposits on my brain, 7th & 8th cranial nerves, cervical and thoracic spine with substantial damage to my spine.
So far my hearing is holding steady but my balance is poor and have severe fatigue at times.
I wanted to post on here in case someone was like me and had a diagnosis of SS but their doctors didn’t know to search for a cause. At this time I have chosen to not take Ferriprox to try to remove the deposits.
My SS was found about five years ago, incidentally on a head and neck mri done because of headaches and neck pain. The local neurosurgeon knew enough about it to identify it but nothing else. He sent me to a “supposed” specialist at a university hospital. He also identified it as SS but neither of them knew to look for a cause even though I have never had a head injury.
I ended up doing my own research and with the help from folks on the SS Facebook page, I felt sure I had a spinal leak. I sent my scans to Mayo to Dr Neeraj Kumar and he immediately saw the leak that the others had missed. He had me come to Mayo for further testing and found a large leak at T-4 and intercranial hypotension. He set me up with Dr John Atkinson and I soon had surgery to repair the tear in my dural lining, thereby stopping more iron deposits. Their imaging stated that I had iron deposits on my brain, 7th & 8th cranial nerves, cervical and thoracic spine with substantial damage to my spine.
So far my hearing is holding steady but my balance is poor and have severe fatigue at times.
I wanted to post on here in case someone was like me and had a diagnosis of SS but their doctors didn’t know to search for a cause. At this time I have chosen to not take Ferriprox to try to remove the deposits.
@kygirl58 how wonderful of you to share your experience so that others may find the answers they are looking for as well.
It was heartwarming reading that a Mayo doctor was able to find the leak that went unnoticed by others. The level of care here is something very special and I am so glad you found some answers despite having balance and fatigue issues at times.
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.
@kygirl58 how wonderful of you to share your experience so that others may find the answers they are looking for as well.
It was heartwarming reading that a Mayo doctor was able to find the leak that went unnoticed by others. The level of care here is something very special and I am so glad you found some answers despite having balance and fatigue issues at times.
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Steve, I am on the SS Facebook pages and we have talked on there before. Thought I’d see if there was anyone following SS on here. The more we can identify, the more support we might get!
Bena DeHaven Travis
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2 Reactions@stevegrinstead, I don't have Superficial siderosis however in my quest for answers to an entirely different health issue I recalled flavinoids for iron overload from transfusions. I don't know if you have already investigated flavonoids so I present them for you to determine their appropriateness with Superficial siderosis. The frontiersin links offer information on a variety of flavinoids whereas biomedcentral focuses on quercetin. All flavonoids including quercetin have low absorption and benefit from enhansed absorption. For example, utilizing liposomal delivery overcomes many absorption barriers. Keep this in mind as you review the material. Always consult your health care provider before using any supplement.
https://www.frontiersin.org/articles/10.3389/fcell.2021.685364/full
https://jnanobiotechnology.biomedcentral.com/articles/10.1186/s12951-021-01059-0
Hello @kygirl58. I see @johnbishop has kindly welcomed you to Connect! I wanted to let you know that I found another discussion on superficial siderosis so have moved your post there to join members such as @herbertli who started the discussion as well as @stevegrinstead and @jposewitz who have both shared in the past.
Can you share a bit more about your experience with superficial siderosis and what questions you have or what support you may need?
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Like -
Helpful -
Hug
4 ReactionsMy SS was found about five years ago, incidentally on a head and neck mri done because of headaches and neck pain. The local neurosurgeon knew enough about it to identify it but nothing else. He sent me to a “supposed” specialist at a university hospital. He also identified it as SS but neither of them knew to look for a cause even though I have never had a head injury.
I ended up doing my own research and with the help from folks on the SS Facebook page, I felt sure I had a spinal leak. I sent my scans to Mayo to Dr Neeraj Kumar and he immediately saw the leak that the others had missed. He had me come to Mayo for further testing and found a large leak at T-4 and intercranial hypotension. He set me up with Dr John Atkinson and I soon had surgery to repair the tear in my dural lining, thereby stopping more iron deposits. Their imaging stated that I had iron deposits on my brain, 7th & 8th cranial nerves, cervical and thoracic spine with substantial damage to my spine.
So far my hearing is holding steady but my balance is poor and have severe fatigue at times.
I wanted to post on here in case someone was like me and had a diagnosis of SS but their doctors didn’t know to search for a cause. At this time I have chosen to not take Ferriprox to try to remove the deposits.
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Like -
Helpful -
Hug
2 Reactions@kygirl58 how wonderful of you to share your experience so that others may find the answers they are looking for as well.
It was heartwarming reading that a Mayo doctor was able to find the leak that went unnoticed by others. The level of care here is something very special and I am so glad you found some answers despite having balance and fatigue issues at times.
How are you working through those challenges?
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2 Reactionsthanks for the explanation. Prayers for you🙏🏻
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1 ReactionI am doing the best that I can. I have no choice but to keep going