Hi @lisalucier , I’m going ok on the chelation. I’m struggling a little bit at the moment with my iron levels being too low. I’ve been anaemic for a while because of the chelation, but now it’s getting just that bit too low. So I’m trying to eat lots of steak and spinach to boost it up, as otherwise I need to cut back on the medication which I don’t want to do. Balance is ok, I still struggle and my neuro can pick up on it, but to an untrained eye you would struggle to see it. Vestibular rehab and pilatesmade a huge difference in helping regain my balance
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
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
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
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
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, 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
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)?
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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Hi @lisalucier , I’m going ok on the chelation. I’m struggling a little bit at the moment with my iron levels being too low. I’ve been anaemic for a while because of the chelation, but now it’s getting just that bit too low. So I’m trying to eat lots of steak and spinach to boost it up, as otherwise I need to cut back on the medication which I don’t want to do. Balance is ok, I still struggle and my neuro can pick up on it, but to an untrained eye you would struggle to see it. Vestibular rehab and pilatesmade a huge difference in helping regain my balance
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1 ReactionHi, 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
@herbertli
I'm curious about what treatment they recommend if you wouldn’t mind sharing?
Jake
I am still looking for a professional in siderosis to see treatment options ....
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.
I was Diagnosed in December of 2018. Had surgery at mayo in April of 2019, and started Ferriprox in September of 2019. What can I help you with?
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)?
Hi Gail. I have SS also.
I have SS
Hi Hurbert I was operated on by Dr. Marsh Mayo Clinic Minnesota.