After Your Diagnosis

Steps For Help

IMPRESSION: Diffusely abnormal decreased signal of the meningeal surfaces more pronounced about the brainstem, cerebellum, and basilar cisterns. There appears to be mild associated cerebellar atrophy. The MR findings and the clinical report of dizziness and hearing loss are consistent with superficial siderosis. The abnormal decreased signal is observed primarily on the T2-weighted series correlating with the pial and ependymal surfaces most pronounced about the brainstem, basilar cisterns, and cerebellum. Findings correlate with hemosiderin deposition in a pattern of superficial siderosis. Etiology for superficial siderosis is presumed to include episodes of subarachnoid hemorrhage, although not always clinically evident. Sensorineural hearing loss and cerebellar findings, by a report, often present symptoms and appear to correlate in this case.

SS Patients’ Radiology Report
find an active bleed

Do You Have An Active Bleed?

Your first step after diagnosis should be to find out if you have an ongoing bleed. If your neurologist suspects your bleed is still active, they may perform a lumbar puncture to help determine if there is still blood in your spinal fluid. Be aware it may not work if your bleed is intermittent. Most neurologists will refer you to a neurosurgeon for this step. A CT Myelogram is now the preferred method to locate an active bleed from a dural defect. If a bleed source is located, your neurosurgeon will review your options for closure.

Be Prepared To Travel

In our case, there was a 12-month waitlist before a local neurologist would accept a new patient. Six months later, we finally found Gary, a neurologist willing to take a superficial siderosis patient. Although her office was two hours from our home, Dr. Allison Hennigan was a kind and, most importantly, interested physician. Finding an interested neurologist is a critical first step. Too often, patients are forced to accept care from a doctor who believes nothing can be done.

Decoding Superficial Siderosis 15

The bottom line is it is challenging to find a neurologist who is both willing to accept a superficial siderosis patient and prepared to research a care plan.

Our Provider Directory is a searchable list of neurologists and neurosurgeons from around the world. Each one has had a superficial siderosis patient under their care. We encourage our SS community to send us their physicians’ information for inclusion in the directory for a very important reason. If a doctor has multiple patients with the same disorder it provides a strong incentive to learn everything they can about this disorder. Our goal is to expand this into a knowledgeable provider network. We can also help your physician connect with a superficial siderosis specialist for advice.

Repairing A Dural Defect

If your MRI report states superficial siderosis is present, then you have hemosiderin deposits present. The Mayo Clinic in Minnesota is considered the most experienced facility with superficial siderosis bleed identification and has excellent results with complex bleed repairs. Dr. Kumar is considered the leading neurosurgical superficial siderosis expert in the United States.

Cedars-Sinai Hospital, Los Angeles CA, and Oschner-LSU Shreveport, LA also has excellent neurosurgical departments that have experience with closing dural defects. An active bleed can be very hard to pinpoint, especially if the source is not obvious. While some SS patients choose to travel for a surgical bleed repair it should be possible to find an experienced neurosurgeon in your local area.

Unfortunately, the next step is where professional opinions diverge. Many neurosurgeons still believe if an active bleed is repaired the progression will stop. While it is extremely important to your care plan to have the repair completed if possible, the existing hemosiderin deposits will continue to be problematic. The neurotoxic effects from circulating free-iron and oxidative stress neural damage will continue the progression. Unfortunately, patients will continue to decline slowly as long as the hemosiderin remains in place.

Considering Chelation

We have no idea who first decided to try and remove the hemosiderin deposits. Early chelation trials must have failed. The problem? No drug could cross the blood-brain barrier. Dr. Michael Levy was a member of the Johns Hopkins research team conducting a 90-day pilot study testing the safety and efficacy of chelation as a therapeutic intervention. This lipid-soluble iron chelator crossed the blood-brain barrier in all ten patients. The results of this early study were promising enough to expand the research with additional candidates. This comprehensive study was published on December 28, 2017. You may read and download a copy of this study on our website.

To all SS patients on chelation or thinking about chelation, I want to take this opportunity to clear a misconception about the expectation of this drug. This iron chelator, a small molecule that binds iron. The unique property of of this formula that makes it suitable for SS is its ability to dissolve into the spinal fluid and chelate iron on the surface of the brain and spinal cord. While chelating the iron in an SS patient, it should not make the patient feel better in any way (except psychologically maybe?). Remember, symptoms from SS are due to damage to the outer layer of the brain due to iron toxicity from the adjacent siderosis layer. As long as the siderosis is present, the damage it causes continues even while the iron is being chelated. SS patients should expect to continue to progress in their SS disease until the iron is gone and healing can start. In my experience, it takes two years in most patients to begin to see reductions in the siderosis extent by MRI. Those brain areas that have been cleared can begin to heal while neighboring siderotic brain tissue is being damaged. Since I’ve started using chelation therapy in 2010 (the majority since 2012 when the drug was FDA approved in the US), only a few patients have managed to clear all or most of their iron, and in those patients, we saw the most clinical improvement.

Dr. Michael Levy, May 19, 2015 post to the Facebook support group

Chelation therapy was still considered a very new treatment option that had strict requirements of its own. Our neurosurgeon suggested we needed a neurologist to oversee treatment. Our PCP was willing to begin chelation once we discovered finding a neurologist was delayed, but decided to refer us to a hematologist.

In the end, we found some very engaged physicians. That’s what you need to look for in a doctor. Our hematologist and neurologist both emailed Dr. Michael Levy for advice. Dr. Levy is considered the foremost superficial siderosis neurologist and researcher in the United States. He freely gives his time to answer any physician who contacts him. He also accepts long-distance patients for care at the Superficial Siderosis Clinic and Research Laboratory, Massachusetts General Hospital. Patients are required to travel to Massachusetts at least once for an in-person appointment.

If your doctor says there are no options, find a new one. If your doctor says nothing to worry about, find a new one. Never settle.


  1. 3 years ago I was diagnosed with Superficial Siderosis. I have foggy days where I feel off. I get dizzy a lot. My balance is messed up, and my knees buckle. I have headaches with an occasional migraine. My memory is not very good, I have to be really careful with following recipes because I loose track of the amount I’ve put in and sometimes have to start over. I am 41 and I don’t think that should be an issue at 41.

    I went to see a Neurologist in September this year and she doesn’t think it is superficial Siderosis because my MRI didn’t show a progression. Does that mean I don’t have it? Or do I have it but the progression is in the symptoms I feel. I’ve been trying to do what the Neurologist said to do to see if there’s another cause, but deep inside of me I feel like my symptoms are because of superficial Siderosis. Does anyone have any suggestions? I have had 3 MRI’s, and 1 MRA since 2020 but never any imaging of my spine- is that something I should have had done?

  2. Hi! I’m new. Diagnosed 6/21/23. Can anyone recommend any specialists in Indiana? I’m in NW Indiana, but can’t go to Chicago because I’m on Medicaid. I’m told IU has an excellent Neurology department, but I’m not finding any “good” contact information. Thank you!

  3. I just had an MRA for an aneurysm that was found during an MRI for another condition. This is all new to me. The radiologist that did the report on the MRA said he found subtle superficial siderosis along the bilateral cerebral and cerebella hemispheres with more prominent hemosiderin staining along the right occipital lobe.
    I have yet to consult with the neuroradiologist who ordered the MRA. That is coming up soon. I also will be seeing the UW aneursym clinic here in Washington state for a 8.3 mm aneurysm.
    My report says subtle is that a good thing?
    I did have a hearing test this year and found that I have lost low tone sensory hearing. I am not sure if that is new or if I have always had that hearing loss. I don’t notice it.
    My balance is good but maybe not as good as it used to be? I chalked that up to now being 72 years old. I am a martial artist so my balance has been developed for years. I had to close my school about 10 years ago because an old injury received during a sparing match caught up with me. I needed a 3 level cervical disc fusion. I have had several concussions. Seems trauma could be the culprit in my case.
    I am glad I found this website. I appreciate all that is shared.

  4. J. C. 
    I have recently been diagnosed with Superficial Siderosis after I lost hearing in my left ear. I have been suffering with Ataxia & what I was told by my ENT was called Septum Eruption (basically a hole developed in my septum after about 4 years of dry mouth and nose-as long as I have had Ataxia issues too)

  5. Can anyone help me? I have been diagnosed with SS, I have had 2 MRIs and I’m waiting to see the neurologist again, it may be months away (Public health system here in Melbourne Australia). 
    My gait is getting worse by the month. 
    My tittininus is getting worse and my hearing is failing me. I read there are drugs available to breakdown the iron deposits? Do we have this as an option in Australia? What’s likely to happen to me? I read total deafness??? Gait will keep on getting much worse? 

  6. Hello,
    I was told that I have SS in January 2022. My hearing was affected along with my balance. I had 6 MRI’s to find the bleed. Nothing showed. I also had a XA Cervicocerebral Arteriogram. It showed no active bleed. I am a long time user of Warfarin for Pulmonary Embolisms. 22 Years. I can not find a neurologist that ever dealt with SS. I can’t even get my doctors to agree on warfarin removal. Any suggestions ?

  7. Hello,
    I went to my general physician because my hearing was poor and I stumbled and wavered as I walked. My ENT said my hearing loss was abnormal and ordered an MRI. . On Nov 23, 2021 the results came back with”extensive Superficial Siderosis ” Needless to say I had no clue what it meant and I began scouring the internet and was in disbelief.
    Last Wednesday I met with a neuro surgeon he has now set up a number of MRIs and CT scans. He also said he could repair if he found anything but he cannot help with SS.. I won’t have any answers from him till Jan 12, 2022.
    Do I wait to contact a doctor who specializes with SS or go ahead and try to get an appt.?
    Geri (62 years old)
    York, PA

    1. Hi Geri, You may contact Dr. Levi at Mass General for care or find a local neurologist. If you choose Dr. Levi, you will have to make one in-person visit for an initial evaluation, and then you would enter a remote care plan, if I understand the process correctly. Dr. Levi is also glad to consult with an individual’s neurologist on a care plan if you prefer to have a neurologist more local to your area.

  8. I was told by Mayo Clinic that my operation would halt the progression of SS. Now I learn that the operation only stops the bleed and because the iron deposits are still there the SS will continue. My wife committed “criminal spousal abandonment,” and divorced me. Now I am alone and can’t afford Ferriprox. Any suggestions?

    1. One might hope you have become vegetarian, because, in Hepatitis C patients, they’ve shown a low-iron diet enhances the iron reduction treatment, when phlebotomy is used.
      Somewhat proving, diet has an effect on iron levels in storage.
      Unleavened bread contains a high amount of phytate, an iron chelator.
      “Soy protein with native phytate significantly reduced tHcy (P = 0.017), transferrin saturation (P = 0.027), and ferritin (P = 0.029), whereas soy protein with native isoflavones had no effect on any variables.”

    2. Hi Steve, you might consider the upcoming clinical trial. It is still wading through the regulatory procedure, but it will open for enrollment in the fall. Visit if you are not already registered. When enrollment begins, The patient registry will notify you. For trial details, visit
      “Brief Summary:
      A remotely administered study, non-randomized, non-blinded, controlled parallel assignment phase 2 trial to determine if oral inosine or inositol hexaphosphate will provide an effective long-term therapy to combat or slow neural damage progression either concurrently with existing iron chelation therapy or during the natural course of the disorder. Clinical changes in hearing, balance, and mobility, and cognition will be assessed for 36 months through patient-reported outcomes of study assigned assessments.”

  9. Just got my diagnosis. Any recommendations for a care team in the Chicago area? Or is it worth it to travel somewhere else?

    1. Kate, I’m in the Chicago area, also. Have you found someone, yet? I have an appointment with Dr. Bernstein at Northwestern and one with Dr. Levy at Mass General.

      1. Have you met with Dr. Levy yet at Mass General? I am working on trying to get an appointment with my daughter but not luck yet. 

  10. For me, it started with my left arm with no feeling/movement. Thinking I had a small stroke my Dr. ordered an MRI of the brain. The report came back with no stroke but SS. A second MRI was ordered of the spine and the neurologist sent it to a neurosurgeon. The Nurosergion kicked it back and said I need a CT scan. After dye was injected a spinal fluid leak was discovered in the upper spine area. My Nuerologist recommended either a blood patch or surgery and advised to start with the blood patch. My question, where do I go from here?

    1. Hi William, I’ve sent you a .pdf that contains an explanation on the three types of recommendations for dural defect repair. I’m sorry it took so long to respond but we were in the middle of making this new info packet and I wanted to be able to share it with you.

  11. Hi my name is Heidi and have been diagnosed with Siderosis. I have spent much of my young life with many physical problems from birth. Born with scoliosis, and neurofibromatosis 1. I had three back surgeries before the age of 14. Lost my mother at that age. Talk about hating school is just the start. I worked full time at a nursing home just to prove to myself and others, can’t keep this girl down. My last back surgery was at the age 36. That did it. Could no longer do the job I loved. In 2008 they notice something on my MRI’s but never said anything. In 2017 I started falling. First broke my leg, year later my foot, now this year I broke my wrist. In about 2018 is when I think they diagnosed me with SS. So much anger because nothing was ever told me. Now I need this medication and can’t afford it. Finding this site on facebook was so helpful. Will be talking with Dr. from Mayo in about two weeks. So looking forward to this. Best of luck to all. May God help us all.

    1. Hi Heidi, I’m glad you were able to make arrangements with the Mayo Clinic. They are excellent! Many of the SS patients are in the same boat as you in regards to the out of pocket cost of deferiprone. There were a few organizations who helped with copay but they often run out of funding. I know I mentioned the generic formulation becoming available next year but it’s hard to wait that long.

  12. Hemosiderin in superficial siderosis patients forms when your body attempts to protect itself from the free-iron released when individual blood cells break down. In a neuroprotective response, astrocytes release ferritin proteins to attach and surround the free-iron molecules. The resulting ferritin and free-iron product is hemosiderin. Since hemosiderin is not soluble, gravity pulls it to the subpial surfaces where it attaches to the pia mater. While hemosiderin does store excess iron for later use in other areas of the body a build-up in the brain and spine CNS cause neural tissue toxicity when free-iron molecules eventually escape.

  13. Hi my mother recently received this as a diagnosis after several MRI s they believe from being or receiving a hit on the top of her head at some stage long ago from the results … she has no current bleeds .. and they seem to have stalled as in what to do with her?? She lives in Tasmania, Australia

    1. “her gait returned to normal”

      “Regression of Symptoms After Selective Iron Chelation Therapy in a Case of Neurodegeneration With Brain Iron Accumulation”

    2. Hi Leah, we know of another case of superficial siderosis in Tasmania. I will reach out and see if they would share their physician and treatment plan with you.

  14. I have SS and am looking for a doctor to help me I have gone completely deaf and have major balance issues I have gone to using a walker and cane because I fall down a lot Most doctors don’t even know what it is I really need to find advice on what steps to take in helping me with all these problems I live in Michigan and want to understand this I would like to talk with others that have it as well My tastes and smelling has pretty much gone as well I taste iron in my mouth sometimes is this common Major headaches dizziness pain nausea the list goes Help Please ♥️

    1. Hi Dawn, the SS Facebook group has several members who live in Michigan. Most of them are under care of doctors at the University of Michigan.

  15. I am wondering if there is a network of people or Doctors
    My mother in law was diagnosed with SS years ago….we are looking for information support…anything we can do help her I don’t even know where to start
    Living in Canada there is not a lot of people who have it

  16. Still processing my diagnosis, hope to hear results of lumbar tap today. Thankful to find this site!

  17. They have shown the body shunts iron from tissues to make new red blood cells, so in theory, slow calibrated phlebotomies, less than the usual amounts taken at a regular blood donation, would cause iron in those tissues which do not require iron, to be released more easily, to make red blood cells. Is phlebotomy used on all patients as a treatment?

    1. A person with SS will have solid iron mass build up on their brain and spinal cord. It develops over time from blood infiltrating the spinal fluid. This blood is eventually absorbed, leaving a hemosideron residue. This leftover residue is what causes the damage (picture rust build-up). Phlebotomy is used successfully to control iron overload in the blood stream but will not remove the hemosideron. The only successful therapies are those that will cross the blood-brain barrier.

      1. Hemosiderin is the long term storage form of iron which is accessed when iron is needed to make red blood cells.

        1. Hemosiderin in superficial siderosis patients forms when your body attempts to protect itself from the free-iron released when individual blood cells break down. In a neuroprotective response, astrocytes release ferritin proteins to attach and surround the free-iron molecules. The resulting ferritin and free-iron product is hemosiderin. Since hemosiderin is not soluble, gravity pulls it to the subpial surfaces where it attaches to the pia mater. While hemosiderin does store excess iron for later use in other areas of the body a build-up in the brain and spine CNS cause neural tissue toxicity when free-iron molecules eventually escape.

          1. “Deferiprone Reduces Hemosiderin Deposits in the Brain of a Patient with Superficial Siderosis”

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