I have been taking Ferriprox for 7 years and now my ferritin level is at 16 ng/ml for the first time. At the beginning it was 290 ng/ml. As the rest of my body also needs iron, I should now take a break from taking it. Where does Dr Levy set the limit for ferritin?




I do not use ferritin to set a limit for when to stop deferiprone. I measure ferritin levels over time to make sure the deferiprone is working as indicated by a slowly declining value over time. The best measure of iron deficiency in the body is anemia. I check blood counts in my patients monthly which cover both immune cell and red blood cell counts. In most people, worsening anemia becomes evident over many years of Ferriprox treatment, and that is what limits the time and dose of Ferriprox.

I am a 73 year old male in good physical condition. Diagnosed with SS and Intracranial Hypotension in January 2024. Current symptoms are , Bilateral deftness and bladder issues( Urgency and Frequency) Leak detected through a series of Myelograms at T12. Surgery in September 2024 has failed to seal the leak considered by my Neurosurgeon to be small in size. MRI History shows the condition existed in 2012. A more invasive surgery is proposed and a decision to progress is now what I must face . My dilemma is ..given my current manageable conditions and the risk factors involved in the proposed surgery should I proceed. My question . What data is available that shows the rate of change over time and the onset of further complications e.g loss of balance , etc
SS is due to iron toxicity from long standing iron deposits. New iron deposits from fresh bleeds will not impact your function immediately. Even if you were to stop the bleeding now, you would still progress in your neurological condition because stopping the bleed does not mean the iron deposits will go away on their own.

Stopping the bleed reduces the iron buildup over time, speeds up the ability of deferiprone (Ferriprox) to clear the iron deposits, and may reduce episodes of headaches that commonly accompanies acute bleeding events.

I’ve just been diagnosed with SS. I have a beta thalassemia trait though. Would deferiprone be a problem with that?




No. There is no problem using deferiprone in people who carry a trait for beta thalassemia.

Dear Dr Levy,
I have superficial siderosis, which developed over a seven year period after an operation to fenestrate a large spinal symptomatic arachnoid cyst extending from t5 to t 8, in 2017 in Addenbrooke's Cambridge.
I would be very grateful if you could tell me, in your opinion, would the Neurosurgeons refusal to conduct any follow up imaging, post surgery, and then discharging me from his care, have contributed to the conditions I have now?
I had a repair operation in NHNN in London in January 2025.
My current Neurosurgeon, Mr Sayal found that the lower intentional Durotomy sutures had failed within the first two weeks of the first operation( no signs of healing)
He also repaired a venous fistula that had formed right beside the failed Durotomy.
I have SS, Arachnoiditis ossificans and cognitive problems.
I know you are a leading expert, and I’d just like to know if you think it proper, that a Neurosurgeon would undertake such an operation with no follow up care.


No, I do not think it is proper for a neurosurgeon to not provide follow up care. In some medical systems, follow up care is provided by other providers such as neurologists or physiatrists. As long as an expert is following you, perhaps it does not have to be the neurosurgeon.

Ataxia is one of the main symptoms of SS of CNS and causes several symptoms. Might this be better described as MSA in some cases?

MSA is a wholly different disease entity from superficial siderosis. MSA is a disease in which alpha-synuclein builds up in neurons in the brainstem. The symptoms overlap because SS affects similar parts of the nervous system.

Does anyone know of a study/paper that would support having a CT myelogram? I'm due to see my neurologist soon and want to be armed this time instead of fobbed off again.


Yes, there is a publication titled, “Detection of Dural Defect Localization Using 4-Dimensional Dynamic Computed Tomography Myelography for Patients with Superficial Siderosis” that might be useful to your doctor. I will make the full article available.

Would cannabis be helpful for pain etc of SS ?

Yes, I have heard from many patients that cannabis helps with pain in SS.

Hello, I was in a head on car accident 2 years ago.
Ever since then, my health has gone downhill. Have many of the symptoms of SS. My cervical spine has had some major issues . Cervical facet syndrome, ligament laxity,and two other issues.plus slipping discs.
The thoracic spine has moderate to severe stenosis, the entire spine has multiple herniations, some osteophytes, and two small benign tumors. Trouble with constipation, and urinating about 30× day. Have had traces of blood in urine for about 4 months. Some bladder pain, Memory is getting worse, some hearing is off, sense of taste, smell, judgement off. Choke easily, Scare easily, Most Sounds are annoying. Pressure Headaches.,cannot easily tell when I have to urinate. Have to be reminded to drink water.. Sometimes I forget to eat a meal and suddenly realize I'm very hungry. Easily distracted,
Anxiety, it's like my fight or flight is always engaged .
Eye trailing , sometimes flank pain on the left side low toward my back. Doctors say
Have no infection. UTI , BLADDER or KIDNEY etc.
But have not been looked into further yet.
Have had many MRIs , mostly of the entire spine. Also had CT of ears.
I was told they found some abnormalities .
Aside from head, nec and spine trauma/ailments.
And seeing many specialists,
Sadly, no one has figured out what is causing all of these issues.
Quality of life is not very good.
What do you think?




Superficial siderosis is very visible on MRIs, if your doctors are looking for it. There are specific sequences called GRE or SWI (stands for gradient echo or susceptibility weighted imaging) where the siderosis cannot be missed. These scans are especially visible on brain MRIs and sometimes on spine MRI.


If the MRI is negative, there is no chance of having superficial siderosis. It’s a condition defined by iron on the surface of the brain and MRI is exquisitely sensitive at detecting iron on the brain.

Is dementia common with SS. My sister has moderate ataxia, walker dependent. Still falls weekly. Her hearing isn’t affected, praise the Lord! She is on meds for seizures, where she would blank out and forget conversation or where she is. She is more short fused than she used to be. I think it is because she has trouble getting her words out sometimes.. She does seem to not have the same mind she used to have. Hope it isn’t dementia. They found the bleed and corrected it about 4 years ago.



Dementia per se is not very common in SS, but it does happen. One of the major contributors is hearing loss. Hearing loss makes conversations very difficult for people. Other contributors to cognitive dysfunction are deferiprone (Ferriprox) medications and other medications such as anti-epileptics and anti-spasm medications for cramping and for bladder control.

Does exercise help improve or delay progression of someone with SS?



Exercise is helpful in SS. The reason it is helpful is because exercise forces the brain to communicate with the body bypassing damaged circuits and finding other neurological circuits to do the job.

However, if a particular exercise causes bleeding, that particular exercise should be avoided.

Is there a point where superficial siderosis can be avoided during operation? Can veins and the cerebral system be avoided or worked around?


Yes. One of the goals of any neurosurgical procedure is to avoid bleeding.

In general, what are the first steps you suggest that a person take who has “Secondary siderosis along the left lateral cerebral folia." or any Secondary siderosis found on a brain MRI? Thank you for taking time to answer so many questions.



If siderosis is limited to the left lateral cerebral folia, that indicates to me that this is cortical (type II) superficial siderosis. Generally, siderosis along one part of the cerebral cortex is not harmful. It does not lead to hearing loss, balance problems and many of the other symptoms.

Rather than worrying about what the effect of the iron deposits are, people with cortical superficial siderosis should worry about what caused the iron to deposit there. If it was trauma, that is good because trauma won’t recur. If it was an aneurysm, tumor or other reason that can get worse, I would focus on addressing that underlying issue.