Part of our Dr. Levy Q&A pages
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Latest Questions and answers
Ferritin Limit
MESSAGE:
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?
Intracranial Hypotension
MESSAGE:
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
beta thalassemia trait
MESSAGE:
I’ve just been diagnosed with SS. I have a beta thalassemia trait though. Would deferiprone be a problem with that?
large spinal symptomatic arachnoid cyst
MESSAGE:
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.
Ataxia
MESSAGE:
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?
Augmentation Cystoplasty Surgery
MESSAGE:
I’m soon going to be having Augmentation Cystoplasty surgery to increase my bladder size here in New Zealand.
My Neurologist of over 15 years recently retired and I was unable to see him to discuss it.
My new neurologist recommended it over having a catheter fitted. I was worried it would also stop working over time or not getting the desired effect from it.
Have you had any patients with SS who have had Augmentation Cystoplasty.
Blocked Carotid
MESSAGE:
My question is, I have been in the hospital twice in the last fortnight. I have one fully blocked carotid and one 50% blocked. The surgeon was going to operate but when he found the second one was 50% blocked, he said he wouldn't do it as my age is 75 years and with SS it is a risk. I have Hypoxic brain episodes which the doctors say mimic stroke symptoms. Dr Levy is that the same as the strokes we have with SS? I would like to put it in my notes if that is so. I go unconscious, and then I have seizures. These are happening at least every 2 weeks. Is this how it goes when I am at the end stage of SS? I am not scared to die and talk about it. I know where I am going to Heaven. I just want my husband's hand with me at that time. So I am very open about what is happening, so please be honest with me.
Bowel Functions
MESSAGE:
difficulties with bowel functions like constipation can be caused by SS. My gastro and colon have been scoped, no unusualilies have been found. Clearly problems caused by SS.
Are there any instructions how to improve the activity?
CT myelogram study
MESSAGE:
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.
Cannabis
MESSAGE:
Would cannabis be helpful for pain etc of SS ?
Car Accident
MESSAGE:
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, neck 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?
Central Neurocytoma Tumor
MESSAGE:
Hi, we live in the UK. My husband was diagnosed with SS in 2024 following the discovery of a central neurocytoma (tumor). He has since suffered from many symptoms which I believe relate to SS: hearing loss, balance problems along with memory issues which could be from the surgery. He is 37. Should he be seeing a specialist for treatment as at present he is receiving no treatment at all besides getting hearing aids? Since he is having so many symptoms does this suggest his progression will be fast or will it continue to be slow so we can have many more years etc
MESSAGE:
Hello, I am a long time user of Warfarin. 22 years. I have had 2 pulmonary embolisms, 1998 & 2008. I had 2 brain bleeds in 2017. I also have 2 mutations that make me 6 to 8 times more likely to have clots. My doctors want me to switch to Eliquis. I plan to switch in a few weeks. I just wanted to know what Dr. Levy thinks? I have been to Cooper, Jefferson and Penn. Not one neurologist from the three ever had a patient with SS. I have an appointment at Johns Hopkins March 29th. Hopefully I can some answers and treatment. >> I wrote to you separately in an email. But to give some general advice to the community, I do not think there is much difference in the safety of different blood thinners in SS. Warfarin vs Eloquis and the others are all probably the same. They all make it more likely to bleed. But just like all medications, the risks need to be weighed against the benefit. For some people, stopping blood thinners will lead to blood clots and death; therefore, even if it worsens the SS, you have to continue taking them.
MESSAGE:
My 81-year-old mother has been diagnosed with superficial siderosis, with deposits found on her brainstem, cerebellum, and spinal cord. She has undergone a series of operations over the years for cervical spine stenosis, including the insertion of rods and a cage to stabilise her. We had always attributed her symptoms to arthritis, but it appears that her balance issues, pain, neuropathy, and deafness could be attributed to this condition.
In addition to this problem, my mother also has antiphospholipid syndrome (an autoimmune disorder that causes blood clots) and has been on warfarin for over 20 years. She has been falling a lot, and her doctors have always told her to go to the emergency room if she hits her head because of the warfarin. Every time this happens, we go, and she has a CT scan that has never shown the siderosis. It is my understanding that an MRI will pick it up - NOT a CT scan.
Considering that she has a history of siderosis plus being on a blood thinner, if she falls and hits her head, should she be getting a CT scan or MRI in the emergency room? Will a fall impact this condition in any way?
>> A CT scan is better for visualising fresh blood from a trauma, and it's super fast. So if your mum falls and bleeds in her head somewhere, a CT scan is what you want to get.
A CT scan won’t visualise superficial siderosis, which comprises old blood products deposited on the surface of the brain. Only an MRI can detect this. Superficial siderosis evolves slowly and can be monitored annually or biennially. There's no need for an MRI after falls.