Interview with Wendela van Swol
Unmasking the Invisible: A Journey into Superficial Siderosis
It began with a tingle.
A strange, fleeting sensation on one side of the body—just enough to raise a question, not
enough to raise the alarm. But for Wendela, that question turned into a relentless quest for
answers, pushing her through a maze of scans, conflicting opinions, and unsettling
Silences. What followed was a nearly two-year journey marked by persistent self-advocacy,
medical ambiguity, and quiet courage in the face of a rare neurological disorder that most
doctors have never encountered—Superficial Siderosis (SS).
In a world where answers are often elusive and specialists scarce, Wendela became both
patient and researcher, learning to decode her own MRIs, navigating foreign-language
medical journals, and harnessing the power of artificial intelligence to illuminate the dark
corners of this condition. Her symptoms—tingling, hearing loss, ataxia—were the whispers
of something deeper, something bleeding silently within.
This is not just a medical story. It’s a personal, deeply human chronicle of resilience,
scientific curiosity, and a fierce will to understand. Wendela’s experience offers rare insight into the diagnostic challenges,
emotional weight, and physical impact of living with SS—and how determination, community, and innovation can help
illuminate the path forward.
What follows is her voice—honest, informed, and quietly powerful—as she unravels her experience with Superficial
Siderosis and shares the strategies, setbacks, and hope she carries into each day.
Background and Diagnosis:
Q.Can you share a brief overview of your journey with Superficial Siderosis (SS)?
Q.How was your SS diagnosed, and what symptoms led you to seek medical
attention?
Q.What were your initial thoughts and emotions upon learning about your condition?
A. My journey toward a diagnosis of Superficial Siderosis (SS) began in October 2022
when, over two consecutive weeks, I experienced tingling sensations on the left side
of my body—from my face down to my feet—several times a day. I scheduled an
appointment with a neurologist, who suggested that these episodes (which had
already disappeared by then) were a form of epilepsy (focal seizures without loss of consciousness). To keep it brief,
I underwent an EEG, an MRI, and an MRI angiography (MRA) to check for arterial abnormalities in my head. The EEG
showed mild epileptic activity, the MRA was normal, but the MRI revealed 'remnants of hemosiderin in supra- and
infratentorial subarachnoid spaces, basal cisterns, Sylvian region, and intraventricular areas, with notable remnants
of hemosiderin in the supravermian region.' Additionally, it showed 'areas of gliosis and/or demyelination of chronic
ischemic origin, mild in degree.
I began researching what these findings could mean, and the presence of hemosiderin remnants led me to consider superficial siderosis (SS). I also have severe hearing loss in my left ear, which further raised my suspicions. When I asked the neurologist if it could be SS, he said no, as I didn’t exhibit any ataxia. Three months later, I had another EEG, which came back normal. As the tingling sensations had completely disappeared, he advised me to return only if the tingling recurred.
Throughout 2023, I felt fine. However, in October of that year, I experienced brief episodes of tingling in my head, lasting just a few seconds, mostly in the evenings. I decided not to return to the previous neurologist and instead visited an internist while waiting for an appointment with a different neurologist at a hospital. The internist ordered a third EEG, and this one did not go well. When they used flashing lights (like disco lights) during the test, my body shook. The neurophysiologist recommended that I see a neurologist for further evaluation and so did the internist.
In January 2024, I saw a new neurologist who wanted to locate the source of the hemosiderin deposits in my brain. We repeated the previous MRI, and the results showed no changes from the earlier scan. However, this time, the neuro-radiologist explicitly mentioned the term superficial siderosis in the report.
Since I had spent time researching the subject—and had also joined the two Facebook groups—
I suggested performing an MRI on my cervical region. This was because I had undergone surgery
in my late twenties to remove a neurinoma (schwannoma) at the root of C7. During that procedure,
the surgeons had to make an incision in the dura mater to remove the entire nerve. The operation
lasted 10 hours, and I was given a blood transfusion of 4000 cc, which is a significant amount of
blood (approximately 135 fluid ounces). The neurosurgeon at the time ( 1992) had explained that
I had lost a lot of blood because, due to the proximity of the medulla, he couldn’t use an
electrosurgical scalpel.
All of this came back to me, and I mentioned it to my neurologist. I suggested that it might be a good idea to examine my cervical region, specifically the area where I had undergone surgery.
To fast forward a bit: It turns out I was left with a pseudomeningocele, meaning my dura never fully closed after the surgery. Additionally, there are two surgical clips still in place, which complicate high-definition MRIs, because they create artifacts that disrupt the images.
I also underwent a lumbar puncture (April 2024), which showed slightly xanthochromic cerebrospinal fluid (a yellowish discoloration often associated with subarachnoid hemorrhage or similar conditions) and contained high levels of protein. This was a significant setback for me, as it indicated that somewhere, there was still a slow bleed into my cerebrospinal fluid (CSF). After that, I had a traumatic and extremely painful experience with a CT myelogram, but unfortunately, no source of bleeding could be identified.
I also sought a second opinion at a private top clinic with a neurosurgeon. After another high-quality MRI, he and his team could only hypothesize about the source of the bleeding—either the pseudomeningocele or a small adjacent piece of tissue, which could be either, a remnant from my former surgery 32 years ago, or a new growth. The neurosurgeon advised against intervention, explaining that the risks of paralysis in my hand or leg outweighed the potential benefits of surgery.
Regarding my emotions, I want to be proactive. For me, understanding what is happening in my brain helps—to a certain extent, of course. I’ve done a lot of research on the subject, reading medical publications (though there aren’t many, as this is a rare disorder). I’ve also spent time learning about brain anatomy and how neurons function. Additionally, I’ve read extensively about ferroptosis, free radicals, and antioxidants, including consulting Artificial Intelligence for insights.
Ataxia and Daily Life:
Q. How has ataxia affected your daily routine and mobility?
A. My ataxia is still relatively mild, and I think I notice it more than anyone else does. However, I struggle with tasks like tandem walking or standing on one leg. For example, when going down stairs, I need to hold onto a stair railing or someone’s arm for support.
Q. Are there specific activities or situations where you notice ataxia affecting you the most?
A. Not really, I avoid going to a gym, for instance.
Q. Have you found any strategies or exercises that help you manage balance and coordination challenges?
A. After the summer, I decided to start neuro-physiotherapy. I enjoy it very much. I’m learning exercises to stimulate left-right coordination and vestibular exercises to improve balance, and I also get homework. I find it important, which is why I’m continuing with it. Additionally, I take long walks every day, whilst I do my vestibular exercises at the same time ; I just want to keep my body active for as long as possible. I’m also convinced that getting outside and walking is beneficial in general. I’ve even gone back to practicing the piano, something I used to do as a teenager.
Playing the piano is a great form of bilateral stimulation! Riding my bicycle hasn’t changed at all—I feel stable and fine. A friend recommended a Dutch website that offers 15 minutes of ‘easy’ physical exercises. Sometimes there are balance challenges, but you can grab a chair for support, which they also recommend. There’s another app where you can do various memory games, including arithmetic and word puzzles. I’ve found that sleeping well is crucial. After a bad night, my balance is noticeably worse. Also, sitting for too long on a chair makes me wobbly on my first steps.
Medical Opinions and Challenges:
Q. You mentioned having an active microbleed that doctors have been unable to locate. How has this uncertainty affected your treatment approach?
A. Until now, my local neurologist is against the use of the iron chelator Deferiprone due to the possible risks of side effects, such as neutropenia or agranulocytosis. He also says there is no real proof of its effectiveness (according to what he has read in publications). However, he is not the person who should prescribe it, that is the job of a haematologist, and the latter should monitor it.
I have spoken to a neurologist in London who told me that where he works, they can already show very promising results. It’s a medication that requires time, years, to remove the hemosiderin from your brain. I would like to try it as I’ve been told that I have quite extensive siderosis on my brain, which is a real menace to my overall wellbeing. I was told that it is actually quite amazing how my “system” seems to have been capable to adapt itself to this toxic intruder until now.
Risk of paralysis:
Q. How do you feel about their decision not to pursue surgery due to the risks involved?
A. In the beginning, I accepted that. I do not want to run any risk, of course. But, after a Welsh friend with SS passed me a link and spoke highly of his skills, I decided consulting a neurosurgeon in London who has experience with superficial siderosis (SS) and who is an expert in complex spinal surgery. After my consultancy with this eminence, during which he showed me my scans, explained why my bleed would not show up on scans— as it’s through a filtering process—and how the procedure of repairing my CSF leak and the adjacent pseudomeningocele would take place, I decided to go ahead with him. I want this silent bleed, which will cause so much harm on the long run to be arrested. He did not predict paralysis. I could have some sensations of “pins and needles” in my left hand, but I’d rather have that than ending up not being able to walk anymore or going completely deaf. He will do his utmost best and he has my confidence.
Alternative Treatment and Supplements:
Q. Your neurologist is strongly against using Deferiprone—can you elaborate on their reasoning?
A. He mentions that it is still in a clinical phase and has not been tested through cross-testing with placebos. Additionally, the few publications available are not particularly positive about its effectiveness (I’ve read some in different languages myself). From my own readings, I know that it takes at least two years before any reduction in hemosiderin deposits becomes noticeable. Moreover, while it may prevent your symptoms from worsening, it will not reverse the damage—your central nervous system (CNS) is permanently affected by the toxic free iron. In the social media groups I’m part of, I’ve learned that some people experience no side effects, but quite a few report fatigue. As a fairly active person, I’m not too keen on feeling exhausted every single day, but you will only know if you try it. And I want to try it!!
Q. What led you to explore alternative treatments and supplements for managing SS and ataxia?
A. Since Deferiprone seemed not to be an option for me, I’ve done extensive reading on ferroptosis, antioxidants, and related topics—including the work of Dr. Michael Levy in the U.S., who is a leading researcher on superficial siderosis (SS) and mentions certain supplements—I wanted to explore these further, tailored to my specific situation. This includes managing SS, an active bleed, and hypertension.
Q. How did you use AI tools like ChatGPT and DeepSeek in your research?
A. I have found that, obviously, AI avoids giving direct medical advice, so I approached the topic from a different angle. I started by asking questions like, ‘Which chelators can cross the blood-brain barrier?’ Then I followed up with, ‘Which of these is considered the most effective for clearing free iron in the brain?’ Unsurprisingly, it mentioned Deferiprone, along with its pros and cons. Next, I asked about alternatives to combat ferroptosis in the brain, and it suggested options like lactoferrin—a glycoprotein that regulates iron and has antioxidant and anti-inflammatory properties. It is considered a safe option with neuroprotective potential. The AI also highlighted antioxidant strategies, explaining that oxidative stress plays a central role in ferroptosis, so antioxidants are essential for protecting brain cells. It provided several options, which I then filtered based on my specific conditions: active hemorrhage and hypertension. After applying these filters, I was left with a list of supplements that could potentially work for my case.
Q. What supplements have you started taking, and how did you decide on them?
A. I’ve started taking liposomal (liquid) Lactoferrin—10 ml early in the morning on an empty stomach and another 10 ml in the evening before bed. Additionally, I took but then I stopped taking NAC (N-acetylcysteine), one effervescent tablet occasionally, because it can reduce lipid peroxidation linked to ferroptosis. Its use is safe for patients with active bleeding, as it does not have anticoagulant effects. Furthermore, I take Astaxanthin and PQQ, or Pyrroloquinoline Quinone, which is one of the major nutrients used in helping promote cell energy and preventing oxidative stress. Lastly, I take Glycine before bed. Glycine also plays a vital role in producing glutathione, a powerful antioxidant that protects cells from damage. Additionally, glycine may contribute to improved sleep, cognitive function, and metabolic health, which is particularly beneficial for neuroprotection in cases of superficial siderosis. The AI provided more options, but I decided to start with just these to see how my body reacts. Apart from these, I also take vitamin B12 as I had read it was great for “brainfog”. I was having trouble finding words, names, forgetting my keys, my shopping list etc., and now I’m so much better.
Effects of Supplements and Personal Observations:
Q. You mentioned that your stability has significantly improved in the morning—can you describe this change in more detail?
A. When I wake up, I notice that I feel more stable but that could also be due to all my exercising or both. I cannot tell. However, when I’m tired, my balance is noticeably affected.
Q. Have you noticed any patterns in how fatigue affects your ataxia throughout the day?
A. Since I have hypertension and take medication for it, my cardiologist wants me to monitor my blood pressure regularly, so I measure it a few times throughout the day. Sometimes my blood pressure drops quite low (for me), and when that happens, both my energy and balance are negatively affected. Since I never drink caffeinated coffee, I make a very light cup when this occurs, and it helps restore my energy and balance. By the way, according to AI, coffee, even decaffeinated, is also a great antioxidant.
Q. Have there been any unexpected benefits or side effects from the supplements?
A. Not really. I used to take R-Alpha Lipoic Acid, which is a fantastic anti-oxidant, but in my case, it lowered my blood pressure too much, making me feel very tired. Therefore, I only take it when my blood pressure spikes a bit.
Looking Ahead:
Q. What are your hopes for future treatments or advancements in managing SS?
A. That they`d find a cure! Or at least develop an affordable iron chelator without the risk of nasty side effects.
Q. How do you plan to continue monitoring your condition and adjusting your treatment approach?
A. At the moment, I don’t have any special ‘plan,’ as I’m not a medical specialist. This is a rare and complex disorder, and most of the specialists I’ve spoken to have little to no knowledge about superficial siderosis (SS). I’ve learned that when you have an active bleed, it’s crucial to inform your GP because it means you can’t take just any nonsteroidal anti-inflammatory drugs (NSAIDs), as some may have antithrombotic properties. For my annual check-up, a blood test is included, and I’m curious to see the results. I had a second lumbar puncture not long ago and the outcome was even worse than last year’s (loads of red bloodcells, high ferritin, low pressure). Now, that I’m going to have my surgery, hopefully, everything will be different. The plan is to have a new lumbar puncture 12 and 14 months after the surgery.
Q. What advice would you give to others who are navigating SS, ataxia, and treatment decisions?
A. I’m not in any position to give advice to anyone. However, I have a strong sense of curiosity and enjoy learning and reading. I can read in five languages, which helps me access a wide range of information. Nowadays, if there’s something I don’t understand, I can simply look it up on Google or ask an AI chatbot for clarification.
Closing Thoughts:
Q. Is there anything else you would like to share about your experience that we haven’t covered?
A. My experience with this condition is still quite limited. Remember, my life changed only recently (even though I have coped with years of terrible headaches). I’m fully aware that I’m still quite lucky, as this nasty disorder hasn’t caused significant harm (only my one sided hearing loss) to me yet—especially compared to many fellow patients. I would love to sit down with a neuro radiologist who could show me my hemosiderin deposits. I know they appear as black stains on scans, but I barely know how to identify them myself. Being able to see them would help me understand more. I know what I have, and I know what could happen, but for me, knowledge is power.
Sometimes I wonder if my relatively mild symptoms are due to having a very active brain. Could it be because I switch between three languages on a daily basis? Or is playing musical instruments helping to slow down the degenerative process? I’ve played the flute professionally and the piano as a secondary instrument. Could sleeping exclusively on my right side explain why I have severe hearing loss on the left but not as much on the right? Questions I have.
To conclude, as a disclaimer: I’d like to emphasize that my use of supplements is my own personal choice and responsibility, and it should not be taken as a recommendation for anyone else.
Wendela van Swol - Interviewed by Debbie Ebiniyi.
