We're truly grateful for the expert based at Massachusetts General who has been collaborating with us since 2015. Over the past few years, we've accumulated a substantial archive. With a bit of searching, you should find the answer you're seeking. However, we understand that we may not have addressed every topic. Therefore, if you have any further inquiries, please don't hesitate to contact us; we would be delighted to assist by forwarding your question. It's all part of what we do.
These answers relate to bowel and bladder problems. If you're looking for something specific, please use your internet browser's page search facility (usually in the top right-hand corner of your screen) to search for particular keywords. Alternatively, browse down the page to learn more about how Superficial Siderosis can affect everyday life and what can be done to help. If you'd like to broaden your search, you may find what you're looking for on another part of the Silent Bleed site - please use the search box in the header above.
Question:
Bowel & Weight Loss: My son has been experiencing a lot of bowel problems lately. I've been giving him laxatives and suppositories daily, but they haven't been effective. Additionally, he has lost his appetite and is losing weight. Is there anything else I can do to assist him and prevent him from needing hospitalization?
Answer:
Severe constipation can occur in superficial siderosis, and it must be managed to avoid much bigger problems. Firstly, it’s important to clear the bowels of any impaction, which your doctor may need to assist with. Once there is some movement, you can use laxatives to keep things moving. Ultimately, the goal is to maintain a regular, high-fiber diet to keep the gut healthy. Managing someone else’s diet can be challenging.
Question:
Hi there, I'm messaging from Sheffield, UK on behalf of my dad. He's 73 and was diagnosed with SS around 2000. He's in the advanced stages with total hearing loss, nystagmus, loss of bladder and bowel control, and he's in a wheelchair as he can no longer walk. I've heard about Ferriprox and wondered if it can be used in the advanced stages of SS. I've never heard his consultant mention this drug.
Answer:
Ferriprox is approved in the UK and should be accessible. There is no other iron chelator that penetrates the brain, so it's the only option for treatment at this time. There's no telling if your dad could see the benefits of Ferriprox since it will take several years to remove the iron.
Question:
I had an MRI and lumbar puncture on Monday, August 18th. The results haven't been printed yet, but the doctors who were observing the MRI mentioned they hadn't seen blood in the cerebellum like I have. They conducted a head-to-tailbone MRI, and the bottom of my spine has revealed something concerning. Can Superficial Siderosis affect the spine as well? I experience a lot of pain in my back, and my bowel is leaking, while my bladder either remains constantly full or only empties 6%. This seems to occur when I've had a bleed and experience vasospasms. Are all these symptoms connected to the bleeds and Superficial Siderosis? I suffered a brain bleed during the lumbar puncture. Initially, it was thought to be a result of the procedure, but it might have caused something else. I was hospitalized, and my speech deteriorated completely, resembling that of a stroke victim—this happens every time I experience a bleed. My speech becomes incomprehensible. I would appreciate your input as I await my appointment with a neurologist at Auckland City Hospital for assistance.
Answer:
All superficial siderosis patients are susceptible to spinal cord involvement. The spinal fluid is produced deep in the brain and circulates around both the brain and the entire spine. Bleeding into the spinal fluid allows the iron (from inside blood cells) to circulate around both the brain and spinal cord. When bleeding occurs into the spinal fluid, the fresh blood irritates both the lining of the brain, causing neck stiffness and fever, and the blood vessels around the brain, resulting in neurological dysfunction similar to a stroke. To achieve this level of irritation, there usually needs to be a significant amount of blood—on the order of 20,000 red blood cells per milliliter of spinal fluid.
Question:
I've been experiencing terrible, uncontrollable loose stools. I am unaware of when it happens; it's been going on now for about two years, but now it's worse than ever. I've been prescribed 8 Imodium tablets per day, which isn't working. Do you have any ideas as to what I can do? I was diagnosed 24 years ago
Answer:
I can suggest three options:
1. Bulking agents to make the stool thicker and less runny, such as Metamucil, along with bananas.
2. A bowel training program to encourage once-daily emptying. However, it may be difficult to maintain the associated diet.
3. Tincture of opium to slow the gut. This option is very effective but can be hard to find.
Question:
I've been having a problem with recurring UTIs. Is this a result of SS? I've been trying to drink at least 8 glasses of water a day. I have problems with dry eyes, brittle nails, and the bottom of my feet feel like leather... very dry. Are all these because of SS, and what should I do about the UTIs? I have to wear Poise pads because of leakage, and that seems like when the UTIs started. Could that be a contributor, too?
Answer:
SS can cause bladder problems, predisposing individuals to infections. Additionally, urinary tract infections (UTIs) can exacerbate the leaking. Drinking plenty of water is beneficial. You can also try remedies such as cranberry juice to acidify the urine, as it sometimes helps. In more severe cases, preventive daily antibiotics are often prescribed.
Question:
Many of us report bowel and bladder problems. Which nerves are being affected by the SS that cause this dysfunction? I am having a problem with urinary retention and am currently on 2 drugs for overactive bladder with only mild success. Do these same nerves affect the prostate? While I am able to get an erection, I cannot climax and ejaculate. I'm wondering if this is because of the SS?
Answer:
Yes, this is partly because of SS. Blood in the spinal fluid drifts down to the bottom of the spinal column by gravity, where it breaks down and releases iron. Local processes to buffer the iron result in hemosiderin, which sticks to the nerves going out to the pelvis (sexual organs, bladder). Overactive bladder is more commonly due to siderosis at the top of the spine. Drugs that reduce bladder spasticity/incontinence can lead to retention. It can be challenging to find the right regimen that prevents accidents but doesn't lead to retention.
Question:
My bladder doesn't empty completely. Even after spending a significant amount of time in the bathroom, it still remains partially full, leading to occasional accidents. I find myself constantly needing access to a restroom wherever I go. To manage my frequent nighttime urination, I currently take Toviaz ER 8 mg. However, I've heard about Botox injections as a potential solution. Although I lack detailed knowledge about them, I understand they're beneficial for certain women. Should I explore this option further? How exactly does it work?
Answer:
Bladder spasms and retention work in balance. If you have a spastic bladder causing leaking, you may take medication such as Toviaz to relax the bladder wall. However, this relaxation can lead to retention, requiring you to sit on the toilet for 15 minutes because your bladder wall is too relaxed. Botox functions similarly to Toviaz in this regard.
The best thing to do is to try to find the right combination to balance your bladder. It depends on your sensitivity to these medications and how much fluid intake you need per day. Keep a journal and see if you can tweak it yourself. If not, a urologist may be able to help you balance this issue.
Question:
My father has hearing loss and bladder problems that have been attributed to age and prostate conditions, but I feel they may be associated with SS. Aside from these, his primary symptom is a feeling of tightness around the head and being incredibly hot despite his temperature being normal. The heat is proving incredibly distressing - he feels so hot that he wants to be in an ice bath. I can find no other reports of this symptom, and I wonder if you have heard of it, and if so, do you have any tips on managing it? My second query is that the cause of my father's SS has been given as amyloid angiopathy, and I wonder if this makes any difference in terms of trying iron chelation as therapy. Can we still approach SS in the same way as one would approach it when it is caused by trauma? Many thanks indeed for your efforts and dedication to this site. I will be checking in and passing it on to my parents for their information.
Answer:
I don’t know if the banding sensation around his head and the heat are due to superficial siderosis. This type of problem generally localizes to the top of the spinal cord at level C2, which can be affected by various factors such as a dural tear causing SS, but also other issues like disc disease. I would recommend getting a scan to see what we’re dealing with at that C2 level.
Regarding the urinary symptoms, it's likely a combination of age (prostate) and siderosis.
Amyloid angiopathy is an additional problem that causes superficial siderosis. It is due to friable blood vessels within the brain that routinely bleed and leak into the spinal cord fluid. I suspect that amyloid angiopathy will be a bigger concern than superficial siderosis over the next few years. Ferriprox has never been tested in amyloid angiopathy or in superficial siderosis caused by amyloid angiopathy.