Making Plans
Living with superficial siderosis is very frustrating, to say the least; it’s hard to plan anything due to the spontaneity of the symptoms, which regularly leads to a complete change in routine, where I find myself juggling the day around to coincide with the pain and fatigueOverview The brain plays a crucial role in regulating sleep ... More. More often than not, I have to save my energy for the things that matter most and make contingency plans to make sure I get something productive done every day. Of course, if I find I haven’t done anything constructive, it drags my moodOverview Superficial siderosis progression may have profound... More down, but at the same time, I struggle to accept that it’s okay to have rest days when battling this progressive neurological condition.
Hearing LossOverview In approximately 95% of superficial siderosis patie... More
There are a lot of hidden symptoms with superficial siderosis; for example, people sometimes talk to me and don’t realise that I’m deaf; however, when I do tell them I’m deaf, they say, ‘but you don’t look or sound deaf.’ I’m not one for wearing a badge that says, ‘I’M DEAF,’ because being deaf doesn’t define me; it’s just part of who I am. Other deaf people might feel differently and want to show their disability, but that’s not for me. The one thing that does bother me is that it’s 2022, and not all services have accessibility for deaf people. I mean, how hard is it to communicate via email?
Pain Management
Having a bad day of pain can really take its toll. You might have read some of my previous pieces about the zapping pain I get at the back of my head; which still to this day is a big issue for me. It’s not only the pain; it also comes with dizziness and nausea. The three combined make it so difficult to do anything, and on a few occasions, I’ve had to miss my neuro-rehabilitation sessions to lie down and rest.
New Symptoms
The latest addition to my symptoms is neuropathic pain in my feet. Previously at night, when trying to sleep, it was the tinnitusOverview Tinnitus, often experienced as a soft indication of... More keeping me awake; hissing, buzzing, and crackling in my ears. Now I’ve started to get this intense pain in my feet that seems to be driven by them being cold. I purchased a hot water bottle for my feet, which slightly helps to warm them up, but it does not take away the pain as such. I find that good sleep can help to reduce the severity of the zapping at the back of my head, but sadly my ears and feet don’t want that to happen.
Some Good News
I finally have a date set for the cochlear implant surgery in London, and my consultant neurosurgeon has booked me in to have more injections in my neck to (hopefully!) relieve the zapping pain. Of course, it comes to something when you’re looking forward to having surgery and needles in your neck, but that’s the reality of superficial siderosis.
In Oct. 2018, my husband was diagnosed with Superficial Siderosis…He was devadtated…He had physiotherapy, vestibular exercises and also some sessions with Psychologist… We found a very good Neurosurgeon, who helped my husband with his SS… He had undergone myelogram and blood patch procedures (twice)— the aim was to patch the area where the active fluid/blood leak was, -to stop the progression of symptoms… After the procedures, he’s not complaining of having the intermittent headaches anymore; although other symptoms are still present – balance, backaches, hearing loss, vision. .. He still can drive during the day, but not at night; his hearing has deteriorated significantly especially the right ear, and he’s now wearing powerful hearing aids. However, he’s still struggling to communicate at times due to the tinnitus. – My husband looks normal, but he has multiple medical conditions – ischaemic heart disease(had angioplasty in 2010); SS in 2018; essential trombocythaemia in 2021). He is (only) 56 years old.
Living with SS is not easy and at times, most of the times, can be depressing… but his life has found a new meaning the very moment he found out that our only daughter is pregnant. He is very excited to be a grand dad, and keeps on saying that his life has ‘turned around’ again. :)
Has anyone with Superficial Siderosis and who is a musician, found a disconnect between the musical notes on the page, and the ability to smoothly play the notes with their fingers? Sometimes, while playing the piano(which I love to do, and which use to be natural and fluid for me) I go to play the notes from the sheet music and I feel disconnected somehow like the connection between my brain and the action of moving my fingers to the notes ,that I know ,is not there and it makes it hard to play… I am not giving up on my music! I love music! I just want to know what I can do to cope with this and be able to get back to playing it more easily. If you have anyone that can answer this question I would appreciate it ever so much.
The coldness in your feet is neuropathy, my son has it. But saying that he’s cold all over, shivering sometimes, even when I don’t think it’s that cold..x
I have to say unfortunately I really enjoyed your description of your day.It was like I had written it myself.It(SS) is a horror.I have become clumsy,and always feel like falling over.I am under John Radcliffe Oxford.I was told 18 months ago.That was it.Left to get on.I have done all the research my self.I have a great physio at the local hospital.Yours seems much worse than mine.Have you an active bleed.I don’t.I have just got hearing aids.Wish you well with the implants.Once again Thank you for your information. SUE.