7 Weeks Update & Thoughts on SSD
23y Female, South Australia
Links to pictures at bottom of post.
Hi all,
If you haven’t seen other posts from me, you can familiarise yourself with my journey by clicking these links to access my other posts:
Diagnosis Information
https://www.anausa.org/smf/index.php?topic=25305.msg979783463#msg979783463
Surgery Booked - Pre Surgery Information
https://www.anausa.org/smf/index.php?topic=25334.msg979783616#msg979783616
10 Days Post Op - includes photos
https://www.anausa.org/smf/index.php?topic=25348.msg979783728#msg979783728Today I’m just one day off 7 weeks post op.
To be honest not a lot has happened since my last update post at 10 days post op, hence why I haven’t updated until now. Still not much has happened but I thought I should post since it’s been a while and I’ve accumulated some interesting information which could be useful to you.
My thoughts and general update is included, however this post is mainly just to share photos of how the scar is progressing, you’ll find links photos at the bottom of this post.
I have my first post op vestibular physiotherapist appointment on March 8. I had one pre operative appointment with this person so they could get an idea of my baseline pre surgery.
This appointment, I assume, will be to assess my needs post operatively and begin exercises to assist with balance and coordination.
My balance is certainly off and I notice it when I step awkwardly, then I stagger and have to hold something to prevent a fall, rather than just re balancing myself like I assume “normal” people would.
My coordination doesn’t appear to be too effected, however I have noticed some clumsiness as of late.. but I think I was clumsy to some degree pre surgery….
Pain is essentially non-existent. I’m still having issues with my hip flexor. I believe it is the tensor fascia latae AKA. TFL. I have some sharp stabbing pains when I walk, or activate the muscle. I’ll ask the physiotherapist for guidance on this at my appointment.
I haven’t returned to any kind of regular exercise yet due to this hip issue. I don’t want to aggravate it, or begin regular exercise and then be set back due to the hip - would be totally demoralising. So I’m just taking it slow.
I’m still on leave from work and I’m not due back until April. I am really enjoying my time off to be honest.
Regarding post op symptoms, all I’ve really noticed is tinnitus. The tinnitus seems to change regarding the background noise in my environment, and depending how tired I am, the volume can change.
I am completely deaf in my right ear (although I haven’t had an audiologist confirm this). I have heard that the tinnitus is not from the ear, rather from the brain which “fills in” the void. Gee, thanks brain, really appreciate the meaningless roaring! (Not.)
Interestingly, although I am deaf in the right side, when I wear headphones in both ears, I experience the sensation of hearing through both ears even though I am not actually. Even though this is a phantom sensation, I’ll take it!
At the end of this post I will share my thoughts regarding this phenomenon.
Echo location/orientation is difficult. Sometimes in public I can’t tell where sounds are coming from. Also, I have noticed a feeling of “drunkenness” as I sometimes stumble around new environments. I think for me this is a combination of balance and sensory issues, but also I think I used sound to position myself in environments more than I realised. I sort of feel like I’ve had my whiskers cut off on one side.
I’m not currently doing any exercise or treatment schedule, as mentioned above. However, I will probably start this around the time I get back to work. I may start my physiotherapy exercises sooner though, depending what the physiotherapist says.
I have not experienced any side effects or complications from the brain surgery element and for the most part I am healthy and well. I’d say I’m at 95%. The issues I’m experiencing are minor and I pretty much feel like I’m living my normal life. Which is great. My loved ones are totally pleased with my outcome.
Well I think that about concludes this post.
If you’re interested please see below my thoughts on SSD and dual sided phantom hearing phenomenon when using headphones. Don’t forget to check out the scar photos as well.
Cheers,
Jordy.
One month hair up
https://files.catbox.moe/hy74ud.jpegOne month hair down
https://files.catbox.moe/ym6of7.jpeg7 weeks (today)
https://files.catbox.moe/b1qr5e.jpeg____________________________
SSD/bone shokz/mono/CROS
—-Please note this section is a pasted text from my online response to a thread discussing bone conduction headphones, single sided deafness, CROS hearing aids, and mono-audio settings.—-I’m also a music lover and have obsessively researched what could be done about SSD. I’ve also commented on a similar post so I have transferred the same information here as I believe it covers the points. I just want to share this info because maybe it will help others help themselves. Also happy for anyone to point out areas if I’m wrong. Will help me understand as well. As far as I know this is how it works.
There are two main points here:
1- Your auditory nerve is the deciding factor on if you can hear or not. If your nerve is dead, AKA you have total hearing loss, you will not be able to hear from the deaf side.
If you have some percent of hearing left, then your auditory nerve is still somewhat functional and headphones and hearing aids should help you.
2- There is a phenomena that makes you “feel” like you’re hearing on both sides even though you aren’t.
(Either way, if you can feel like you’re hearing on both sides even when you aren’t, from a recreational standpoint, what’s the difference? That’s good enough for me 🤪)
Below applies if your hearing apparatus of the ear is functional (cochlea etc)
So, from my understanding if your hearing nerve is still functional in some degree then you should be able to get a hearing aid to amplify it.
However, if your nerve is kaput, hearing aids don’t help. Hearing aids are designed to aid the cochlea. If your cochlea is already healthy but your nerve is dead, it’s like plugging something in to a power point that has no electricity connection. The nerve is what delivers the sound to the brain. The nerve, if it’s dead, prevents the sound getting to the brain.
So far there is no technology to make a dead nerve work again.
But, if you have any percent of hearing remaining and your nerve is not completely dead, I’m pretty sure that an aid which amplifies sounds on that side could work.
But I recommend that you verify this with either an ENT or an audiologist who specialises in this area. I’m no doctor, just an obsessive researcher. I hope this helped.
Here is one of my other comments on point 2 the hearing phenomena,
“I experience this same phenomenon with headphones even though I’m deaf on the AN side.
The thing with me is that wearing headphones on both sides tricks my brain into the sensation of hearing on both sides like normal, even though I’m actually not. For me, it’s just a mind trick/illusion. Either way, I’ll take it.
A funny thing, I can’t experience this if I only wear the headphones on the hearing side. Or if I only wear the headphones on the AN side. It has to be on both ears/wearing normally for this to work, then I feel like I’m hearing through both ears again.
Super weird, kinda awesome. I’m sure if I tested the audio Left Right like a hearing test that it would not work.”
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Additionally, I’ve been reading others’ reviews about SSD and bone conduction head sets. Lots of people say they can hear on the SSD side.
In my opinion this is either due to point 1: they have some percentage hearing left and therefor they can actually hear from the head set. Or it’s point 2: hearing phenomena due to the sensation/illusion caused by the brain being tricked.
I think that the bone conduction headsets are “more effective” (I.e. people are hearing, or people think they are hearing even though they aren’t) because of the vibrations caused by the bone conduction. The bone conduction headsets operate by sending off vibrations which are transmitted through the mandibular bone. You can even feel the vibration with your fingers when the music is playing. I think because one can actually feel the sensation of the vibration, the brain picks up the sensation and it makes you feel like you’re hearing from both sides.
In my opinion, whether you are hearing or if you’re only being tricked into feeling like you’re hearing, what’s the difference. Being able to experience music through both ears even when you’re SSD is a blessing and I’ll take that.
Additional note:
The only other thing to help “transmit” the hearing from SSD side to hearing side are CROS hearing aids. CROS hearing aids are a microphone on SSD side with a speaker on the hearing side. So all sounds from SSD side are funnelled into the hearing side. I haven’t tried this yet.
The other option for headphones and hearing all sound in one ear is setting sounds to “mono” either via phone or app.
For iPhone go to Settings, Accessibility, Audio/ Visual. For Spotify you can find it in Settings, Playback.
I can’t find any mono option for YouTube music.
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End of post.
