Hello i have a brother that is desperately seeking support, he hears 5 distinct noises that are weird and not common amongst other people having SCDS. Doctors have determined that he has it and needs to know if others have the same sounds as he does. Sounds are, Bells, Cat growling, A deep scary movie sound, and two others that is hard to describe. Really don't know how to contact you so frankyz63 at hot mail dot ca
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yes there are many more people with this and I was one of them. I had my surgery two and half years ago at UCLA and I'm doing great. I emailed you just a few minutes ago with two support groups with people who are suffering with the same condition.
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Did you have your surgery. I thought Dr Miner left Johns Hopkins. Seeing Dr john Carey at Johns Hopkins in July
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My 48 year old son has recently been dx with SCDS and his doctor told him that he would not recommend surgery as it often worsens this condition. He is in a rural area and so soon, he will get a referral to a nearby teaching hospital. (Stanford is not a provider for his ins.) His life has been so changed with these horrible symptoms he is searching for any solution. Could anyone recommend a particular physician/s with expertise in this treatment modality? Our hearts go out to all of you who suffer with this rare (Thank God) condition as well as your families. Thank you The Edward's family
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Hi there,
My daughter most likely has scds based on her symptoms and vemp test results. She had high resolution ct scan that only showed thinning on one side. Vemp test was abnormal on opposite side. Her doctor wants to repair the symptomatic side as he suspects that it scd even though ct scan cant confirm it. My question to you is did your husband have the vemp test if so what were the findings? Did his doctor suspect thinning on other side or was dehiscence on only one side? We are so scared for her to go forward with the repair not having the ct confirmation. Her doctor has done about 150 of the scd repairs to date but we are still so hesitant to have her go through it. I would appreciate any comments you have, Thanks
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What helps . me is to use a walking stick or cane. I do not put any weight on it. It is just another way to tell my brain where ,"down" is.
Also, I stay away from fluorescent lights and keep my room lighting on the low side.
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HI, how is your Mom doing now? I am looking into the surgery now. Who did the surgery? Any issues now tiht her?
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Hello Ericoleen!
I just read your post this moment as I was trying to look for a forum on SSCD. I have it and decided last November 2014 to "live with it." I concluded that both middle fossa craniotomy and transmastoid approach may not resolve in partial or full this condition. I have changed my lifestyle so as not to trigger much all the symptoms of vertigo, oscillopsia, autophony, nystagmus but tinnitus has been a mainstay for many years with me. I simply had accepted this.
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Hi there
I had surgery back in 2012 for my SCDS and it has made a difference (I have only had one side done at the moment) but I do still get slight dizziness and nauseas (something that comes with the territory I have been told). It comes in fits and starts! I have more good times than bad (having a bad moment as I am writing this - I have a viral infection, which is affecting my ears and head and joints (not nice)) and the Doctor can only give me tablets for vertigo! Good luck with it all (it is good to speak with someone that understands).
Regards
Julie - suffolk
I had surgery back in 2012 for my SCDS and it has made a difference (I have only had one side done at the moment) but I do still get slight dizziness and nauseas (something that comes with the territory I have been told). It comes in fits and starts! I have more good times than bad (having a bad moment as I am writing this - I have a viral infection, which is affecting my ears and head and joints (not nice)) and the Doctor can only give me tablets for vertigo! Good luck with it all (it is good to speak with someone that understands).
Regards
Julie - suffolk
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After years of seeing doctors, doing testing etc. I was finally diagnosed with BiLateral Superior Dehiscence Syndrome (I have in both ears). I was also told this would not stop decreased hearing in my ears as I age, so hearing aid will still be in the future after the surgery. I don't have vertigo badly, but do have to stabilize myself sometimes. I have spoken to a specialist and was told my options. The one that scares me the most is chance of going deaf. I saw a segment on Dr. Oz about "Rachel" having surgery and is doing marvelous. I am watching our 1 year old granddaughter, who screams out from time to time, and it hurts my ears so bad, I want to puke! Does anyone have feedback on surgery that has taken place in the last year and who is the best surgeon in the country to perform this delicate procedure?
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Hello My name is Bob , I was diagnosed in 2014 after months of searching for what was wrong . I had 2 surgeries the first was not successful the approach the surgeon took was trying to repair the dehiscence from behind the ear .My second surgery was a middle cranial fosicia repair . The surgery did stop the noises from my foot steps and other body noises .
But the superior semi circular cannel had to be plugged . Which left me with only one side of my balance system . The doctors felt like the other side would be able to compensate for the weakness. I had weeks of vestibular therapy at 2 different clinics . After very high tech testing at a major hospital they have confirmed that my ( good side) will never be able to compensate .
I now live with dizziness from the time my head leaves my pillow till the time I go to sleep . I feel like I am ridding a rollercoaster all day long . I am not able to go to stores like Wal-Mart where the light and openness tears me all to pieces . My life is nothing like it once was.
This is such a life changing condition ..
But the superior semi circular cannel had to be plugged . Which left me with only one side of my balance system . The doctors felt like the other side would be able to compensate for the weakness. I had weeks of vestibular therapy at 2 different clinics . After very high tech testing at a major hospital they have confirmed that my ( good side) will never be able to compensate .
I now live with dizziness from the time my head leaves my pillow till the time I go to sleep . I feel like I am ridding a rollercoaster all day long . I am not able to go to stores like Wal-Mart where the light and openness tears me all to pieces . My life is nothing like it once was.
This is such a life changing condition ..
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Hello My name is Bob , I was diagnosed in 2014 after months of searching for what was wrong . I had 2 surgeries the first was not successful the approach the surgeon took was trying to repair the dehiscence from behind the ear .My second surgery was a middle cranial fosicia repair . The surgery did stop the noises from my foot steps and other body noises .
But the superior semi circular cannel had to be plugged . Which left me with only one side of my balance system . The doctors felt like the other side would be able to compensate for the weakness. I had weeks of vestibular therapy at 2 different clinics . After very high tech testing at a major hospital they have confirmed that my ( good side) will never be able to compensate .
I now live with dizziness from the time my head leaves my pillow till the time I go to sleep . I feel like I am ridding a rollercoaster all day long . I am not able to go to stores like Wal-Mart where the light and openness tears me all to pieces .
** It is so important to get a correct diagnosis . If you reply to this post is will share any information that might help you ...
This is such a life changing condition
But the superior semi circular cannel had to be plugged . Which left me with only one side of my balance system . The doctors felt like the other side would be able to compensate for the weakness. I had weeks of vestibular therapy at 2 different clinics . After very high tech testing at a major hospital they have confirmed that my ( good side) will never be able to compensate .
I now live with dizziness from the time my head leaves my pillow till the time I go to sleep . I feel like I am ridding a rollercoaster all day long . I am not able to go to stores like Wal-Mart where the light and openness tears me all to pieces .
** It is so important to get a correct diagnosis . If you reply to this post is will share any information that might help you ...
This is such a life changing condition
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Hello, i think i have this condition. I have been dizzy for almost 6years. I was diagnosed with vestibular migraine a few years ago but i don't think i have that.
Mine started with vertigo that jumped from side to side. Then spining vertigo after i got an ear infection. I get alot of dizziness when i move my head in any direction. I get dizzy when i go to the supermarket or shopping centre and i can't walk far as i feel my head is floating??? Some nights it feels like my head is floating off the pillow.
I haven't had actual vertigo for a few years now but every day is dizzy and feels like i'm on the verge of a vertigo attack.
My new symptom is hearing a thumping noise in my ear. This is different to the static noise i usually hear and it's not constant, just on and off. It doesn't sound like my hearbeat and its only in one ear.
I would like to have a ct scan to see what they find.
At the very begining i had some balance testing and a mri but all was clear so i did some vestibular exercises for a few months which helped with my balance.
Does anyone think i have the symptoms of this horrible condition??
Mine started with vertigo that jumped from side to side. Then spining vertigo after i got an ear infection. I get alot of dizziness when i move my head in any direction. I get dizzy when i go to the supermarket or shopping centre and i can't walk far as i feel my head is floating??? Some nights it feels like my head is floating off the pillow.
I haven't had actual vertigo for a few years now but every day is dizzy and feels like i'm on the verge of a vertigo attack.
My new symptom is hearing a thumping noise in my ear. This is different to the static noise i usually hear and it's not constant, just on and off. It doesn't sound like my hearbeat and its only in one ear.
I would like to have a ct scan to see what they find.
At the very begining i had some balance testing and a mri but all was clear so i did some vestibular exercises for a few months which helped with my balance.
Does anyone think i have the symptoms of this horrible condition??
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I had surgery in may and have been fine up unail about 2 weeks ago not I am having headaches and dizziness. Is this normal
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Hello, I am 3 weeks out from the same surgery and I am very unbalanced, dizzy, migraines, nystagmus, and I believe I have hearing loss and something is funny about that eardrum etc. I am wondering how you are feeling now and if this will ever go away?
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