Sæl Sigrún from Iceland
Veit það er soltið langt síðan þú varst að kommenta hérna, en ég myndi endilega vilja spjalla aðeins við þig um þessi einkenni. Þau virðast passa við einkenni sem ég hef haft í soltinn tíma.
Vona þú sjáir þessi skilaboð.
Kv,
Brynjar from Iceland : :)
Loading...
I was mis-diagnosed for about 8 years. About 2 years ago I was diagnosed with SCDS. I thought I could live with the condition. It eventually tired me out so much I resorted to having the surgery..... All I can say is if you're thinking about having the surgery and you need to,, do it. It's only been a month since my surgery and I feel like I'm getting my life back. There is a trade off of some of the symptoms and don't let anyone tell you theres 100% success and 100% of their symptoms are gone. You might have ringing in your ear, pressure from time to time. It's been about 2 months since my surgery and I don't have all of my balance back. Other SCDS surgery patients say it's going to take around 3-6 months to recover. I have good days and days that symptoms show up. ex. I can still hear my eye move. In short it's a pain to do the surgery but I'm soooo glad I did. I can already tell I'm feeling better than I did before the surgery. It might sound like a scary surgery but it's not as bad as it seams. You'll be fine.
Loading...
I'm in the middle of deciding if I want the surgery. I have it in both ears but symtomatic in 1 ear. I also have a high riding jugular bulb that nothing can be done. What is the recovery time? I was told in the hospital for 3 -4 days and I was not told how long it would take me to get back to work. I would really like to talk to someone that has had the surgery before I make my decision.
Loading...
RustieB wrote:
Suzy - I too am in the NW England. Could you tell me WHERE you had the op please.
-rty
Suzy H wrote:Hi
I've only just come across this web site. I'm from N West England.
I noticed dizzyness a year and a half ago. After much tests and a few consultants, I was sent for a CT scan and diagnosed with SCD. I had the operation on the 28th May 2008. I was told I would be discharged the day after - however I wasn't able to walk unaided until 1st June and only sent home from hospital on 2nd June. I have suffered terrible dizzyness since the operation. If I had to mark it on a scale 1 being good then my dizzyness prior to the operation was a 5 but now I'd say it is a 9. I haven't yet started back in work - so it's now been 6 weeks!! Work aren't very happy with me. I was never pre-warned that I could be this bad. I am on anit-sickess tables and constanly feel dizzy and sick. I am unable to drive and have terrible headaches. I have been told that the operation was a success but I have still yet to see the benefits. I just wish I was warned about the recovery time prior to the operation - it would have made me more prepared.
How long did it take you to recover? How are you feeling now?
Loading...
Hi!
My symptoms started in 2001. I visited 2 ENT "specialists", both of whom said there was nothing wrong with me. It all started with a "cracking"sound in my ear w/dizziness. I could "hear " myself as when you hold your ear closed! They found nothing. That lasted about 2 years when a "NEW" symptom started, when saying any word with "M" ie HAMBURGER, MONEY etc., my right eye would quiver. This was visible to anyone who I was speaking to. Next came "Hearing My Heart" beat and I was very anxious about that. My heart then began skipping an average of 18 beats per minute.
Visited a Cardiologist who put me on Bisoprolol and that did the trick.
Finally found a doctor here in Pittsburgh, Dr. Hirsch, he did a CT and hearing tests. The CT proved that I was NOT crazy...my cochlea was cracked, the blood barrier was broke and therefore, my brain was lying on the cochlea causing me to HEAR everything going on INSIDE of me %-)
Dr Hirsch told me he preferred NOT to operate until I could no longer stand it since there were so few operation of this kind performed. I waited another (almost) 11 months...I woke up one night and when I "looked" around, I could HEAR my eyes move. Within 2 weeks, I was operated on at Eye & Ear Hospital by Dr. Hirsch and the Neurosurgeon, Dr Kasaim. I was home in 3 days...looked bad since they removed part of my scull and screwed me back together...Now...I can hear what I should be hearing and I feel great. I would recommend having this done :-D
My symptoms started in 2001. I visited 2 ENT "specialists", both of whom said there was nothing wrong with me. It all started with a "cracking"sound in my ear w/dizziness. I could "hear " myself as when you hold your ear closed! They found nothing. That lasted about 2 years when a "NEW" symptom started, when saying any word with "M" ie HAMBURGER, MONEY etc., my right eye would quiver. This was visible to anyone who I was speaking to. Next came "Hearing My Heart" beat and I was very anxious about that. My heart then began skipping an average of 18 beats per minute.
Visited a Cardiologist who put me on Bisoprolol and that did the trick.
Finally found a doctor here in Pittsburgh, Dr. Hirsch, he did a CT and hearing tests. The CT proved that I was NOT crazy...my cochlea was cracked, the blood barrier was broke and therefore, my brain was lying on the cochlea causing me to HEAR everything going on INSIDE of me %-)
Dr Hirsch told me he preferred NOT to operate until I could no longer stand it since there were so few operation of this kind performed. I waited another (almost) 11 months...I woke up one night and when I "looked" around, I could HEAR my eyes move. Within 2 weeks, I was operated on at Eye & Ear Hospital by Dr. Hirsch and the Neurosurgeon, Dr Kasaim. I was home in 3 days...looked bad since they removed part of my scull and screwed me back together...Now...I can hear what I should be hearing and I feel great. I would recommend having this done :-D
Loading...
Hi
Hope someone can help me, I don't know what else to do. My daughter is 15 now and has been experiencing all the symptoms on SCDS including nystagmus, since she lost conciousness following a head injury just before Christmas. The MRI and CT scans (although I don't believe the resolution would have been high enough to pick up SCDS) were unremarkable and hearing tests showed only minor hearing loss. The headaches and Tinnitus are unbearable as are the dizzyness and nausea. She is only able to manage a few hours of school before her symptoms become unbearable and she is sent home. She isn't sleeping at night, hence she is constantly fatigued and is losing weight.
What do you do when the Consultants (St Georges hospital, South London) say all the tests appear fine? My daughter is clearly not fine and says she feels like her body is winding down. I don't have the money to pursue this privately and have to rely on the NHS. I am sick of being fobbed off and being passed from department to department.
Anyone have any advice?
V.Worried Mum
Hope someone can help me, I don't know what else to do. My daughter is 15 now and has been experiencing all the symptoms on SCDS including nystagmus, since she lost conciousness following a head injury just before Christmas. The MRI and CT scans (although I don't believe the resolution would have been high enough to pick up SCDS) were unremarkable and hearing tests showed only minor hearing loss. The headaches and Tinnitus are unbearable as are the dizzyness and nausea. She is only able to manage a few hours of school before her symptoms become unbearable and she is sent home. She isn't sleeping at night, hence she is constantly fatigued and is losing weight.
What do you do when the Consultants (St Georges hospital, South London) say all the tests appear fine? My daughter is clearly not fine and says she feels like her body is winding down. I don't have the money to pursue this privately and have to rely on the NHS. I am sick of being fobbed off and being passed from department to department.
Anyone have any advice?
V.Worried Mum
Loading...
I am 4 days since the surgery and while it has not been a walk in the park it is already worth it. I have gone 4 years with the dizziness, the hearing loss, the heart beating in my head, the echoing of my own voice and after 3 specialists telling me basically i was nuts I went to the Mayo Clinic in Phoenix Arizona. I saw Dr. Baria and within one day had the diagonsos. It was done through a high resolution CT scan of my ears. I had the surgery done by Dr. Harold Kim of the Wilson Ear Clinic in Portland Oregon. He came highly recommended as one of the best. Dr. Kim required a full map CT prior to surgery that gave a three dimensional view of my entire head - he feels very strongly about this and the results have been great. I no longer hear my heart beating or the echoing. My hearing is still affected but he tells me that is to be expected until the swelling subsides. I have about a four inch incision that runs from the top of my right side to just around and down the front of my ear. I was in the hospital for 2 days. One in intensive care, the pain has not been bad at all. the only true issue I have had is severe nausea from the pain medicine Viactin. I now only take extra strength tynenol and only twice a day. Is it worth it yes. Is is scary Heck yes but less then a week from the surgery I can say I would do it again if the other ear needed it.
Loading...
I am a 50 year old mle and I was finally diagnosed with SSCD last year after a bunch of MRI and CT scans.
I won't waffle too much but it started about 16-17 years ago in Coventry when I discovered that singing or humming certain notes made my horizon tilt. The louder I sang/hummed, the more the tilt. It started in just the right ear.
Several GP and ENT referrals failed to come up with anything worthwhile and the years began to tick by with me just living with it.
Over time the effect became slightly more noticeable and I found that loud noises would have the same effect (horizon jump) but it would pass very quickly with no dizziness or anything.
Fast forward a few years (moved to Nottingham) and I noticed that I began to hear things "in my head". I'll use the present tense here because I still have all these effects. Like when I move my eyes I can hear a "rubbing" sound of, presumably, the eye-balls moving in the sockets. Short "twitchy" sounds as my eyes flick around looking at different things or a continuous rubbing if I move them continuously. I can hear a similar sound on moving my head, presumably from the neck joint(s). With my head in certain positions I hear a sound similar to a motor running ut if I move my head even slightly it stops. I assume that this is where the muscles in the neck are working against each other to keep the head steady and cause some vibration.
Blood flow is another thing I can hear. Being aware of one's pulse in one's head is, I believe, quite common as in pounding in the ear particularly after excercise but even at rest, with my head in certain positions, I can hear blood flow as a faint "ooh-ing" sound. Again a slight move of the head makes it stop.
I am super aware of my breathing and swallowing - both quite loud.
Eating is also very loud and crunchy things drown-out most sound sources (TV, radio, etc.).
Speaking clearly is a little awkward too since regulating one's own volume is tricky with the amplified internal feedback.
I noticed that my left ear joined-in about 4-5 years ago.
Now I find that I am very, very easily distracted by any "new" sound, so it's very hard to concentrate on anything if there are other things going on.
Hearing tests are a nightmare of breath-holding and trying not to move and, if I can do all that, the results are pretty normal for my age.
Over the years I went back to the GP each time I detected something significantly new/different.
About 8-9 years ago, one consultant declared that I had a "patulus eustacion tube" (drainage tube from ear to throat - also plays a part in the old hold-your-ears-and-blow-to-equalise-pressure malarkey) which meant the tube was always open. Figuring that this was the cause of the sound transmission, I was fitted with a grommet in my right ear-drum.....didn't help one bit.
One day, I heard a trailer for a programme on Radio 4 that included the words "loud nosies made my horizon jump" and that led me to the notion of Tullio's Syndrome.
I took this for another "roll of the NHS dice" and ended up with a referral to a Dr Meehan who finally (thankfully) connected the dots, did the scans and I could at last name my demon (SSCD).
Fortunately, I have not had much in the way vertigo/dizziness. Quite rarely (usually if really, really tired) I'll find I get a moment of two of "light-headed un-ease" but this is not balance-affecting and doesn't really stop me from doing stuff.
I also noticed some diplacusis ears hearing slightly different pitches (which for an amateur musician is very annoying) but the effec tof that has been quite mild.
But I have to wonder if this is the way it's going to go in the next years (more dizziness plus other effects.
I'm currently thinking that the surgical options are too invasive and the risk of worse damage is a deterrent.
I have been living with the symptoms for quite a while now so I'll probably continue to wait and see if it gets worse.
Anyway, I just wanted to get my experience written down.
As you were. :O)
I won't waffle too much but it started about 16-17 years ago in Coventry when I discovered that singing or humming certain notes made my horizon tilt. The louder I sang/hummed, the more the tilt. It started in just the right ear.
Several GP and ENT referrals failed to come up with anything worthwhile and the years began to tick by with me just living with it.
Over time the effect became slightly more noticeable and I found that loud noises would have the same effect (horizon jump) but it would pass very quickly with no dizziness or anything.
Fast forward a few years (moved to Nottingham) and I noticed that I began to hear things "in my head". I'll use the present tense here because I still have all these effects. Like when I move my eyes I can hear a "rubbing" sound of, presumably, the eye-balls moving in the sockets. Short "twitchy" sounds as my eyes flick around looking at different things or a continuous rubbing if I move them continuously. I can hear a similar sound on moving my head, presumably from the neck joint(s). With my head in certain positions I hear a sound similar to a motor running ut if I move my head even slightly it stops. I assume that this is where the muscles in the neck are working against each other to keep the head steady and cause some vibration.
Blood flow is another thing I can hear. Being aware of one's pulse in one's head is, I believe, quite common as in pounding in the ear particularly after excercise but even at rest, with my head in certain positions, I can hear blood flow as a faint "ooh-ing" sound. Again a slight move of the head makes it stop.
I am super aware of my breathing and swallowing - both quite loud.
Eating is also very loud and crunchy things drown-out most sound sources (TV, radio, etc.).
Speaking clearly is a little awkward too since regulating one's own volume is tricky with the amplified internal feedback.
I noticed that my left ear joined-in about 4-5 years ago.
Now I find that I am very, very easily distracted by any "new" sound, so it's very hard to concentrate on anything if there are other things going on.
Hearing tests are a nightmare of breath-holding and trying not to move and, if I can do all that, the results are pretty normal for my age.
Over the years I went back to the GP each time I detected something significantly new/different.
About 8-9 years ago, one consultant declared that I had a "patulus eustacion tube" (drainage tube from ear to throat - also plays a part in the old hold-your-ears-and-blow-to-equalise-pressure malarkey) which meant the tube was always open. Figuring that this was the cause of the sound transmission, I was fitted with a grommet in my right ear-drum.....didn't help one bit.
One day, I heard a trailer for a programme on Radio 4 that included the words "loud nosies made my horizon jump" and that led me to the notion of Tullio's Syndrome.
I took this for another "roll of the NHS dice" and ended up with a referral to a Dr Meehan who finally (thankfully) connected the dots, did the scans and I could at last name my demon (SSCD).
Fortunately, I have not had much in the way vertigo/dizziness. Quite rarely (usually if really, really tired) I'll find I get a moment of two of "light-headed un-ease" but this is not balance-affecting and doesn't really stop me from doing stuff.
I also noticed some diplacusis ears hearing slightly different pitches (which for an amateur musician is very annoying) but the effec tof that has been quite mild.
But I have to wonder if this is the way it's going to go in the next years (more dizziness plus other effects.
I'm currently thinking that the surgical options are too invasive and the risk of worse damage is a deterrent.
I have been living with the symptoms for quite a while now so I'll probably continue to wait and see if it gets worse.
Anyway, I just wanted to get my experience written down.
As you were. :O)
Loading...
hi im new to this forum but i was diagnosed with this superior canal problem in both ears i have a hole in each temporal bone....it all started when i was pregnant with my second child i was four months pregnant with my daughter and i got on the computer after i came home from college and all of a sudden i got super lightheaded and dizzy and every since then which was november of 2009 i have been super dizzy lightheaded having brain fog and just extremely tired and exhausted all day long i was wondering has anyone else that has had this problem been dizzy 24-7 with it?? i also have the pressure and ringing in my ears like crazy but i was just wondering if my symptoms seems similar to everyone else because i wake up feeling floaty/lightheaded and go to bed feeling that way also..im set to have surgery in january and i was wondering if anyone has had good outcome?? thanks alot!!!
Loading...
Have you had the surgery with Dr. Atkins yet? I have also been diagnosed and went to see him. Just wondering how you are now.
Loading...
jrl wrote:
Have you had the surgery and did you have Dr. Atkins preform it? I have been diagnosed with SCD and went to see him as well. Just wondering how you are now?
Thanks!
Loading...
http://www.facebook.com/SuperiorSemicircularCanalDehiscence I had surgery for it and it's been almost one year for me.Best thing i did.
Loading...
How can i send an e mail to speak about our disease (scds)? I´m from Portugal. Filomena
Loading...
I to0 live in NW England and have SCD.Finally diagnosed after 12 years and wonder where op. was performed?
Loading...
Hi Suzy.I too haveSCDS on right side and offered the op. but am scared of the craniotomy.Am also suffering what I'm told is perenial rhinitis, running nose, sneezing etc.I too live in NW England and wonder where you had the op.Regards,Carol in Bradford
Loading...