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Old 02-22-2009, 04:56 AM   #1
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Ilovemypets HB User
Smile Semi- circular canal occlusion surgery patient

Hi.

I have come to these boards for years for many reasons and find it friendly and very informative.

On 2/13/09 I had a right semi-circular canal occlusion performed after suffering from ever worsening BPPV, first diagnosed in 2002. After searching the board I see that no one seems to have gone through this and shared it. If I am wrong, please point me to it so I can learn. If I am right, maybe I can share my experiences with you.

In 2002 I was told live with the BPPV (right) or go deaf in that ear and be paralyzed in the face. I have been unable to work at any level and found my condition worsening. When I was re-tested the BPPV appeared in both ears. I was told this is most likely becasue the right is so much worse it was "shadowing" on the left.

Anyway, I am nine days post op and have absolutely no vertigo when I perform the former triggering moves. This has been replaced with what the doctor terms "disorientation" which WILL clear up in an average of two to six weeks. I have no pain now, even at the incision site. My ear feels full and plugged, but I can hear out of it!!!!!!! This will go away eventually too.

I have not had my follow-up with my doctor yet so I can only offer How I feel. I wish I would have done this years ago!

 
Old 02-22-2009, 01:30 PM   #2
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ssdizzy HB User
Re: Semi- circular canal occlusion surgery patient

Thank you so much for posting - I have recurrent BPPV - no where near the severity of what it sounds like you have had. But, I've been told that the surgery may be an option for me if things continue down the path they have been going. I've wondered myself about the realities of the surgery, and since it doesn't seem like there are too many out there who have had it - I really appreciate you posting your experience. I hope your recovery continues to go smoothly. Please keep us posted!!

 
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Old 02-22-2009, 04:37 PM   #3
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Re: Semi- circular canal occlusion surgery patient

Hi ssdizzy.

There sure isn't a lot of patient experience out there that I could find to learn from. If the doctors are considering you for this don't dismiss it out of hand like I did for so many years. My ENT referred me to another specialist who performed more tests and movements to try to fix the crystals, with no luck. My surgeon said he has not had a patient yet with hearing loss or facial nerve problems, He has performed many of these with excellent outcomes.

I had to spend one night in the hospital and was released the next morning. My major pain was in my neck muscle under my ear, like a real bad stiff neck that was much better in three days. Also tylanol #3 handled the pain.

While I no longer have vertigo, the disorientation I have feels kind of like a drunk trying to walk. I can do dishes and prepare most meals. I have a ten pound weight limit so I haven't tried to do much else in the housework department. The Doctor said my brain will learn to function without that canal and I will be a "balanced" person after recovery.

I am glad to share about this if it helps anyone, people on these boards have been so much help to me for a long time.

 
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Old 03-02-2009, 06:18 AM   #4
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Re: Semi- circular canal occlusion surgery patient

I see that people are reading this so I thought I would update my progress.

At my two week follow-up my doctor said I was progressing very well. I have no pain at all. My ear still feels stuffed, I have a very slight ringing but not enough to drive me crazy. This is slowly improving too. I have fluid behind my eardrum which is expected, no infection.

I still have a ten pound limit. He said I could still cause either hearing damage or alter the success of the surgery by dislodging the plugs at this stage. I have another follow-up on 3/13, at which time he plans to perform some tests to try to bring on the vertigo. I roll over in bed and do not have vertigo now, something I have not been able to do for years.

My rehab is all at home. I have had eye excercises involving rotating my head while staring at objects. Slow walking and now I am to progress to trying to bounce and catch a ball!

If I had a job he would be writing me off work and of course I am not able to drive.

Performing my rehab and/or walking around the house, doing simple chores for too long makes me dizzy (NOT vertigo). I also have gastro issues so this brings on nausea, bowels, and sometimes vomiting. The doctor said this was normal and I probably push myself too much (I do).

This weekend I attended church and went out to dinner afterward. Riding in a car was uncomfortable and I needed my husband's arm to walk straight but overall the outing was a success!

 
Old 04-30-2009, 08:56 AM   #5
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Re: Semi- circular canal occlusion surgery patient

Hi

I had this surgery 2 weeks ago and have just come across your posts and would really like to know how you're doing now and what your recovery was like? I've found the first 2 weeks really tough and felt most unwell but think I'm starting to turn a corner. I do also have an underlying vestibular problem so this op was only ever going to treat the recurrent BPPV and not be a complete cure.

At the moment I can potter around the house and do some chores but do get tired easily and am very disorientated. My ear also feels very full and I think this is making me feel quite woozy at times.

How are you doing now? I've let work know that I'll need at least another 2 weeks off but not sure when I'll be able to drive, work again.

Anyway, I struggled to find much patient experience about this op before I had it done but was excited to come across your post now.

Kind regards
alison

 
Old 05-03-2009, 07:10 PM   #6
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realbelle HB User
Re: Semi- circular canal occlusion surgery patient

Please share with us what state are you in? I was dx with bppv in 2003. After several epley's, the vertigo did stop. But, I was left with this constant 24/7 motion. Feel like a drunk trying to walk. In the stores, it feels like the floors are moving on me or that my shoes are very wet and I am slipping. 99% of the time I have nausea. I feel like I am NEVER still but in motion. I can't work nor go anywhere by myself. If surgery would fix me, I'd do it in a heartbeat. Please--what lead you to have the surgery? I asked what state because I have not fouind anyone that knows anything about this mess. God bless and I pray for you both a full recovery!!! Belle

 
Old 05-04-2009, 05:32 AM   #7
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Re: Semi- circular canal occlusion surgery patient

Hey there RealBelle

I first had balance problems back in 2002...dizzy spells, feeling spaced out and problems in busy/bright environments like supermarkets. I'm quite lucky in that I live quite near a balance centre and underwent a number of tests. I was told that I had a vestibular disfunction and started a course of VRT (physio exercises). This pretty much sorted me out apart from the odd cold or when I was really tired, but nothing debilitating.

Then, in Jan 07 I was driving on the motorway and had a horrible dizzy spell..really scary. This then continued and I had false motion sensations, a bobbing up and down sensation, feeling spaced out, marshmallow legs, extreme nausea (this is one of my biggest problems as I've had a vomiting phobia since I was 5yrs old...am never without my sea bands!), dizzy spells and again really struggled in certain places. I was referred back to the balance centre and underwent the same tests. Still diagnosed with this underlying vestibular problem with strong visual preference but from May that year I started to feel a lot worse. I was then told I also had BPPV which very often goes hand in hand with other balance problems but I'd also had a car accident a couple of months before which could well have caused it. For the next 21 months I had about 14 appts where I had 1-3 epleys carried out each time...I pretty much always responded to them but the BPPV would always come back either days or weeks later. The BPPV meant that my physio for the underlying problem was ineffective and the symptoms got so much worse and very debilitating - couldn't work very well, wouldn't drive, wouldn't go out...I guess very familiar with you. Anyway, it was clear that I still had BPPV and so surgery was the very last resort...my consultant doesn't do the op very often and said he wouldn't consider it till i was desperate..which I was.

Sorry for all the q's coming up...You say you did have BPPV and the vertigo has gone...do you think you still have BPPV? Are you doing VRT? At one point I became so anxious I couldn't tell at times whether I was dizzy first then anxious or the other way round...do you find yourself anxious too? This stopped me doing the things that would make me better. Are you seeing a specialist? This seems to be a bit of a lottery wherever you are in the world and can make all the difference.

I can really relate to how you feel..have been stuck with horrible debilitating symptoms for well over a year now. It doesn't help that it's kind of an invisible illness...I saw my best friend yesterday for the first time after the op and she gasped when she saw me and said I look normal, so much better than she thought following our conversations about how I felt after the surgery. I sometimes think if it was something physical that people could see you'd get a lot more understanding.

alison x

Last edited by alisonp; 05-04-2009 at 05:46 AM.

 
Old 01-31-2011, 08:29 AM   #8
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Re: Semi- circular canal occlusion surgery patient

I would love to hear how you are doing now? Has your balance improved? I had surgery in Feb 2010 and although the vertigo stopped instantly, and the operation was deemed a success by my consultant, I continue to be very unbalanced and cannot walk for more than about 10 minutes before I am stumbling across the pavement like a drunk. I also feel dizzy and nauseous most of the time - in many ways I would prefer to have the vertigo back as at least that came and went!

I am also mindful that I have BVVP in the other ear as well and I am unsure how much this is affecting how I feel. I would be interested to hear from anyone who has had canal occlusion on both ears to see how they are afterwards, as I have to make a decision to have the second operation in the next couple of weeks.

 
Old 04-02-2011, 12:41 PM   #9
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Re: Semi- circular canal occlusion surgery patient

Have just come across this old post and saw there has been some more recent responses. I had a revision op in September 2010 and fingers crossed it has done the trick and no more left sided BPPV. The op did cause me to have BPPV in my right ear which was awful but epleys and brandt-daroffs were successful and I've been crystal free for several months now. I'm now better than I've been for some years. The op is still quite rare and I think this is because not many surgeons know how to do it and it is a last resort op due to the seriousness of the risks of the op.

 
Old 04-04-2011, 05:44 AM   #10
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Re: Semi- circular canal occlusion surgery patient

hi,

i'm glad that you're doing well!

so after the op you don't have any symptoms of bppv anymore?
can you roll, lay, your head in any position?
you don't get anymore vertigo?

but occasionally do you get any lightheadness or dizziness?
can you live your life normally and sleep without waking up to bppv?

sorry for all the questions... i'm just so curious cause someone else said that they regret having this surgery... cause he's constantly dizzy and can't do anything...

and someone else says that she still gets vertigo but doesn't last long...

i'm a little confused and worried... if this is something i should do...

thankyou^^

 
Old 04-10-2011, 12:06 AM   #11
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Re: Semi- circular canal occlusion surgery patient

Hi Maryanne

I am not 100% but am getting better all the time....with setbacks too which is always the case I find with vestibular problems.

My main problem is that the drilling during the operation caused me to have BPPV in my good ear. It wasn't as troublesome as my other ear was and did actually respond well to brandt-daroff exercises. I was clear for several months and was able to sleep on both sides, lean over, look up etc etc. I think the BPPV returned a few days ago. Brandt-daroff exercises seem to have cleared it though again fingers crossed (for me they make me feel less off than epleys).

I'm still doing physio to see how much better I can get (I have underlying damage due to VN). But...I have gone from major anxiety, hardly leaving the house, struggling to work, never socialising to being back at work part-time, going out and keeping up with a very active 1 year old. I think tiredness is my major trigger and do great when I get decent sleep.

So, for me it was worth it. It's a last resort surgery with a horrible recovery period but I was desperate and it was worth the possible risks. It's hard to get a lot of info on this op...and most people who have the op dont just have BPPV (I find that those just with BPPV don't find it so troublesome and it doesn't affect their life so much) so the op is never an instant cure to everything and like me was the first step to being able to get a stable platform to compensate.

You have to remember that the surgery blocks one of the canals and thus certain movements that would normally rely on that canal are going to be blocked. You do get a weird sensation...like a blip where your brain doesn't know what is happening. You do eventually compensate for this but it takes a good while.

How long have you had BPPV? Do you not respond to epleys, brandt-daroffs etc? I think you have to weigh up how it is affecting your life as a whole as to whether surgery is an option.

There isn't much patient experience around re this op and whilst lots of info is good (I trawled the internet many times to try and find out more) it does depend on the person's overall diagnosis as to the results and their recovery. I've read that people are ok after a few days...for me I was severely off balance for weeks. I couldnt lift my 5 month old baby for weeks. It wasn't till week 5 after the op that I started to think that maybe it would get better. It is a major op that opens up your balance organ. People react differently depending on their particular problems.

Hope this helps and let me know if you have any questions.
alison

Last edited by alisonp; 04-10-2011 at 12:33 AM.

 
Old 04-17-2011, 12:00 PM   #12
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lacemaker HB User
Re: Semi- circular canal occlusion surgery patient

Hi I have just had the canal occlusion operation on 30th March 2011 after two years of misery with 15 epley moves performed before my surgeon would agree to let me have the operation. I must say at the moment I feel I have swaped one lot of symptoms for another but am trying to look long term that things can only get better! Im off back to hospital for my three week appointment. At the moment I still get nausea and a different kind of dizzy sensation more a feeling of being unbalanced a lot of fatigue and if I try to do housework I soon feel very nauseous and dizzy. How long does this last and can you explain to me does the plug in the ear have to be taken out?! I would be grateful if you would share your experience with me. thanks

 
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Old 04-17-2011, 09:43 PM   #13
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alisonp HB User
Re: Semi- circular canal occlusion surgery patient

Hi Lacemaker

I felt pretty rubbish for some weeks after the op and it was around week 5 that I suddenly started to feel so much better. It's a pretty intrusive surgery and you need time to heal properly...then to compensate. The plug in the canal stays there....definitely doesn't get taken out. At the 3 week mark I still had terrible tinnitus and was very off balance.

Good luck in your recovery and hope it's done the trick.
alisn

 
Old 04-18-2011, 03:30 AM   #14
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lacemaker HB User
Re: Semi- circular canal occlusion surgery patient

Hi alisnop

Thank you for your quick reply. I guess I must be a patient patient as I am tending to overdo things. but at least you have given me hope that the symptoms I now have will gradually go away."things can only get better"!

 
Old 12-17-2011, 06:45 PM   #15
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ezrider52 HB User
Re: Semi- circular canal occlusion surgery patient

Hi,i had my surgery on 9-8-2011 i wanted know are you doing,I'm having a kind of drunk sensation I'm just wondering have you gotten any better.I know everybody may respond to surgery differently ,hoping i can find a little hope in getting back to normal

 
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