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Old 03-10-2009, 05:01 PM   #1
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Wilc516 HB UserWilc516 HB User
I have bilateral vestibular loss

First off, sorry for the long post.

I am a "29" year old female (go with me here....). I've been healthy my entire life, never broke a bone, never been in the hospital, never had more then normal colds and have never experienced any significant health issues.

Around mid-December, I began to feel not right. I couldn't put my finger on exactly what it was, but where I had been fine, I started to feel a fog in my head but not enough to be a concern.

I basically ignored it for a few weeks until symptoms of BPPV really kicked in. This lasted a week or so and I eventually went in to see my regular doctor since I didn't know what I was dealing with. They sent me for an MRI and blood work. When the results came back, I was referred to an ENT.

I saw the ENT, he did the Epley maneuver and I felt great the first day. The next morning, I was left with this even worse feeling of being not right. I was in the pharmacy, couldn't stand straight, couldn't see things, when I walked, everything in my sight "bounced" with me. The ENT said to give it some time, which I did. I went for a 2nd Epley treatment even though the vertigo symptoms had subsided. I had no dizziness or spinning feelings. I was referred to my first neurologist who looked at my MRI and concurred what I was dealing with was remnants of vertigo. I told him over and over that it wasn't the same as what I had felt before and he basically dismissed me.

So after about a month of still not feeling right, my head feeling full, being unable to focus on anything when I moved and having no balance, I went back to my ENT who referred me to the Head Professor at Yale of the Otolaryngology/Surgery Dept. I have severe oscillopsia and Nystagmus

I had a VNG test done 2 weeks ago and saw another neuro along with the doc. The results were that I had zero function in either of my inner ears. I am basically a total loss. They opted to put me on a strong dose of steroids for 2 weeks to see if it was an auto-immune disease and sent me for for some more advanced blood work.

I went back to Yale yesterday, re-took the tests and still have zero function in either ear. They tell me there is nothing medically that can be done and referred me to VRT. My doctor was frustrated and said he'd devoted his entire life to fixing balance issues, but unfortunately, there was nothing medically that can be done for me. They don't understand why it came on so suddenly and severely. In the course of 2 months I went from one extreme to the other. From what I'm read, this is somewhat normal (having no explanation).

Tomorrow I have a consult with a rehab/PT place to see what they might be able to do for me.

Are there other people with similar situations? Have you been given any other course of treatments?

Has the VRT helped to make life easier to live? I am having trouble with just regular life stuff; grocery shopping, driving, reading, walking....

Anything others can share would be most helpful in allowing me to adjust to the new reality that I may never be the same.

Thanks!

 
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Old 03-12-2009, 05:49 PM   #2
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Re: Anyone else with bilateral vestibular loss?

Yikes - am I the only one with a total loss in both ears? My doctor said it was unusual, guess it was more so then I thought!!

 
Old 03-29-2009, 01:21 PM   #3
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Re: Anyone else with bilateral vestibular loss?

I am so sorry you are going through this. I am just a few months ahead of you. It all hit me in late October. I am a 46 year old mother of 3 - (22, 18 and 13). Thank goodness they are old enough to care for themselves because I have been completely useless! Around four months after the onset I began to turn the corner. Certainly not well, but it was as if brain kicked in and began to accept the changes which allowed me to function at an improved level. For instance, I began driving and grocery shopping. I have been seeing a Neurotologist which I will elaborate on if you'd like and a Neurologist for Migraine management. My story is very long but I tried a steroid course, Epley and ended up having perilymphatic fistula surgery two weeks ago. I'll be recovering for a while so there's no telling how successful at this point. I was not willing to live with daily headaches, dizziness and fogginess without trying surgery. We chose to do the worse ear first. Feel free to ask me questions and let me know if you want a referral to my doctor. People come from all over the world to see him. He is in Baton Rouge, Louisiana.

 
Old 03-29-2009, 02:52 PM   #4
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xtine04 HB User
Re: Anyone else with bilateral vestibular loss?

wow. how r u feeling after surgery? i suspect that I have a PLF myself.

 
Old 03-29-2009, 06:10 PM   #5
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Re: Anyone else with bilateral vestibular loss?

Quote:
Originally Posted by mvoelkel View Post
I am so sorry you are going through this. I am just a few months ahead of you. It all hit me in late October. I am a 46 year old mother of 3 - (22, 18 and 13). Thank goodness they are old enough to care for themselves because I have been completely useless! Around four months after the onset I began to turn the corner. Certainly not well, but it was as if brain kicked in and began to accept the changes which allowed me to function at an improved level. For instance, I began driving and grocery shopping. I have been seeing a Neurotologist which I will elaborate on if you'd like and a Neurologist for Migraine management. My story is very long but I tried a steroid course, Epley and ended up having perilymphatic fistula surgery two weeks ago. I'll be recovering for a while so there's no telling how successful at this point. I was not willing to live with daily headaches, dizziness and fogginess without trying surgery. We chose to do the worse ear first. Feel free to ask me questions and let me know if you want a referral to my doctor. People come from all over the world to see him. He is in Baton Rouge, Louisiana.
Thank you for sharing your situation. I am told by pretty much everyone I speak to in the medical field that having a total bilateral loss is highly unusual. Did the surgery help you? I am not sure that I have what you were treated for, but I'm not sure that I don't either!!

My problems are also about 4 months in and I am adapting to this being the new me. Yesterday was the first time I tried to work in my flower gardens. It didn't go so well. I'm rather depressed to think I will never be able to fully function in the way I used to be able to. I'm not one who asks for help easily so its difficult for me.

I know how you feel, I can function, but having blurred vision, no way to walk straight, headaches, a full feeling in my head, etc. is no way to live. My docs told me that there was nothing medically that could be done, that I just had to retrain my brain to function without my ears.

Did a CT scan detect the perilymphatic fistula?

 
Old 03-29-2009, 06:16 PM   #6
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Re: Anyone else with bilateral vestibular loss?

I guess they're saying nothing "medically" to help you meaning no drugs/surgery, but rehab can make a huge difference. It will be slower progress and you may not get to 100% but you can certainly get so much of your functioning back. It can be difficult, especially because you need to worsen your symptoms in order to get them better, but it DOES work. Good luck!

 
Old 03-29-2009, 06:41 PM   #7
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Re: Anyone else with bilateral vestibular loss?

Hi there! I'm so sorry you are dealing with this miserable condition. I just wanted to add that it seems to me that a virus may be the culprit, although I also wonder if migraine could have played a role. It can affect the inner ear and cause things like sudden deafness--sometimes it goes and comes back and sometimes it just goes. Vestibular therapy can be very helpful for all of these conditions. Does your doc have a good rec for you? If not, see VEDA web site. I really don't know if migraine could be implicated in your issue, but I can tell you that many of us with inner ear or inner-ear-like conditions find out that migraine of all things is behind it or complicating it. Anti-migraine meds can help that, so it might be worth a shot to try something like an SSRI. You also might want to call Dr. Hain in Chicago for his two cents. He's a national expert, so he might have some other ideas.

Take care, Violet

 
Old 03-29-2009, 09:03 PM   #8
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mvoelkel HB User
Re: Anyone else with bilateral vestibular loss?

Quote:
Originally Posted by Wilc516 View Post
Thank you for sharing your situation. I am told by pretty much everyone I speak to in the medical field that having a total bilateral loss is highly unusual. Did the surgery help you? I am not sure that I have what you were treated for, but I'm not sure that I don't either!!

My problems are also about 4 months in and I am adapting to this being the new me. Yesterday was the first time I tried to work in my flower gardens. It didn't go so well. I'm rather depressed to think I will never be able to fully function in the way I used to be able to. I'm not one who asks for help easily so its difficult for me.

I know how you feel, I can function, but having blurred vision, no way to walk straight, headaches, a full feeling in my head, etc. is no way to live. My docs told me that there was nothing medically that could be done, that I just had to retrain my brain to function without my ears.

Did a CT scan detect the perilymphatic fistula?

 
Old 03-29-2009, 09:16 PM   #9
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mvoelkel HB User
Re: Anyone else with bilateral vestibular loss?

Quote:
Originally Posted by Wilc516 View Post
Thank you for sharing your situation. I am told by pretty much everyone I speak to in the medical field that having a total bilateral loss is highly unusual. Did the surgery help you? I am not sure that I have what you were treated for, but I'm not sure that I don't either!!

My problems are also about 4 months in and I am adapting to this being the new me. Yesterday was the first time I tried to work in my flower gardens. It didn't go so well. I'm rather depressed to think I will never be able to fully function in the way I used to be able to. I'm not one who asks for help easily so its difficult for me.

I know how you feel, I can function, but having blurred vision, no way to walk straight, headaches, a full feeling in my head, etc. is no way to live. My docs told me that there was nothing medically that could be done, that I just had to retrain my brain to function without my ears.

Did a CT scan detect the perilymphatic fistula?
My first diagnosis was with an ENT. He said I had Meniere's Disease. My Internal Medicine doctor sent me to a Neurotologist suspecting that it was more complicated and I went through a lot of diagnostic testing. The first course of action was the Epley repositioning, diuretics and significant lifestyle changes. I just wasn't getting better. I have completely altered my life and understand what you mean when you say that you are depressed when you consider that you may never function the same way you always have been able to function. I'm in the same position. I try to imagine not ever being able to do some of the things I love to do and I can't believe it. I'm trying to concentrate on getting better and taking one day at a time.
I think that's the best way to cope right now. Keep me posted. Maybe we can continue to encourage each other!

 
Old 03-29-2009, 09:22 PM   #10
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mvoelkel HB User
Re: Anyone else with bilateral vestibular loss?

Quote:
Originally Posted by xtine04 View Post
wow. how r u feeling after surgery? i suspect that I have a PLF myself.
Too early to know if surgery was a success. It was two weeks and three days ago. I'm just starting to get out a bit. I tried to drive and I got nauseated, tried to shop and got really dizzy. Noise in crowded places is really over stimulating and bothersome. I think I read that you are seeing Dr. Gianoli in Louisiana?

 
Old 03-30-2009, 07:25 AM   #11
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xtine04 HB User
Re: Anyone else with bilateral vestibular loss?

hopefully i will be seeing him. i have a long way to travel since i'm in canada :-)

i suspect that i injured my ear 2 years ago and developed a PLF. the doctors around here don't diagnose PLFs much nor treat them. I am hoping to speak to dr g since he seems to be the authority on this matter.

one of my friends just got the PLF op 6 weeks ago from him.

i hope you continue to improve, i know it's a long road but hopefully this operation will have some success.

regards,
christine

 
Old 03-30-2009, 09:03 AM   #12
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Wilc516 HB UserWilc516 HB User
Re: Anyone else with bilateral vestibular loss?

Quote:
Originally Posted by mvoelkel View Post
My first diagnosis was with an ENT. He said I had Meniere's Disease. My Internal Medicine doctor sent me to a Neurotologist suspecting that it was more complicated and I went through a lot of diagnostic testing. The first course of action was the Epley repositioning, diuretics and significant lifestyle changes. I just wasn't getting better. I have completely altered my life and understand what you mean when you say that you are depressed when you consider that you may never function the same way you always have been able to function. I'm in the same position. I try to imagine not ever being able to do some of the things I love to do and I can't believe it. I'm trying to concentrate on getting better and taking one day at a time.
I think that's the best way to cope right now. Keep me posted. Maybe we can continue to encourage each other!
When you have PLF, do you feel the fluid? I'm wondering how one determines they have that. My ENT was leaning towards MS (which had me really freaked out) which is why he referred me to Yale. I had a nasty bout of vertigo that I thought started all the problems but turned out was just a symptom of my system being out of wack. So I did the Epley which cured the vertigo but the rest of it remains. I just finished up my PT sessions and am left to continue to do the exercises on my own. It is a very frustrating way to exist, thats for sure. Your positive outlook is a good way to be. I'm trying to stay focused on improving but I'm tired of assuring everyone that "I'm fine" and not to take pity on me.

I am retaking the ENG and following up with my octology dr on 4/20. Other then that, I'm just trying to get through each day!

 
Old 03-30-2009, 09:26 AM   #13
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Re: Anyone else with bilateral vestibular loss?

Quote:
Originally Posted by Wilc516 View Post
When you have PLF, do you feel the fluid? I'm wondering how one determines they have that. My ENT was leaning towards MS (which had me really freaked out) which is why he referred me to Yale. I had a nasty bout of vertigo that I thought started all the problems but turned out was just a symptom of my system being out of wack. So I did the Epley which cured the vertigo but the rest of it remains. I just finished up my PT sessions and am left to continue to do the exercises on my own. It is a very frustrating way to exist, thats for sure. Your positive outlook is a good way to be. I'm trying to stay focused on improving but I'm tired of assuring everyone that "I'm fine" and not to take pity on me.

I am retaking the ENG and following up with my octology dr on 4/20. Other then that, I'm just trying to get through each day!
You don't feel the fluid. It was explained to me by my Neurotologist that a fistula forms from the pressure of too much fluid in the inner ear and usually there is an accident or trauma of some sort. I had no idea that was going on. In my case I can't recall any reason I would be in this position other than my symptoms immediately followed a prolonged period of stress. I wanted to add that initially my doctors suspected an auto immune disease. I think I had a virus on top of all of this in the beginning which exacerbated my symptoms and made a diagnosis really difficult for a while.
I hope you don't mind me saying this...You may want to consider taking people up on their offers to help. There is no shame in needing assistance while you are feeling so poorly. This is an extremely difficult time and you shouldn't have to be toughing it out. Be good to yourself. I have found that my friends and family love to feel needed. I just tell them very specifically what I need and I don't think they pity me, they just want to be helpful. Wouldn't you want to be there for them if they were feeling like you feel right now?

 
Old 03-30-2009, 01:39 PM   #14
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xtine04 HB User
Re: Anyone else with bilateral vestibular loss?

Quote:
Originally Posted by Wilc516 View Post
When you have PLF, do you feel the fluid? I'm wondering how one determines they have that. My ENT was leaning towards MS (which had me really freaked out) which is why he referred me to Yale. I had a nasty bout of vertigo that I thought started all the problems but turned out was just a symptom of my system being out of wack. So I did the Epley which cured the vertigo but the rest of it remains. I just finished up my PT sessions and am left to continue to do the exercises on my own. It is a very frustrating way to exist, thats for sure. Your positive outlook is a good way to be. I'm trying to stay focused on improving but I'm tired of assuring everyone that "I'm fine" and not to take pity on me.

I am retaking the ENG and following up with my octology dr on 4/20. Other then that, I'm just trying to get through each day!
quite honestly, when i was at my worst- i had a lot of symptoms of MS..

i can hear liquid flowing thru my ear like water thru a pipe- i hear this when i bend down and then stand up. with a plf, normally you wouldn't be able to tell there is liquid because the amount of perilymph you leak is very little.

 
Old 03-30-2009, 06:47 PM   #15
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Re: Anyone else with bilateral vestibular loss?

Quote:
Originally Posted by mvoelkel View Post
You don't feel the fluid. It was explained to me by my Neurotologist that a fistula forms from the pressure of too much fluid in the inner ear and usually there is an accident or trauma of some sort. I had no idea that was going on. In my case I can't recall any reason I would be in this position other than my symptoms immediately followed a prolonged period of stress. I wanted to add that initially my doctors suspected an auto immune disease. I think I had a virus on top of all of this in the beginning which exacerbated my symptoms and made a diagnosis really difficult for a while.
I hope you don't mind me saying this...You may want to consider taking people up on their offers to help. There is no shame in needing assistance while you are feeling so poorly. This is an extremely difficult time and you shouldn't have to be toughing it out. Be good to yourself. I have found that my friends and family love to feel needed. I just tell them very specifically what I need and I don't think they pity me, they just want to be helpful. Wouldn't you want to be there for them if they were feeling like you feel right now?
Funny you mention stress, I was going to question whether there was any connection between stress and some of these symptoms. I have a highly stressful job. I've never had any injury or trauma (other then a bad back that wasn't caused by anything specific). I do wonder if there is any connection with stress and my problems.

My docs tested for an auto-immune disease as well as a zillion tick related diseases (I'm in CT and we are known for those nasty critters that serve no purpose). Everything in my blood work is normal and pretty much everything about my medical past has been normal.

You are absolutely right about asking for help, it just isn't easy for me. I am getting better but definately have lots of room to improve!! I am sure it isn't so much pity, but I hate not being "me".

I was out with my dog over the weekend. He was running around playing with his ball and I was doing nothing more then standing there laughing at him and I lost my balance and fell with all my weight on the palm of my hand. So now I can't even just stand in my yard let alone do gardening. Very frustrating. I want to go back to being me. My neuro told me that I would never be the same person that I was a few months ago. Pretty depressing!

Its nice to find people out there that get it and understand how dibilitating these diseases are. Its impossible to explain what the oscillopsia is like. I feel so silly and embarassed while walking in public when I'm not with someone that I can hold on to (like my husband) as I weave around like I'm a drunk. I know I shouldn't, but I do. You have a great positive attitude, I need to steal your vibes!!

 
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