Dizziness and Ringing/Roaring sound

[Guest guest]

Hello all,

A little background on my journey with C-toma: First surgery in 1970, at age

9, was a modified radical mastoidectomy to remove a lage c-toma from my right

ear. I have had 3 attempted reconstructions on the right ear, but all have

failed. In 1989, I had a CWD on the right ear, which has ( so far !) kept any

recurrence at bay !

In 2001, C-toma was discovered in my left ear so my doctor and I opted for a CWD

for the first surgery. The C-toma was extensive and had destroyed all the

hearing bones.

This left me with very little hearing in either ear. I muddled by with the

strongest behind the ear hearing aids available. In 2003, I had surgery for a

BAHA ( Bone anchored hearing aid ) for my right ear. It was/is wonderful ! In

2004, I had the same procedure for the left. The BAHA's have been such a

blessing to me!

What I have going on now is this: A couple of weeks ago, I started have

dizziness ( veritgo ) with the room spinning around me and the feeling that I

was going to fall. I also am experiencing loud ringing and roaring in both

ears. It overcomes people's voices and other noises around me. I am having

alot of difficulty at work. I can't hear my co-workers or bosses. The vertigo

isn't happening every day but the ringing/roaring in the ears ( in my head ! )

has been constant. It is very stressful and I feel worn out by the end of the

day from the strain to communicate and hear people around me.

Has anyone experienced anything like this? Any suggestions? I went to my

Doctor when symptoms first appeared and the C-toma has not returned in either

ear .... for which I am grateful!

Any thoughts or suggestions will be welcomed!

ilona

[Guest guest]

Perhaps an audiology appt. would be best to figure out why your hearing has gotten so bad? I have had 8 c-toma surgeries (4 in each ear) but the last one was 15 years ago. Personally, I will get vertigo on occasion and I think it is just

the way it is since I’ve had so many surgeries and it’s normal that it will affect my balance. I suffer from seasonal allergies and sometimes I think a little fluid in my ears will make me dizzy for that day. I don’t have as much experience however with the

roaring sound tho. It certainly sounds annoying. For more info. feel free to read my cholesteatoma blog at http://lisaceardisease.blogspot.com/2009/06/welcome-to-my-blog.html

Good luck to you!!!

IDQ Companies

[Guest guest]

>

> Hello all,

>

> A little background on my journey with C-toma: First surgery in 1970, at age

9, was a modified radical mastoidectomy to remove a lage c-toma from my right

ear. I have had 3 attempted reconstructions on the right ear, but all have

failed. In 1989, I had a CWD on the right ear, which has ( so far !) kept any

recurrence at bay !

> In 2001, C-toma was discovered in my left ear so my doctor and I opted for a

CWD for the first surgery. The C-toma was extensive and had destroyed all the

hearing bones.

>

> This left me with very little hearing in either ear. I muddled by with the

strongest behind the ear hearing aids available. In 2003, I had surgery for a

BAHA ( Bone anchored hearing aid ) for my right ear. It was/is wonderful ! In

2004, I had the same procedure for the left. The BAHA's have been such a

blessing to me!

>

> What I have going on now is this: A couple of weeks ago, I started have

dizziness ( veritgo ) with the room spinning around me and the feeling that I

was going to fall. I also am experiencing loud ringing and roaring in both

ears. It overcomes people's voices and other noises around me. I am having

alot of difficulty at work. I can't hear my co-workers or bosses. The vertigo

isn't happening every day but the ringing/roaring in the ears ( in my head ! )

has been constant. It is very stressful and I feel worn out by the end of the

day from the strain to communicate and hear people around me.

>

> Has anyone experienced anything like this? Any suggestions? I went to my

Doctor when symptoms first appeared and the C-toma has not returned in either

ear .... for which I am grateful!

>

> Any thoughts or suggestions will be welcomed!

>

> ilona

>

Yes, I have some experience with both dizziness and tinnitus (ringing/roaring).

I have even been to a seminar about tinnitus to learn how to manage it. In most

cases people with tinnitus also have reduced hearing. But the research on this

subject is pretty young and there are a lot of different opinions regarding what

is causing it and treatment. But when you have both tinnitus and vertigo there

also is the possibility of the Meniere´s disease. Having middel-ear disease is

listed as one possible cause of all these conditions, together with head trauma

and surgery. A lot of people with tinnitus have acquired it after loud sounds. I

asked the ENT on the tinnitus- seminar if the loud sound from the " drilling "

inside the ear in the surgery could cause such a sound traume. She had never

thought about it, but said that it might be.

I realize that I have had both dizziness and tinnitus all my life, but it has

not been all the time and not been bothering me to much until for the last 8

years (I am 38 now). I believe that a lot of conditions get worse as you get

older, but especially hearing and balance. And side-effects of surgeries and

diseases can come several years later. For me it has been hard to both

understand and accept this fact. I have been to different doctors trying to get

help to get rid of my issues. For the last one and a half year I have been on

and off work because I can´t manage my job as a teacher with one-sided

deafness, tinnitus and dizziness. It seems like the stress my work together with

taking care of kids/family makes the problems worse. And for the last 6 months I

have not been working at all. I did have a surgery 4 months ago to try restore

my hearing in my right ear with titan implant, but it has not had any effect.

The surgeon is suggesting a new surgery, but I don´t know if I will go through

another. Right now I want to try getting in better shape so that I can manage

being a mother of my 7 and 8 year old kids and I am getting some guidance on

finding a different carer.

If you only have had your problems for a few weeks it could be better again

soon. But for me it started with first two weeks on, then some weeks I was fine,

then it came back. And it kept on going on and off like this before it did not

go away. So my advice is taking action as soon as possible, cause then you might

be able to prevent it from getting worse. Like reducing your stress and do some

easy exercise. I have been trying to go on with full time job too long and ended

up with a total burnout. And it is very hard to manage to get yourself back on

track when it gets this bad.

The best of luck!

[Guest guest]

Hi,

My husband went through this exact same thing for over one year. He saw many doctors and visited the ER. Finally, he happened to be at the ENT's office and as the ENT was doing something down in his ear, the vertigo happened. He was sent for another CT which didn't show anything. The doctor decided to do surgery to "take a look" and found a fistula. He repaired the fistula and my husband is so much better. He still has mild vertigo but nothing like what he had before. (it was awful) If you want to know more, I'll email you later but I have to go to work.

Best wishes,

Christy

From: Wenche <wenche.rolandsen@...>cholesteatoma Sent: Wed, June 22, 2011 3:17:50 AMSubject: Re: Dizziness and Ringing/Roaring sound

>> Hello all,> > A little background on my journey with C-toma: First surgery in 1970, at age 9, was a modified radical mastoidectomy to remove a lage c-toma from my right ear. I have had 3 attempted reconstructions on the right ear, but all have failed. In 1989, I had a CWD on the right ear, which has ( so far !) kept any recurrence at bay !> In 2001, C-toma was discovered in my left ear so my doctor and I opted for a CWD for the first surgery. The C-toma was extensive and had destroyed all the hearing bones.> > This left me with very little hearing in either ear. I muddled by with the strongest behind the ear hearing aids available. In 2003, I had surgery for a BAHA ( Bone anchored

hearing aid ) for my right ear. It was/is wonderful ! In 2004, I had the same procedure for the left. The BAHA's have been such a blessing to me! > > What I have going on now is this: A couple of weeks ago, I started have dizziness ( veritgo ) with the room spinning around me and the feeling that I was going to fall. I also am experiencing loud ringing and roaring in both ears. It overcomes people's voices and other noises around me. I am having alot of difficulty at work. I can't hear my co-workers or bosses. The vertigo isn't happening every day but the ringing/roaring in the ears ( in my head ! ) has been constant. It is very stressful and I feel worn out by the end of the day from the strain to communicate and hear people around me.> > Has anyone experienced anything like this? Any suggestions? I went to my Doctor when symptoms first appeared and the C-toma has not returned in either ear .... for which I am

grateful!> > Any thoughts or suggestions will be welcomed!> > ilona>Yes, I have some experience with both dizziness and tinnitus (ringing/roaring). I have even been to a seminar about tinnitus to learn how to manage it. In most cases people with tinnitus also have reduced hearing. But the research on this subject is pretty young and there are a lot of different opinions regarding what is causing it and treatment. But when you have both tinnitus and vertigo there also is the possibility of the Meniere´s disease. Having middel-ear disease is listed as one possible cause of all these conditions, together with head trauma and surgery. A lot of people with tinnitus have acquired it after loud sounds. I asked the ENT on the tinnitus- seminar if the loud sound from the "drilling" inside the ear in the surgery could cause such a sound traume. She had never thought about it, but said that it might be. I

realize that I have had both dizziness and tinnitus all my life, but it has not been all the time and not been bothering me to much until for the last 8 years (I am 38 now). I believe that a lot of conditions get worse as you get older, but especially hearing and balance. And side-effects of surgeries and diseases can come several years later. For me it has been hard to both understand and accept this fact. I have been to different doctors trying to get help to get rid of my issues. For the last one and a half year I have been on and off work because I can´t manage my job as a teacher with one-sided deafness, tinnitus and dizziness. It seems like the stress my work together with taking care of kids/family makes the problems worse. And for the last 6 months I have not been working at all. I did have a surgery 4 months ago to try restore my hearing in my right ear with titan implant, but it has not had any effect. The surgeon is suggesting a new

surgery, but I don´t know if I will go through another. Right now I want to try getting in better shape so that I can manage being a mother of my 7 and 8 year old kids and I am getting some guidance on finding a different carer. If you only have had your problems for a few weeks it could be better again soon. But for me it started with first two weeks on, then some weeks I was fine, then it came back. And it kept on going on and off like this before it did not go away. So my advice is taking action as soon as possible, cause then you might be able to prevent it from getting worse. Like reducing your stress and do some easy exercise. I have been trying to go on with full time job too long and ended up with a total burnout. And it is very hard to manage to get yourself back on track when it gets this bad.The best of luck!

[Guest guest]

First I want to wish you good luck. I have 3 surgeries on my right ear, the

first surgery has left me with constant ringing in the ear as well as vertigo.

My last surgery in sept was performed, all my balance bones were removed,

another small growth was removed and the ear canal closed off. We had hoped

this would stop the ringing, but to no avail. I am driven nuts by this, I could

handle the deafness in the ear as well as occasional vertigo but the noise is

too much. My surgeon at U of M explained to me it is a brain issue, it is

trying to make up for the lack of hearing. Currently ther is no cure for this

my original ENT is treating me with Xanax 0.5mg every 8 hrs. This is from a

study from a Dr Siedman out of Henry Ford Hospital. The unfortunate side effect

is the fatigue. I worry about addiction also. As of now it has not done

anything for the tinnitus. I am trying to get my ENT to try the neurontin/

klonipin study also performed by Dr Siedman. Neurontin is a drug that works on

the nerves, I feel it's worth a try because it is a brain/ nerve problem. Wish

I could be more positive for you, I have been suffering for 3 years. I feel as

though I'm living day to day, sometimes it's enough to drive me insane. Good

luck

>

> Hello all,

>

> A little background on my journey with C-toma: First surgery in 1970, at age

9, was a modified radical mastoidectomy to remove a lage c-toma from my right

ear. I have had 3 attempted reconstructions on the right ear, but all have

failed. In 1989, I had a CWD on the right ear, which has ( so far !) kept any

recurrence at bay !

> In 2001, C-toma was discovered in my left ear so my doctor and I opted for a

CWD for the first surgery. The C-toma was extensive and had destroyed all the

hearing bones.

>

> This left me with very little hearing in either ear. I muddled by with the

strongest behind the ear hearing aids available. In 2003, I had surgery for a

BAHA ( Bone anchored hearing aid ) for my right ear. It was/is wonderful ! In

2004, I had the same procedure for the left. The BAHA's have been such a

blessing to me!

>

> What I have going on now is this: A couple of weeks ago, I started have

dizziness ( veritgo ) with the room spinning around me and the feeling that I

was going to fall. I also am experiencing loud ringing and roaring in both

ears. It overcomes people's voices and other noises around me. I am having

alot of difficulty at work. I can't hear my co-workers or bosses. The vertigo

isn't happening every day but the ringing/roaring in the ears ( in my head ! )

has been constant. It is very stressful and I feel worn out by the end of the

day from the strain to communicate and hear people around me.

>

> Has anyone experienced anything like this? Any suggestions? I went to my

Doctor when symptoms first appeared and the C-toma has not returned in either

ear .... for which I am grateful!

>

> Any thoughts or suggestions will be welcomed!

>

> ilona

>

[Guest guest]

Christy,Thanks for the information on what your husband has gone through. I will mention fistula to my doctor when I go back. I don't have health insurance so my options are limited. I am at home again today, missing another day of work due to the dizziness. The ringing and roaring never totally go away either. I haven't worked a full week of work for about a month now. Feel free to email me directly if you have more information you would like to share.Thanks again for taking the time to reply.IlonaFrom: Christy Dozier

<savemoredo@...>Subject: Re: Re: Dizziness and Ringing/Roaring soundcholesteatoma Date: Wednesday, June 22, 2011, 7:41 AM

Hi,

My husband went through this exact same thing for over one year. He saw many doctors and visited the ER. Finally, he happened to be at the ENT's office and as the ENT was doing something down in his ear, the vertigo happened. He was sent for another CT which didn't show anything. The doctor decided to do surgery to "take a look" and found a fistula. He repaired the fistula and my husband is so much better. He still has mild vertigo but nothing like what he had before. (it was awful) If you want to know more, I'll email you later but I have to go to work.

Best wishes,

Christy

From: Wenche <wenche.rolandsen@...>cholesteatoma Sent: Wed, June 22, 2011 3:17:50 AMSubject: Re: Dizziness and Ringing/Roaring sound

>> Hello all,> > A little background on my journey with C-toma: First surgery in 1970, at age 9, was a modified radical mastoidectomy to remove a lage c-toma from my right ear. I have had 3 attempted reconstructions on the right ear, but all have failed. In 1989, I had a CWD on the right ear, which has ( so far !) kept any recurrence at bay !> In 2001, C-toma was discovered in my left ear so my doctor and I opted for a CWD for the first surgery. The C-toma was extensive and had destroyed all the hearing bones.> > This left me with very little hearing in either ear. I muddled by with the strongest behind the ear hearing aids available. In 2003, I had surgery for a BAHA ( Bone

anchored

hearing aid ) for my right ear. It was/is wonderful ! In 2004, I had the same procedure for the left. The BAHA's have been such a blessing to me! > > What I have going on now is this: A couple of weeks ago, I started have dizziness ( veritgo ) with the room spinning around me and the feeling that I was going to fall. I also am experiencing loud ringing and roaring in both ears. It overcomes people's voices and other noises around me. I am having alot of difficulty at work. I can't hear my co-workers or bosses. The vertigo isn't happening every day but the ringing/roaring in the ears ( in my head ! ) has been constant. It is very stressful and I feel worn out by the end of the day from the strain to communicate and hear people around me.> > Has anyone experienced anything like this? Any suggestions? I went to my Doctor when symptoms first appeared and the C-toma has not returned in either ear .... for which I am

grateful!> > Any thoughts or suggestions will be welcomed!> > ilona>Yes, I have some experience with both dizziness and tinnitus (ringing/roaring). I have even been to a seminar about tinnitus to learn how to manage it. In most cases people with tinnitus also have reduced hearing. But the research on this subject is pretty young and there are a lot of different opinions regarding what is causing it and treatment. But when you have both tinnitus and vertigo there also is the possibility of the Meniere´s disease. Having middel-ear disease is listed as one possible cause of all these conditions, together with head trauma and surgery. A lot of people with tinnitus have acquired it after loud sounds. I asked the ENT on the tinnitus- seminar if the loud sound from the "drilling" inside the ear in the surgery could cause such a sound traume. She had never thought about it, but said that it might be. I

realize that I have had both dizziness and tinnitus all my life, but it has not been all the time and not been bothering me to much until for the last 8 years (I am 38 now). I believe that a lot of conditions get worse as you get older, but especially hearing and balance. And side-effects of surgeries and diseases can come several years later. For me it has been hard to both understand and accept this fact. I have been to different doctors trying to get help to get rid of my issues. For the last one and a half year I have been on and off work because I can´t manage my job as a teacher with one-sided deafness, tinnitus and dizziness. It seems like the stress my work together with taking care of kids/family makes the problems worse. And for the last 6 months I have not been working at all. I did have a surgery 4 months ago to try restore my hearing in my right ear with titan implant, but it has not had any effect. The surgeon is suggesting a new

surgery, but I don´t know if I will go through another. Right now I want to try getting in better shape so that I can manage being a mother of my 7 and 8 year old kids and I am getting some guidance on finding a different carer. If you only have had your problems for a few weeks it could be better again soon. But for me it started with first two weeks on, then some weeks I was fine, then it came back. And it kept on going on and off like this before it did not go away. So my advice is taking action as soon as possible, cause then you might be able to prevent it from getting worse. Like reducing your stress and do some easy exercise. I have been trying to go on with full time job too long and ended up with a total burnout. And it is very hard to manage to get yourself back on track when it gets this bad.The best of luck!

[Guest guest]

Hello,Thanks for replying to my email. I appreciate your information on the seminar.I am at home again today because the dizziness is back and the ringing/roaring in the ears is constant. I feel so stressed and exhausted. I haven't worked a full week for about a month now. I don't have health insurance so I am trying to keep the dr visits to a minimum.It is comforting to know of others that are dealing with or have dealt with the same issues. I am having a difficult time coping with the fact that these issues have come up several years after my last surgery. I was learning to cope with the deafness and now all these issues are haunting me everyday. It is so difficult to explain to family, friends and co-workers/bosses. I feel stressed out all the time

and I know that isn't good for me either.Thanks again for taking the time to reply and share your experience.ilonaFrom: Wenche <wenche.rolandsen@...>Subject: Re: Dizziness and Ringing/Roaring soundcholesteatoma Date: Wednesday, June 22, 2011, 3:17 AM

Yes, I have some experience with both dizziness and tinnitus (ringing/roaring). I have even been to a seminar about tinnitus to learn how to manage it. In most cases people with tinnitus also have reduced hearing. But the research on this subject is pretty young and there are a lot of different opinions regarding what is causing it and treatment. But when you have both tinnitus and vertigo there also is the possibility of the Meniere´s disease. Having middel-ear disease is listed as one possible cause of all these conditions, together with head trauma and surgery. A lot of people with tinnitus have acquired it after loud sounds. I asked the ENT on the tinnitus- seminar if the loud sound from the "drilling" inside the ear in the surgery could cause such a sound traume. She had never thought about it, but said that it might be.

I realize that I have had both dizziness and tinnitus all my life, but it has not been all the time and not been bothering me to much until for the last 8 years (I am 38 now). I believe that a lot of conditions get worse as you get older, but especially hearing and balance. And side-effects of surgeries and diseases can come several years later. For me it has been hard to both understand and accept this fact. I have been to different doctors trying to get help to get rid of my issues. For the last one and a half year I have been on and off work because I can´t manage my job as a teacher with one-sided deafness, tinnitus and dizziness. It seems like the stress my work together with taking care of kids/family makes the problems worse. And for the last 6 months I have not been working at all. I did have a surgery 4 months ago to try restore my hearing in my right ear with titan implant, but it has not had any effect. The surgeon is suggesting a new

surgery, but I don´t know if I will go through another. Right now I want to try getting in better shape so that I can manage being a mother of my 7 and 8 year old kids and I am getting some guidance on finding a different carer.

If you only have had your problems for a few weeks it could be better again soon. But for me it started with first two weeks on, then some weeks I was fine, then it came back. And it kept on going on and off like this before it did not go away. So my advice is taking action as soon as possible, cause then you might be able to prevent it from getting worse. Like reducing your stress and do some easy exercise. I have been trying to go on with full time job too long and ended up with a total burnout. And it is very hard to manage to get yourself back on track when it gets this bad.

The best of luck!