Does hearing ever recover?

[drz]

I lost all hearing in right ear from WG when first admitted to hospital for treatment. I only had about 15% of my hearing in left year before due to many infections and operations. I can hear a little bit in left ear with strong hearing aid but hearing is starting fade in that ear too. I can get a cochlear implant in left side once WG is under control and I get off Cytoxan meds but that is many months away.

Has anyone ever recovered hearing lost because of WG?

[pberggren1]

I lost complete hearing in my left ear and about 50% in my right ear. My left ear didn't go completely dead for about year and a bit after onset. My hearing has stayed the same for about 6 years now.

[Jack]

My hearing loss is due to eustation tube blockage and has remained constant for many years. I can improve it with large doses of Pred, but that is not really an option.

[DEE]

I has also lost hearing in my left ear and just last couple of weeks started to wear an hearing aid which they are now going to keep a regular test of
went to hear a live band the second night after i got it that was interresting :) DEEx

[katarzena]

I've read somewhere on the forums that a person lost hearing in one ear and it recovdered when he/she started the treatment!

[elephant]

If caught in time (hardly no damage) yes with medication it can recover. It also depends how WG attacks the ear ( parts of the inner/ mastoid). I was almost completely deaf in my left ear and half on the right. Once I started high dose of prednisone and cellcept it improved. I have hearing in both but in the low range of normal.

[jola57]

Exactly as elephant said. I lost 75 in left and 30 in right. I am bck to almost normal in right, but left is still gone. No improvement for over a year on meds.

[Barbara1966]

Same story, I lost 90% in right ear and 40% in left, after one year from being diagnosed and 4 months in remission I dint recover any hearing beck. Even I was diagnosed pretty quick from the moment of the first symptom and that was ear pain it was two months. For last 7 months I have hearing aids and I love it.
Stay positive maybe you will have better luck.

[drz]

I am back at U Medical Center for more aggressive tretment and they started me out with 125 mg of Solumedro every 6 hours and may add plasmapherisis tomorrow and continue this for three days and then re-evaluate. I got pretty goofy at 1000 mg a day s upon my first admission but it did eventually stop the bleeding in my lungs. I am hoping the more aggressive treatment can preserve the little hearing I have left (about 10% in one ear) as this allows me to still communicate in person if person speaks clearly and closely to my ear that still has some hearing and when my hearing is cranked up to max and working well.

[jola57]

Good luck with the treatment drz, I hope it works

[drz]

My hearing loss is due to eustation tube blockage and has remained constant for many years. I can improve it with large doses of Pred, but that is not really an option.

Is this related or due to Wegener's? i came in to U medical Center to get RX for probable Wegener flare up and one of symptoms that caused concern was increased hearing loss in my only ear with some hearing. I also was having sensitivity in throat and some trouble swallowing. Lengthy evaluation by ENT department concluded neither problem appeared related to any Wegener flareup but hearing seemed to improve in my remaining hearing ear after large dosage (500 mg) of Solumedrol for a day. But since hearing fluctuated during day and seemed related to feeling openess and blockage of Eustachian tube they figured it was not related to Wegener's. I wonder though if my hearing will deteriorate again when Solumedrol wears off.

[Jack]

I'm sure it is related to Wegs. There are so many on the forum with similar troubles and it also seems to affect the tear ducts, sinuses and throat. Basically, all the plumbing in your head and face. Everyone seems to be prone to tinitus too.

I have found that it is not at all unusual for the docs to deny that the varies random symptoms we display are not related to Wegs. However, I think that much of this is due to them being undocumented. Various conditions described on these pages do not appear in the descriptions of Wegs symptoms, but are common enough to suggest a positive link.

[JanW]

My ENT says every Weggie should have a baseline hearing test and hearing test yearly. I show some minor congestion in one ear that he thinks is related to the disease, but my hearing is still normal for a person of my age.

[elephant]

I agree with Jack. I still have sinus issues and I am in remission induced by staying on medicines. It is important to get hearing tests every year and eye's checked every 6 months if your having eye symptoms or problems.

[drz]

I'm sure it is related to Wegs. There are so many on the forum with similar troubles and it also seems to affect the tear ducts, sinuses and throat. Basically, all the plumbing in your head and face. Everyone seems to be prone to tinitus too.

I have found that it is not at all unusual for the docs to deny that the varies random symptoms we display are not related to Wegs. However, I think that much of this is due to them being undocumented. Various conditions described on these pages do not appear in the descriptions of Wegs symptoms, but are common enough to suggest a positive link.

Does the tinnitus get better? The ENT doctors told me it was most likely the nerves dying after the WG destroyed the air cells that conducted the sound. The doctors have said such hearing loss will seldom recover. One doctor described it like breaking a glass and saying it can't be put back together again. The tinnitus varies from loud humming or sounds like air rushing and sometimes it gets so loud it wakes me up and some times it seems to disappear or fade away.

[pberggren1]

I'm sorry to say that I have had the tinnitus since the begining and has not got better over time. I have had Wegs for over 7 years now.

[talentx7]

Is loss of hearing and or ear problems common in Wg? Are there symptoms before bad damage occurs? I don't think anyones ever looked in Carters ears, or done hearing tests or anything?

[pberggren1]

I don't know the numbers but I think hearing loss of some type is fairly common in Wegs.

From what I understand there are 2 types of hearing loss, conductive and sensorineural.

Conductive hearing loss is loss though wax in ear canals, fluid in middle ear, damage to middle ear bones, ect.

Sensorineural hearing loss is damage to the auditory nerve itself and is non reversable.

My hearing loss in both ears is sensorineural.

As soon as you notice any kind of hearing loss it is always best to go to a ENT right away and don't accecpt no for an answer.

[Jack]

As above, I think it is very common. I've had tinnitus for many years and although it varies in intensity, it never goes away.

[elephant]

My ears ring all the time. Some days louder than other days.

[Carly Hedge]

My left ear was affected by the condition. It's gotten better with the meds but not completely. I have a hard time if someone is on my left side to hear them clearly. Then my right also has some issues. I get more pressure in my left inner ear depending on the weather. Ha! ha! My hub really gets annoyed but he is understanding. :) But if I am trying to hear someone and there is ALOT of background noise like a eatery or an office- I have a hard time hearing the person even if I use 110 % concentration but sometimes when I even do that- I can't.
My Rheuma tells me it can with meds but not guaranteed. I do have scar tissue on my inner ear.

[pwc51]

It is possible someone alluded to my recovery earlier. Besides all my other Wg symptoms I had severe ear pain (particularly left ear) and over about 4 weeks or so went quite deaf. I could only watch TV with subtitles. When people came to my office I could not hold a conversation with them unless they came quite close (in some cases too close for comfort!).

My diagnosis shortly afterwards resulted in my immediate hospitalisation and commencement of significant pred doses. I would say my hearing returned to almost normal levels within 24 hours of starting treatment - a real eureka moment! Shortly after returning home one of my daughters commented that she thought my hearing was better than before as I was hearing things I shouldn't!

Today, almost a year later, it remains good although there is a lingering ear / sinus problem in the left ear which affects me periodically for short (5 minute) periods occasionally. I mention this to my consultant on my periodic visits but, in the scheme of things, it is so minor I consider it best left alone rather than add to medication or attempting other, more radical, solutions.

I should add I think I am lucky and am leading a near 'normal' life now. Although on mtx and pred, plus a host of other medication, I work full time and travel abroad (apart from where I need injections) (US - Houston next week). I lack some of the physical energy for the sports I did before although have just been on a cycling holiday (very short distances) on a remote Scottish Island. Long may this condition prevail.

[drz]

When I was in hospital they gave me a "pocket talker" to use to communicate with staff. I want to buy something like that to use to communicate with others. Iit seemed to work better than hearing aid because of the portable mic and appeared more powerful.

What such aids have others found useful or recommended to help cope with hearing loss?

[Natalie]

well I n my case My hearing comes and gos and I see it as a bit of a sign of a flare .
My hearing was shocking for years but did come back to an exceptable level . Left ear is about 40% and right is about 80% so makes up for the left but they ring contentlly . I have lost hearing about 3 times over the 13 yrs I have had wegs then all of a sudden Bam ! can hear again .
I think It has alot to do with what part of the ear has been affected thou . nat

[drz]

It

I should add I think I am lucky and am leading a near 'normal' life now. Although on mtx and pred, plus a host of other medication, I work full time and travel abroad (apart from where I need injections) (US - Houston next week). I lack some of the physical energy for the sports I did before although have just been on a cycling holiday (very short distances) on a remote Scottish Island. Long may this condition prevail.

This is very encouraging that you can lead a near normal life. I dream about being able to resume some such activities again some time in the future. I used to really enjoy traveling but wonder if I will ever feel comfortable going to any place not near good medical care.

[drz]

I don't know the numbers but I think hearing loss of some type is fairly common in Wegs.

From what I understand there are 2 types of hearing loss, conductive and sensorineural.

Conductive hearing loss is loss though wax in ear canals, fluid in middle ear, damage to middle ear bones, ect.

Sensorineural hearing loss is damage to the auditory nerve itself and is non reversable.

My hearing loss in both ears is sensorineural.

As soon as you notice any kind of hearing loss it is always best to go to a ENT right away and don't accecpt no for an answer.

How do they determine the difference? Is the tinnitus related to sensorineural type of loss?

[pberggren1]

They could tell the difference by doing a Complete Audiometric Workup. Tinnitus is with both types and even comes with no hearing loss.

[beeinformed]

They could tell the difference by doing a Complete Audiometric Workup. Tinnitus is with both types and even comes with no hearing loss.

Hi!

I have mild hearing loss in both ears and tinnitus . The doctor wants me to do the auditory brainstem response test to determine the cause of my tinnitus.

Will this test determine the cause of my tinnitus and is there any other test I can take to determine the cause of my tinnitus? Thanks. :)

[Jack]

I think half the people on the forum have Tinnitus. It seems to be a common Wegener's thing. I'm afraid that I've not heard of anyone being cured, but I'd love to know if anyone has.

[drz]

Mine fluctuates a lot. Sometimes it is very loud and bothersome and other times rather low keyed and barely noticeable. I don't know if it ever really stops though.

[Doug]

Mine seems like flowing water, which I find pleasant except when I'm trying to hear others clearly. It fluctuates during the day.

[pberggren1]

Hi beinformed,

I'm not sure if I had an auditory brainstem response test done when I had the complete audiometric workup done. But it does sound familiar though. No one ever told me that the direct cause of tinnitus could be found. I wouldn't be too hopeful about the tinnitus going away. Though in some cases it does but it is very rare.

[pberggren1]

Doug, You actually find the tinnitus pleasant while trying to hear another person speak?

I find tinnitus absolutely crazy most of the time. Sometimes it keeps me up at night.

[pberggren1]

I also forgot to mention that my new ENT has his own website that is quite good.

It is: www.drmiaent.com (http://www.drmiaent.com)

I strongly suggest taking a peak.

[Doug]

Doug, You actually find the tinnitus pleasant while trying to hear another person speak?

I find tinnitus absolutely crazy most of the time. Sometimes it keeps me up at night.

Under that circumstance, it is frustrating, because it may as well be deaf for all the "I'm sorry, what did you says?" a conversation might have. Because it fluctuates in volume during the day, I often am unaware of it until I consciously think about it. I know some people (William Shattner, Captain Kirk on "Star Trek") has it from being too close to a loud explosion while filming the show. He actually became suicidal because it was so overwhelmingly present in his life. We seem to be at two ends of the tolerance range for people with the condition.

[Sangye]

When the vertigo began 2 weeks ago, it caused simultaneous really loud tinnitus-- like a loud horn. Then it morphed into something different-- sounded exactly like I was on the side of a racetrack and a race car was doing laps. Now it's just a high-pitched noise that I can tune out. It'd be nice if it didn't become a permanent fixture, though.

[drz]

I also forgot to mention that my new ENT has his own website that is quite good.

It is: www.drmiaent.com (http://www.drmiaent.com)

I strongly suggest taking a peak.

I found this on that web site. It sure sounds similar to Wegener's disease, doesn't it?





Ears (http://www.drmiaent.com/library/4008/Ears.html)
Throat (http://www.drmiaent.com/library/4009/Throat.html)
Nose and Mouth (http://www.drmiaent.com/library/4010/NoseandMouth.html)
Head and Neck (http://www.drmiaent.com/library/4011/HeadandNeck.html)
Cancer (http://www.drmiaent.com/library/4012/Cancer.html)
Pediatric (http://www.drmiaent.com/library/4013/Pediatric.html)
Información de salud en Español (http://www.drmiaent.com/library/4014/Informaci%C3%B3ndesaludenEspa%C3%B1ol.html)




http://www.drmiaent.com/images/60x60.png (http://www.drmiaent.com/blog.html)http://www.drmiaent.com/images/twitter.png (http://twitter.com/DrShabirMia)
http://www.drmiaent.com/images/facebook.png (http://www.facebook.com/pages/Saskatoon-SK/Dr-Shabir-Mia-MD-FRCSC/302956097563?v=wall)http://www.drmiaent.com/images/myspace.png (http://www.myspace.com/drmiaent)



Our team of specialists and staff believe that informed patients are better equipped to make decisions regarding their health and well being. For your personal use, we have created an extensive patient library covering an array of educational topics. Browse through these diagnoses and treatments to learn more about topics of interest to you. Or, for a more comprehensive search of our entire Web site, enter your term(s) in the search bar provided.

As always, you can contact (http://www.drmiaent.com/contact.html) our office to answer any questions or concerns.



#slot-main {display:none;} What is AIED?

Autoimmune inner ear disease (AIED) is an inflammatory condition of the inner ear. It occurs when the body's immune system attacks cells in the inner ear that are mistaken for a virus or bacteria. AIED is a rare disease occurring in less than one percent of the 28 million Americans with a hearing loss.
How Does the Healthy Ear Work?

The ear has three main parts: the outer, middle and inner ear. The outer ear (the part you can see) opens into the ear canal. The eardrum separates the ear canal from the middle ear. Small bones in the middle ear help transfer sound to the inner ear. The inner ear contains the auditory (hearing) nerve, which leads to the brain.
Any source of sound sends vibrations or sound waves into the air. These funnel through the ear opening, down the ear, canal, and strike your eardrum, causing it to vibrate. The vibrations are passed to the small bones of the middle ear, which transmit them to the hearing nerve in the inner ear. Here, the vibrations become nerve impulses and go directly to the brain, which interprets the impulses as sound (music, voice, a car horn, etc.).
Symptoms Of AIED

The symptoms of AIED are sudden hearing loss in one ear progressing rapidly to the second ear. The hearing loss can progress over weeks or months. Patients may feel fullness in the ear and experience vertigo. In addition, a ringing, hissing, or roaring sound in the ear may be experienced. Diagnosis of AIED is difficult and is often mistaken for otitis media until the patient develops a loss in the second ear. One diagnostic test that is promising is the Western blot immunoassay.
Treatment For AIED?

Most patients with AIED respond to the initial treatment of steroids, prednisone, and methotrexate, a chemotherapy agent. Some patients may benefit from the use of hearing aids. If patients are unresponsive to drug therapy and hearing loss persists, a cochlear implant maybe considered.
History Of AIED

Until recently it was thought that the inner ear could not be attacked by the immune system. Studies have shown that the perisacular tissue surrounding the endolymphatic sac contains the necessary components for an immunological reaction. The inner ear is also capable of producing an autoimmune response to sensitized cells that can enter the cochlea through the circulatory system.
AIED Research

A multi-institutional clinical study, Otolaryngology Clinical Trial Cooperative Group (OCTCG) co-sponsored by the NIH and the American Academy of Otolaryngology-Head and Neck Surgery Foundation, is being conducted to measure the benefits and risks of treating AIED with two different immunosuppressive drugs: prednisone and methotrexate, a chemotherapy drug.

[Sangye]

Very interesting, drz. Thanks for posting.

[Doug]

drz - Super! It all sounds (no levity intended) too familiar.

[elephant]

GReat info!

[pberggren1]

Muchas Gracias.

[talentx7]

I was wondering if anyone with the ear problems has balance problems?? My son hasn't had any ear issues yet, but I have had balance problems and vertigo for years now and was wondering if anyone has ways to treat this.

[janNaz]

Hi talentx7. I lost hearing in both my ears earlier this year and have had severe vertigo several times prior to being diagnosed with WG. Since I was diagnosed and treatment began in March, hearing in my right ear has almost fully recovered, but my left ear, unfortunately, has not made any improvement so I am deaf in that ear. I also have not had vertigo since being diagnosed, but I do have an imbalance problem and tinnitus which are both continuous. My ENT doc explained that damage to my left ear is probably still in the process of healing, which may be causing the imbalance, and once healed, the ears will balance out and the imbalance should go away...?? I don't know about this explanation as the imbalance has not yet improved, and I'm growing more and more tired and frustrated with walking around like a drunken sailor and not being able to drive. I did mention the imbalance again to my Rheumy yesterday, and she said perhaps its not my ears that's causing the imbalance but a problem in the cerebellum. She's going to discuss this with my ENT and see about doing a CT scan or MRI and other tests. I hope to find out more from her very soon.

[talentx7]

Hi jan, I had several episodes of vertigo when I was pregnant with my 3rd child 11 years ago now. Started having imbalance immediately, sadlly, it hasn't gone away. Some days are better than others, but still bad. I feel like I am on a ship constantlly. Drs. think I had a bad infection that damaged nerves??? I have a hard time walking also. All I get from the docs is to take Meclazine. Don't like that med, makes me VERY tired. I was hoping someone had a miracle cure :)

[elephant]

Jan glad your getting a MRI, to check things out. Hope this vertigo goes away ASAP!

[JanW]

Boy, it's going to be tough on us with two Jans around. I'm thinking, WHAT? Why do I need an MRI, elephant ;-)?

[drz]

I was wondering if anyone with the ear problems has balance problems?? My son hasn't had any ear issues yet, but I have had balance problems and vertigo for years now and was wondering if anyone has ways to treat this.
I worked on this in my physical therapy. Some machines like a sophisticated Wii machine have many balance exercises i did many times and these seemed to help a lot. I notice that if I close my eyes my balance really got bad. I also have serious neuropathy from diabetes which has already created serious balance problems before WG Now with inner ear problems i think I will always walk like a drunken sailor. I doubt I will do any wade in stream fly fishing for awhile.since I would just fall in stream. I wonder if i can dance again.

[elephant]

If I was quick witted I would come up with something funny to say JanW....thanks for the laugh!

[pwc51]

Jack said:- I think half the people on the forum have Tinnitus. It seems to be a common Wegener's thing. I'm afraid that I've not heard of anyone being cured, but I'd love to know if anyone has.

I had Tinnitus during my deafness period but once my hearing returned it seemed to largely disappear (I really don't notice it now from day to day).

[elephant]

That is great to hear pwc51! Hopefully that will happen to me, my ears are ringing right now!

[pberggren1]

Well elephant go ahead and answer them!! Ha Ha!!

[Sangye]

I do have an imbalance problem and tinnitus which are both continuous. My ENT doc explained that damage to my left ear is probably still in the process of healing, which may be causing the imbalance, and once healed, the ears will balance out and the imbalance should go away...?? I don't know about this explanation as the imbalance has not yet improved, and I'm growing more and more tired and frustrated with walking around like a drunken sailor and not being able to drive. I did mention the imbalance again to my Rheumy yesterday, and she said perhaps its not my ears that's causing the imbalance but a problem in the cerebellum. She's going to discuss this with my ENT and see about doing a CT scan or MRI and other tests. I hope to find out more from her very soon.
Jan, you should see a chiropractor who does craniosacral work. Where are you in AZ? My old stomping grounds-- I got connections to amazing docs out there. :)

[janNaz]

Jan, you should see a chiropractor who does craniosacral work. Where are you in AZ? My old stomping grounds-- I got connections to amazing docs out there. :)

Sangye, I'm in Glendale. I would love any referrals, as I've been contemplating the idea of going to a chiropractor. I've also been receiving acupuncture treatments to help with the hearing loss, but so far nothing in my left ear. One doctor told me it probably wouldn't return, but I have to remain positive that one day it will.

[Sangye]

Oh, you lucky dog. You can go see my chiropractor there-- one of the best I've ever known.

Dr Mark Force
480-563-4256

He's in Scottsdale, a dear friend. I've known him for about 10 years-- long before I got Wegs. He knows how to work with Wegs. because he was with me through the pre-dx days (when we had no idea what it was) through all the treatments and complications of the first 2.5 years. He still helps me long-distance. You'd be in completely safe hands there. I miss him so much I can't think of him without crying. He once drove up to Flagstaff at 4 in the morning (with late night notice) to keep me alive-- literally. I hope you'll give him a call. You won't believe the difference it can make.

[pberggren1]

I was having some muscle stiffness in my back the last few days but has now gone away. I was wondering if it would be worth while to regularly see a chiropractor? I think there are 4 in town here.

[Sangye]

Nothing else corrects what chiropractic does. I would never be without a chiropractor. That was true long before I became one, too.

I also think people should receive acupuncture regularly, since nothing else corrects those imbalances, either. I just haven't been able to find one out here who can handle my case.

[pberggren1]

Thanks Sangye, I think I will make some calls tomorrow to see a chiropractor, acupuncturist, massage therapist, and naturopathic doctor.

[janNaz]

Oh, you lucky dog. You can go see my chiropractor there-- one of the best I've ever known.

Dr Mark Force
480-563-4256

He's in Scottsdale, a dear friend. I've known him for about 10 years-- long before I got Wegs. He knows how to work with Wegs. because he was with me through the pre-dx days (when we had no idea what it was) through all the treatments and complications of the first 2.5 years. He still helps me long-distance. You'd be in completely safe hands there. I miss him so much I can't think of him without crying. He once drove up to Flagstaff at 4 in the morning (with late night notice) to keep me alive-- literally. I hope you'll give him a call. You won't believe the difference it can make.

Thanks Sangye! I will definitely give him a call.

[flana]

I have always had to adjust the pressure... and the left ear was messed up when I was up in the air just prior to the diagnosis. It has been a year and a half, and I still hear the ringing (kinda like after when someone slaps you under the ear), and there is no sign of it resolving... Well that is the new normal for me. I hope it gets better for you drz...

[jsundberg]

I just woke up in the dead of night with tinnitus for the first time. What do you do for it, for having it for 7 yrs?

[Jack]

I'm afraid that most will answer that you learn to live with it. :sad:
Many of us seem to suffer and I am not aware of any cure.

[elephant]

My ears have been ringing for 30 years. Sometimes the ringing is really loud and sometimes I don't even notice it! Like Jack said, I don't think there is a cure for it.

[Sangye]

If the tinnitus just started, you need to call your ENT right away. They should do a hearing test to see if your hearing is affected. If so, you need to act quickly to preserve your hearing-- high dose steroids and steroid ear injections after that if hearing is not normal.

There is only a small window of opportunity to fix this. If you wait, the damage is permanent and the tinnitus and any hearing loss will remain.

[jola57]

Have you heard of this treatment being sucessful Sangye? I think that it is irreperable from the start. It may get better for some but for the most of us it will be just the way it is.

[Sangye]

It just worked for me! In July I developed sudden, severe vertigo and nearly 100% hearing loss in one ear. I was put on high dose steroids (40-60mg) for 2 weeks, then tapered off in 1 week. That greatly improved my hearing, but the higher frequencies were still gone. We did 2 steroid injections, which restored most of the higher frequencies and also improved my word recognition. The otologist felt the improvement was so great he didn't see the need for a 3rd injection.

The otologist, my Wegs ENT and Dr Seo all said there's a small window of opportunity to save the hearing, and you have to do everything you can or the damage will be permanent. They also said that if the inflammation is not addressed quickly, the hearing (and balance) can continue to worsen.

This is an example of why it's so important to be getting care at a major research hospital if possible. The otologist used evidence-based medicine to make his decisions and was also highly skilled in the injections procedure. He emphasized that you shouldn't allow just any ear doc to do it.

[jola57]

Luck is on your side than Sangye. I'm afraid that mine has passed and the damage is permanent. I did have high doses of steroids at the time that I partially lost my hearing, but the "plugged up" ears that I had before my diagnosis were deemed an infection and treated as such.

[Sangye]

Yeah, I was definitely very fortunate and it also went well because I took control of the situation. Because of some smaller ENT concerns last year, I started seeing the Wegs ENT at JHU. That was lucky, because I wouldn't have had the connection otherwise. When I wound up hospitalized locally with the vertigo, the docs completely ignored the hearing loss and wouldn't call any of my JHU docs. I called my ENT to ask for help myself. He explained the urgency to me and told them what to do-- high dose steroids immediately, etc.... I called him several times that week, even though he was in communication with the hospital doc. She wasn't really on the ball and made several mistakes. I didn't worry about stepping on toes and was only concerned about getting the best care.

I know you didn't have that choice Jolanta, since your damage happened in a sneakier way before you were dx'ed. I just wanted others to know that a lot of the time what looks like luck actually has a lot to do with one's actions. Even getting the ear injections was part luck and part action. Luck because my ENT got me to the JHU otologist for it, and action because it was extremely difficult to get there and greatly weakened me in other ways. Many people would've said it wasn't worth the effort and settled for the hearing loss.

[drz]

It just worked for me! In July I developed sudden, severe vertigo and nearly 100% hearing loss in one ear. I was put on high dose steroids (40-60mg) for 2 weeks, then tapered off in 1 week. That greatly improved my hearing, but the higher frequencies were still gone. We did 2 steroid injections, which restored most of the higher frequencies and also improved my word recognition. The otologist felt the improvement was so great he didn't see the need for a 3rd injection.

The otologist, my Wegs ENT and Dr Seo all said there's a small window of opportunity to save the hearing, and you have to do everything you can or the damage will be permanent. They also said that if the inflammation is not addressed quickly, the hearing (and balance) can continue to worsen.

This is an example of why it's so important to be getting care at a major research hospital if possible. The otologist used evidence-based medicine to make his decisions and was also highly skilled in the injections procedure. He emphasized that you shouldn't allow just any ear doc to do it.

You were lucky it worked for you. They tried this procedure for me to no avail. They told me it was a long shot at best but it does work for some people sometimes and the injection is relatively painless compared to many of other treatments for Wegener's. It sounds bad. My hearing did improve slightly over several weeks but all gains were lost during next flareup and haven't come back again so far but might since there is often variation in what I can hear in my ear that still has 10% hearing left.

[Sangye]

I'm sorry it didn't work for you, drz. I hope you get back more of your hearing. :sad:

They did it just in time for me. It wasn't at all painful, just kind of ooky. :blink:

[Natalie]

my hearing was bad for the first few years then got to a new normal .. It comes and gos .. when I was really deaf I hated it and really retreated away from the outside world .. friends and gatherings . was just to hard . then one day out of the blue pop hearing was back in one ear to almost perfect ! was like christmas :) they have done this at lease 3 times in 13 yrs .. my ears always ring but i dont notice it as much at i used to ... when my hear ing starts to decrease you can bet that Wegs is stiring , Its a early sign for me . .. i am hoping youre ears o improve again Drz
Nat --

[elephant]

Natalie, I can agree with you on that one...I still do a daily hearing ( psycho test)...making sure I can hear the fan and make sure the TV volume had not changed.

[Sangye]

That's really cool how your hearing comes back all of a sudden, Natalie.

[janNaz]

my hearing was bad for the first few years then got to a new normal .. It comes and gos .. when I was really deaf I hated it and really retreated away from the outside world .. frie.nds and gatherings . was just to hard . then one day out of the blue pop hearing was back in one ear to almost perfect ! was like christmas :) they have done this at lease 3 times in 13 yrs .. my ears always ring but i dont notice it as much at i used to ... when my hear ing starts to decrease you can bet that Wegs is stiring , Its a early sign for me . .. i am hoping youre ears o improve again Drz
Nat --

Hi Natalie. Reading your post gave me a little more hope...thank you! I too have hearing loss - left ear totally deaf & right ear regained almost 100%. It is hard, but I'm trying to remain hopeful that one day some hearing will be regained in the left ear as well.

[Hammy8241]

I'm afraid that most will answer that you learn to live with it. :sad:
Many of us seem to suffer and I am not aware of any cure.

Retuning the brain may cure tinnitus, finds study | Science | guardian.co.uk (http://www.guardian.co.uk/music/2011/jan/19/retuning-brain-may-cure-tinnitus?INTCMP=SRCH)

So thats why I have tinnitus! It was that teacher who kept twisting my ear when i was bad - de-tuned my brain!

[Sangye]

Actually Hammy, twisting the ear can damage your hearing. Chiropractors adjust the 3 ear bones by doing a particular gentle tug on the ear. (Do not try this yourself, anyone.) It works by pulling the soft tissue that holds the ear bones and eardrums. If someone did it forcefully and twisted, it very well could cause damage.

In regards to the article, I wonder if they'll use VNS (vagus nerve stimulators) which are used to control seizures in people with severe epilepsy. When they have a seizure, someone else swipes a magnetic wand over the implanted VNS and the seizure can stop immediately. I don't remember if I saw it on here or somewhere else, but they're putting VNS magnets on dog collars of people with epilepsy. The dog is trained to detect a seizure coming and they come close to the person to activate the VNS.

[elephant]

Wow that sounds real cool!

[pberggren1]

Thanks for the article Hammy. Sounds promising.

[gurinbasra]

Wow - thank goodness for those of you whom I've read that have recovered your hearing - I dream about this every day and have been for the last 3 years.

I lost my left ear right from the beginning as hearing loss was my first major symptom (senorinueral as the hairs in my cochlea had died). Been hanging on to the right ear and now about 40-60db only in the low frequencies so I have a hearing aid but no high frequencies at all. Yes, it's the second beast in my life, if I'm feeling well from the WG, then there's always the day to face not quite hearing what everyone's saying - sure puts a damper on life!

I went to a Tinnitus management class where they informed us Tinnitus can be caused by many things like medication or most common hearing loss. I only focused on the info about hearing loss because I know that's when I developed the tinnitus, and a way to help relieve it is through cognetive behaviour. For those of you that are really bothered by it, you have to learn to not attach negative feelings and thoughts to it. It's noise created by our brains because it no longer receives information from the ear, so the nevers just go setting themselves off, so there's no cure. It only bothers me that I'm so deaf, yet all I hear is "noise"! I miss not having a silence moment in life but then I laugh at all the ping and dings that just suddenly go off - I always imitate them at home so that my kids get an idea of why Isuddenly start acting funny. There was one time at work when I was ready to bolt out of the door because I thought the fire alarm starting ringing - then I noticed that everyone else was all calm and continuing with the meeting. As I was almost out of my chair, I ended up going to the washroom and having a good laugh, and now whenever an off sound starts on, I take a moment to think if it's in my head or if it's in the environment - thank goodness I have my eye sight!

Any of you with senorinueral hearing loss read up about stem cell's growing back the cochlea hair cells - go scientists, go!! Maybe when I'm an old 90 year old, I'll have better hearing than my grandkids - I can only hope even then!

[Sangye]

I totally agree with you about managing it with behavior. When mine started last year (before that it was very mild) I quickly realized I better learn to ignore it or it would drive me nuts. I keep an air purifier running all the time and it creates white noise. I taught myself to focus on the air purifier, which distracted me from listening to the tinnitus. At one point when the labryinthitis was in full swing though, the tinnitus was incredibly loud-- roaring and sounded like a car going around a racetrack. It was pretty hard to ignore that and I'm glad it didn't persist!

My ear docs ask me how the tinnitus is doing and I always have to tune into it right then or I wouldn't be able to answer. I'm surprised at how loud it is but I just don't let myself notice it.

[drz]

My tinnitus fluctuates a great deal, sometimes it is so loud it wakes me up at night. Some times it is a low hum like an AC running in distance or like when you listen to a seashell. Yesterday it sounded like crickets chirping for a few hours. I had heard this sound before in my ear with some limited hearing but always attributed it to my hearing aid. Yesterday the crickets were chirping in my deaf ear. I wonder if the tinnitus will go away if one has cochlear implant to restore hearing.

Has anyone got over tinnitus when their hearing improved?

[Sangye]

My ear docs have told me that there isn't anything they can specifically do about tinnitus. It doesn't mean there's no hope though. When we treated my acute severe hearing loss last year with high dose pred and steroid ear injections, the tinnitus greatly improved, too. Before we treated the hearing loss they said there is no way to predict if tinnitus like that will improve or even worsen.

[gurinbasra]

drz,

I know of two people that have had CI's within the last 4 years - one lady like us who has a rare AI - can't remember the name but she completely lost all her hearing and had to wait a year for a CI - she now has two. Anyway, both people have reported that the tinnitus has greatly improved with the CI, but it's back when they take it off at night. I specifically asked this question at the Tinnitus class because the audiologist there was part of the Calgary CI team and she said yes that because the CI works to specifically stimulate the auditory nerve, that the tinnitus is considerabley decreased. Are you still considering a CI? Have you talked to people who have it, they all say that it sounds very "mechanical" but you get used to it and are just happy to be able to hear everything - that's the key for those of us who have heard before, our brains don't need to be rehabilited to know what the sounds mean.

How do you cope with your hearing loss?

[pberggren1]

I am getting a little excited and nervous at the same time for my appointment with the CI team on March 1.

[drz]

drz,

I know of two people that have had CI's within the last 4 years - one lady like us who has a rare AI - can't remember the name but she completely lost all her hearing and had to wait a year for a CI - she now has two. Anyway, both people have reported that the tinnitus has greatly improved with the CI, but it's back when they take it off at night. I specifically asked this question at the Tinnitus class because the audiologist there was part of the Calgary CI team and she said yes that because the CI works to specifically stimulate the auditory nerve, that the tinnitus is considerabley decreased. Are you still considering a CI? Have you talked to people who have it, they all say that it sounds very "mechanical" but you get used to it and are just happy to be able to hear everything - that's the key for those of us who have heard before, our brains don't need to be rehabilited to know what the sounds mean.

How do you cope with your hearing loss?

With difficulty. I have cut back and curtailed many of my former activities cause there is no point in going to something where you need to hear to be able to enjoy it. My hearing fluctuates a great deal depending on how congested my Eustachian tube feels. Under right conditions with hearing aid working well I can converse with some one fairly well, but if the room is noisy or my ear plugs up or hearing aid battery gets low, I feel virtually deaf and can't hear person next to me well enough to understand what they are saying. I do best with things like TV set at home where I can adjust volume and replay things I miss on the PVR. Sometimes I still can't figure how what was said even if I replay a line three or four times. I can use the close caption if I really want to follow a TV program. i bought several pocket talkers but haven't found them to be much better than my regular hearing aid. I definitely plan to explore surgery option when they tell me it is safe to do so.

[Chas]

My symptoms started in July 2010 with joint and muscle pains moving all over. My GP referred me to a consultant rheumatologist who discounted Rheumatoid Arthritis. Symptoms disappeared for the next five months till I started losing my hearing in both ears in October, completely in left and 80% in the right ear.
I was referred to an ENT consultant in December who thought I had glue ear and inserted grommets which didn't make any difference. I also was seen by a respiritory consultant who failed to diagnose wegeners.
Two weeks ago the joint & muscle pains returned with a vengenge and I was admitted to hospital where after a kidney biopsy vegeners was diagnosed.
I have been on treatment(prednisolene, cyclophosphamide etc.) for two weeks now and my hearing has started to recover by at least 50% in each ear which has made a vast difference to my life. The aches and pains have also abated for now. Doctors say they are hopefull of my hearing returning to normal.

[elephant]

Are you seen a Wegeners specialist? The Audiologist can help determine if you have permanent nerve damage.

[Chas]

The ENT Consultant who diagnosed me said he didnt think any permanent damage done but my body was producing fluid that had closed my inner ear(glue ear).
Wegeners specialist who is treating me sees no reason why hearing should not return. So far I am very pleased with the improvement reached in two weeks since treatment started.

[Natalie]

Hi Chas, How is your hearing going now ? My wegs started with my ears and like you doc thought Glue ear and was forever getting them sucked out and also about 5 sets of grommets . they did settle down after a few years of ups and downs but I guess I have got used to them ringing now ,, my Right ear has returned to perfect and makes up for my shitty left one . But was a tough few years when they were really bad , I can relate to Drs posts about his trouble in public places and unable to hear the person standing right beside you ,,:(

I hope your ears continue to improve .. good luck with it all Nat