ANA Discussion Forum
Archive => Archives => Topic started by: Monica on November 08, 2005, 10:22:20 am
-
I am writing on behalf of Shanne of Singapore. She had surgery on 7 November and as she expected lost the hearing. However, the day after surgery she suddenly could not hear out of her good ear. Has anyone heard of this? The ENT doctor examined her and could not find any reason for this to happen. Her sister wrote to me on her behalf and asked me to post this. Any insight would be greatly appreciated.
Thanks
Monica
-
Hi Monica, I can't give you any info about the loss of hearing but I do want to thank you for letting us all know how Shanne is doing. Please give my prayers and thoughts to her and my wishes for a speedy recovery.
-
Hi Monica / Wind6,
My name's Andrew, and i'm Shanne's husband.
Shanne is still currently recuperating in the hospital now. The good news is she's beginning to pick up some signals from her ears. Thank god! It was discovered when i jokingly threw the stone-hard loaf against the table on Saturday. Sorry, i didn't mean to play with food, but it sure brightens everyone up upon the discovery. However, her signals are still very weak. She could only hear loud noises at this moment.
She had already started sitting out of bed since yesterday. Her balance is not fully regained yet though it's already her 7th day. I sure hope to see her in better shape when i see her in the next hour.
Last but not least, i would like to thank all of you who had constantly kept her in your thoughts and prayers. Praise the lord! Thanks a milliion!
Best Regards,
Andrew (Singapore)
-
Andrew,
I praise the Lord for this and pray this is only the beginning. We will continue to lift your family in our prayers.Thanks for keeping us posted.
Lynn
-
Hi Andrew!
Thank goodness the hearing is beginning to come back!
I have heard of opposite side ( contralateral ) hearing loss post op and it has been hypothesized it is due to AIED, Auto Immune Ear Disease, caused by the original surgery.
Best wishes!!
Russ
-
Ah, Ha.
Just my field of expertise. I have not had surgery for my AN, however, I did suffer from deafness in my only hearing ear 6 weeks after my other ear went 100% deaf. I was diagnosed with AIED.
I have researched this and researched this. There is a 6% chance of a sympathetic hearing loss in the non-AN ear after surgrey. It is treated the same way as AIED. With Prednisone high doses and a long taper. Only 1.6% of AN patients have AIED diagnosed. It is very hard to get the blood test done to diag. this and you can't be on steroids when it is done. At any rate ask the doctor about prednisone. The timing of the sterods is very important, if treatment is delayed the hearing loss could be permenent The results of the AIED blood test takes about 6-8 weeks to get back and by that time the hearing loss is more than likely perm. My hearing loss was treated within 48 hours of the loss and has returned to about 95% in the hearing ear.
-
Hi Russ,
My wife's non-AN ear has only managed to resume about 50% of her hearing. It's already the 3rd week since her surgery was performed. Her hearing loss started off the 2nd day after surgery when she was given Maxolon to ease her nausea. According to her, she was hearing well before that. Her hearing started to fade away gradually after the jab till the point she can't even hear herself speaking; 100% deaf.
It's only till the 6th day then she started to hear loud noises only. Could all these be related to AIED as well?
-
Hi Okiesandy,
Your information is starting to give me the creeps. This sounds serious. My wife can't afford to lose her ONLY hearing. Can you kindly provide more information about this possible AIED? Is Prednisone a medication for this AIED? How is this AIED related to Meniere's Disease? What do you suggest we do now since it's already the 3rd week since her surgery? We're scheduled to see her surgeon again this coming wednesday.
-
Hi Monika!
Of course I'm not an expert in this or anything for that matter. - smile -
You may review this link: http://www.dizziness-and-balance.com/disorders/autoimmune/aied.html thoroughly if you wish.
Predisone, as I understand, is standard treatment for the disorder if diagnosed. My understanding is diagnosing it is not all that easy though. Immunosuppressant meds may be Rx'd also, and the sooner, the better, for both meds if a declination in the hearing continues. If it stabilizes or continues to come back, one might say the etiology ( cause ) of the contralateral loss is unknown.
I have read stories and reports of sympathetic opposite side losses of both hearing and balance. This may be the bodies attempt at equalizing things. Strange, but true. It is also known in some that one sided hearing can cause dizziness in a very few.
My feeling if this were me, I'd ask to try a couple runs of steroid to at least see if it helps. Some have quite a few side effects from steroid however. In some, dimethylprednisolone in lieu of prednisone may exhibit with fewer side effects.
Re: The other med you mentioned and the timing, No Dr. here, but I feel the use of the med and hearing declination was merely coincidental.
I hope the upcoming Dr's appt. is helpful!!
Best wishes always!
Russ
-
You can not wait for a diagnosis. The test takes about to weeks to get the kit then 6 to 8 weeks to get the results. There is no 100% way to tell if you have it or not. Only that you have the Anti neuclar antibodies the could cause it. It is your own immune system that is attacking you. Plead with your doctor to give steroids. Call the House Ear Clinic and talk with one of the doctors they will tell you exactly how to treat it. By the time you wait for all the tests it is too late. The correct name of the problem is Auttoimmune Inner Ear Disease. It is very rare. Also, 6% of AN surgeries result in something called sympathetic loss of hearing in you good ear. A good doctor will just start the steroids on a taper. Do not hesitate to get the information to the doctor.
Sandy Paschall
-
Please, please go on the internet and look up Auttoimmune Inner Ear Disease. This is what caused Ruch Limbaugh to lose his hearing.
I lost 50% of my hearing went on steroids and got back 95+ percent of my hearing in my good ear. It has been stable since July. I take a hearing test every 6 weeks. so far so good. He hearing goes quickly with AIED. Prednisone is the only treatment for this and it must be done as soon as possible.
-
She had just seen her neurosurgeon last wednesday. We raised our concerns on the possibility of AIED but the doc is doubtful of it. He said her hearing is returning bit by bit now, comparing to the time when she could hear zero. We too mentioned about Prednisone but he said it was normally used in conjuction with chemo, hence not advisable. The medication would cause her to be weak and other effects like water retention.
I'd done some fair bit of research on AIED as well as Meniere's Disease. Doc ruled out any possibility on any of these. In fact, he had called upon an ENT specialist as well as a neurologist to see her when she started to lose her hearing on the good side. None of them found anything abnormal. Blood tests, CT and MRI scans were all good. She currently on mainly vitamins and supplements to boost her immunity and recovery. Doc didn't want to put her thru too many drugs.
I certainly hope the doc is right with all the diagnosis and her hearing will return soon. What do you all think? Any views to share?
-
I also just bought her an electric-pulse massager, or what they call it as a nerve simulator in medical terms. I hope it'll help her to speed up the recovery. We're also considering putting her thru accupuncture when she regains more of her balance back. Hope it'll help with her hearing. Had you guys too gone through any of these alternative treatments?
-
Andrew,
I can only speak from my expierance and what Dr. Brackman with HEI told me. AIED can only be tested by 2 labs in the U.S. and it does not show up in a reg. blood test. As I said two weeks to get the kit and 6 to 8 weels after test to get the results.
Look under sudden hearing loss. Dr. B. told me sometimes after surgery or loss of hearing in one ear, the other ear loses hearing and their standard treatment is Pridnisone even if the loss is sympathetic. It is the standard treatment at HEI and many other centers of excellence here in the states. Prednisone was never done in conjuction with chemo for me. In fact I was told that the latest studies show that the low dose chemo probably does not contribute to the sustained improvement in hearing. The steroids are only for a short time 2 1/2 weeks and there may or may not be some side effects. At any rate they are very temporary with short term use. Mostly just loss of sleep and high, high energy level. I have had to do this twice because when the found the AN I had lost hearing suddenly in that ear. Over only 2 days. Hearing did not come back in the AN ear, however a few weeks later I lost hearing in my only hearing ear and was treated with prednisone again. This time with an hunger that would put a horse to shame.
The sheer panic caused by the sudden loss of hearing in both ears is something I could not even discribe. The doctor I was using at the time was about as warm as yesterdays dish water and kept saying I could have an inplant if I lost it permently in both ears. One ear loss is hard to deal with, both ears is horrible. Give you wife a hug and keep researching. Sometimes the doctor knows best and sometimes he doesn't. Go with the gut feeling. The sympathetic hearing loss, sudden onset hearing loss and AIED are so rare that most doctors never see a case in their careers. By the time they lose their egos and admit there is a big problem it is too late. I would ask how much your wifes hearing has returned now? It is almost to late to start on steroids if the doctor would approve it.
-
okiesandy,
At the present moment, she can only hear about 50 to 60% on her good ear.
i'm in a loss now; don't know what to do next.
Is it too late to do anything now, if we could?
-
Andrew,
A left field suggestion - Has Shane been checked out for an infection in her good ear (water on the ear)? I had surgery 3 years ago and thankfully my other ear didn't suffer from AIED (no-one ever told me about it as a potential issue). Another reason for the benefits of this site. Anyway, my tumour has recently returned and I also felt some blockage in my good ear, particularly when going up and down lifts. I firstly went to my GP who spotted an infection and gave me a few unblocking exercises to do - Its done the trick.
Larry
-
Andrew,
I can't understand the doctors position on this. It is just standard practice here to start prednisone for sudden hearing loss no matter what the cause may be. The suppositon is it could be and not to delay. I know it is best to start the steroids with in 72 hours. However, after two or three months it is usually to late for it to be effective.
I think the best you could do is show your doctor what the House Clinic does and any other research on Sudden Onset Hearing Loss, AIED, or SSNHL and how it is treated and ask for it to be tried on her if she is willing. It is short term at the onset and if the hearing returns that is usually the end of it. Unless she has regained her hearing on this treatment and it goes again somewhere in the taper.
When I talked with Dr. Brackmann he said my good ear would be tested within 3 days of surgery and if any hearing loss was found they would immediately start me on steroids. My doctor here also suggested that this is standard practice with any patient after AN surgery where the hearing is completely lost in one ear. My local doctor is very cautious and would not do anything that is the least bit on the edge.
Do you think her hearing is improving? There is some evidence that in cases of sudden hearing loss , some of the patients will have hearing return with out treatment. I am not a doctor and can't give you any advise except to keep researching and try to push the doctor or go to another one. SOON!!! That is if you and your wife think she fits into the catagory that would benefit from Prednisone. I am not sure why your doctor brought up Chemo at this time. Usually they just try steroids to see if the hearing will come back.
Sandy
-
Hi Andrew
I agee with Sandy! I was put on prednisone when I first lost my hearing on my an side...there is a small window that it will help. The ent doctor mentioned a surgical procedure but said since my hearing didn't repsond to the prednisone thant it was pointless. I'm now having ringing in my right ear, guess it was feeling left out from allt he attention the left ear was getting. When I talked to several of my doctors that said it was sympathetic hearing loss and not to worry yet..easy for them to say. My MRI done last week showed nothing wrong so who knows. I'd want to try to prednisone just to be on the safe side. Chemo was never mentioned to me.
Keep up the faith and go with your gut instinct had I of not I'd be dead right now!
All my best,
Michelle
-
Hi all!
Sorry for the late reply. I overlooked the 2nd page of this thread and missed your posts.
Well, i'm pretty concerned about the surgeon's reluctance to put her steriods or Prednisone which you all had suggested.
We've tried to seek the advice from the ENT doctor too but was again ruled out on the possibility of AIED.
I don't understand the what the doctors here are thinking, but the ENT doc had suggested to put her thru' HBOT if we're willing. Please see my HBOT thread.
As mentioned in my previous post, Shanne is about 7 weeks post surgery now and i'm uncertain of the positive effects she could benefit from Prednisone. Are there any effects from taking Prednisone or any other steriods used to treat this condition? Her surgeon had mentioned side effects like bloating, water retention and physical weakness.
-
Hi all,
One more thing to mention.
She had a hearing test done again on Saturday and a slight improvement has been observed.
However, she's still unable to hear clearly. She has to look at you to figure out what you're exactly saying.
This is one piece of good news but the results are slow.
-
Andrew,
The small bit of improvement in you wifes non-AN ear is good. I still can't figure out why the doctor would rule out AIED if he has not done the test for it. Sympathetic hearing loss is a possibility.
I ask my neurotologist about the hyperberic treatment and he said the prednisone was tried first. He gave me some studies done on that and some other things such as chemo. In the long run they did not show conclusively that they helped because most are done in conjunction with the steroids.
You ask about long term effects of the prednisone. None that I can tell. I have had three doctors tell me that any damage I would suffer would be short term and nothing lasting. That has been the case. I would take bloating and some sleepless nights any day over loss of hearing. I guess they just practice medicine differently in your country. Here, steroids would have been given from the day she lost hearing. Understand the duration of the steroids has only been two weeks treatment each time I was on them.
If you even think your wife may have any kind of autoimmune disease she should not do anthing that would boost the immune system at this time. Even with AIED sometimes there is a return of hearing even with no treatment. At least it is returning and my return to a good level. I am so sorry she has to go through this.
Blessings,
Sandy