POZ Community Forums
Main Forums => Living With HIV => Topic started by: xyahka on August 04, 2007, 12:08:57 am
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A friend from Ecuador told me i could become deaf if i have CMV after being Hiv+, some other friend in here told me CMV retinitis only causes blindness... so i am confused. I did a search among threads before posting this question but i didn't find any answer... i guess i have to ask it :-\... can i become deaf due to Hiv related CMV,Hiv related Toxoplasmosis or any other Hiv related OI? which one causes it? how often it happens? how can i prevent it?
Juan Carlos (scared, anxious and worried about this)
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Juan Carlos, I don't know about the deaf part, but the blind part yes. However, most every poz person will test positive for CMV and they don't get blind unless their cd4s are abysmally low which of course should not happen as long as you are on HAART, or have an adequate number without meds like you show in your signature line.
(or at least this is my understanding of the issue)
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Hi Juan Carlos,
I don't recall seeing a mention of loss of hearing due to HIV. Your post make me think that I don't think my doctor tested me for CMV!
Milker.
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The forums search engine must only be working for Australian IP's. This issue was discussed in this thread (http://forums.poz.com/index.php?topic=12155.0) back in May this year.
MtD
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Juan, you can have an OI that can cause loss of hearing. I lost my hearing, while being in the hospital of all places in my left ear due to Disseminating Histoplasmosis. I'm totally deaf in my left ear.
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I went to see another ENT guy last week. I have severe hearing loss in my left ear. He told me my middle ear has a hole in it. I have constant drainage so a hearing aid won't do any good; it would always gets plugged up. Ugh. That's disguesting. This occured during/after my experience with pneumocystis 3 1/2 years ago.
But he did say they could repair the hole by grafting some skin over it. It's elective surgery that takes 3 hours. I'm going to go for it. Now I'm just waiting for them to call me back and schedule a time. Of course I haven't told my own ID doc about it yet. But I will.
robert
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Juan,
Do a Google search on hearing loss and hiv and you'll get plenty of hits. Here's a small selection:
http://www.drf.org/hearing_health/archive/2004/sum04_hearinghelpneeded.htm
http://www.drf.org/hearing_health/archive/2003/fall03_hearingandhealth.htm
http://www.dizziness-and-balance.com/disorders/hearing/aud_neuropathy.html (I've mainly included this one because of the detailed diagram of the ear)
You might like to take note that many of the articles you'll get in the search are from the 1980s/early 1990s - in other words, before the PIs came out and HAART became the standard of practice.
For someone fairly newly infected and who has access to the meds when indicated by falling numbers, it would seem possible deafness isn't that big a concern. It's more a concern for someone without access to meds or someone who is diagnosed with advanced hiv infection.
Ann
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Thanks for those links Ann. I did not know about the hearing connection. I actually have hearing difficulties in my left ear, and have had this for ages dating back to around when I was diagnosed. I never gave a thought to it being connected and simply blamed it on lots of hours in night clubs and on screeching subways. I suppose it could still be those other factors, but I do know that CMV showed up the first time I was tested, and of course I had <200 cd4s back then and probably went 5 years previous to that without being diagnosed.
I'm not deaf though, but it does mean I've never bought an iPod nor can I turn stereo speakers up very loud (hence why my neighbor's complaints about loud music fall on... deaf ears!) In fact, even having my built in speakers on my computer on the loudest setting often cause my left ear to crack.
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You're welcome, Philly. At least you got something out of my taking the time to look into this issue. The original poster seems to be far more worried about other dramas to read and comment.
Ann
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Thanks for the info Ann. I lost the hearing in my left ear when I had the shingles, it came back but not 100%.
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Very interesting links Ann. During my ASL studies HIV/AIDS was never mentioned as potential cause for hearing loss, and we did go through a list of many diseases, however I notice that Gallaudet (a university for deaf and hard of hearing people) does lists HIV/AIDS!
"Infection by the human immunodeficiency virus (HIV) can result in AIDS or in AIDS-related complex (ARC). Both are associated with neurological complications that often include hearing loss. "Auditory system anomalies" afflict an estimated 75% of adult AIDS patients and 50% of all ARC patients. Hearing disorders may be caused directly by HIV infection of the cochlea or of the central auditory system, but are often caused by opportunistic infections rather than HIV itself-i.e., the body's loss of its normal resistance to infection allows other non-related infections to take hold. The most common of these opportunistic infections is cytomegalovirus inclusion disease (CMV) (q.v.), which is found in over 90% of AIDS patients. EDHD2 p.7."
Milker.
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Got say thanks to Ann for the info as well.
I've had hearing loss due to nerve damage which I don't attribute to HIV however there has been a pronounced decrease in hearing loss in the last 2-3 years and now I'm curious if I should discuss with my ID doctor.
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Iggy, mine was sudden hearing loss and there is nothing they can do even though they tried. In your case yes advise your doctor if you've noticed it so that you can get you into ENT. You want to save your hearing as much as you can.
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Thank Rapid.
I had my hearing checked before I was positive and the tester was amazed at what I could hear based off of the pitch tests. She had stated that I've adapted extremely well to my hearing loss and apparently had the most difficulty with High pitch sounds and women's voices (even my hearing says I'm gay ::))
However I realize thinking about all of this now, that I started to get sinus infections only after contracting HIV which I think has played a part. My viral load has never been undetectable and I'm not on any meds, so I agree that it is worth exploring with my ID doctor. It may be HIV related or not, but I guess this has all lit a fire under me to not ignore it any longer and find out.
Thanks
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Maybe I should irrigate my ears with a turkey baster.
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Maybe I should irrigate my ears with a turkey baster.
What?
;D
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I will say thanks in advance Ann for the links. At the moment I am taking down my braids but next break I will take a look...The things a Queen must do to look good..*Sighs*... ;D I noticed from Milker's post it says hearing loss can happen if you've had OI's. I never had any so I don't attribute my loss to hiv. Do me a favor and post some links concerning diabetes and hearing loss...Serious because I need to do it but j/k because I will get off my lazy ass and look for myself.... ;D My ENT told me that diabetes can cause hearing loss then he started up with all the medical jargon which made me appear to have a blank look on my face and head tilted to one side.
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I'm glad the links I provided are useful. I have to admit they got me thinking too.
Those links were only the tip of the iceberg I got by Googling hearing loss and hiv. Make sure you take note of publication dates. You have to keep in mind that much of the available material was published pre-PI and HAART. Stick to the past ten years if you can. It's also very important to evaluate the source of the information you read and look for credentials. You want reliable up-to-date information.
Our hearing is precious. We're encouraged to have regular eye exams and maybe we should be having hearing tests as well.
Is this something we should be advocating for?
Ann
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Hey Ann,
The links are very interesting. Back in 2005, I had a hearing test for a job I for which I was applying. At the time, several of my friends insisted I was hard of hearing.
The tests came out fine. The guy said my hearing was normal for "someone of my age."
He was a twit.
Anyway, I had never heard of HIV-related hearing loss - until now. I am somewhat hard of hearing, especially in crowds or in a noisy room.
I don't know if its HIV-related or age related or disco related. Heaven help the kids today with their car speakers loud enough to rattle my windows from a block away.
But this is interesting and I think it may bear checking into further.
Thanks again.
HUGS,
Mark
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Our hearing is precious. We're encouraged to have regular eye exams and maybe we should be having hearing tests as well.
Is this something we should be advocating for?
Ann
What angers me is that health insurance will pay for me to be told I need hearing aids but then won't pay a dime towards getting them as they are listed as something like an unessecary expense (forget the B.S. classifcation reason)
My hearing loss is pitch specific and requires digital hearing aids that are programmed specifically for the pitch loss that I have issues with and they ain't cheap.
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Yeah, interesting to see those studies in the early 90s. Obviously at that time there was a study for every disease possible that would be caused by HIV..
If google gives me too many things that are old, I like to force it to restrict to the last year. You go to "advanced search" and there is a date parameter. Choose "last year", then click on the "google search" button. This "last year" parameter then appears with the result page, and you can restrict to even earlier, e.g. 3 months.
Here is what "hearing loss hiv" returns with this parameter:
http://www.google.com/search?hl=en&safe=off&as_qdr=y&q=%2B%22hearing+loss%22+%2Bhiv&as_qdr=y
You can also make sure that returns contain "hearing loss" and "hiv" by typing:
+"hearing loss" +hiv
And since you're lazy ::) here is +"hearing loss" +diabetes with the last year parameter:
http://www.google.com/search?hl=en&safe=off&as_qdr=y&q=%2B%22hearing+loss%22+%2Bdiabetes&as_qdr=y
Milker.
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Yes, the early studies may be interesting, but the point is, do they apply today? Please remember to check your dates before spending too much time on old material. Go for the up to date stuff. Where an old study is relevant, it will be quoted and cited.
The field of hiv/aids is fast moving and it pays to concentrate on up-to-date information. I cannot stress that enough, along with making sure your source is reliable and creditable.
It's our health we're talking about here and we need to get it right.
Ann
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What angers me is that health insurance will pay for me to be told I need hearing aids but then won't pay a dime towards getting them as they are listed as something like an unessecary expense (forget the B.S. classifcation reason)
My hearing loss is pitch specific and requires digital hearing aids that are programmed specifically for the pitch loss that I have issues with and they ain't cheap.
Iggy,
I felt the same way when my ENT doc told me I needed hearing aids. They referred me to a program called Hear Now, not sure if you have anything like that where you are. You pay 2 hundred out of pocket and they would pay the rest. I didn't even have the 200 to give them so I went to my case manager at my ASO. They were going to use some fund to pay the fee when the Office of Vocational Rehabilitation paid for them. I have Starkey hearing aids which are digital and suppose to be considered the best out there and so I am being told.
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Sorry if I hijack but what is ENT ?
Milker.
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Ear, Nose, Throat
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Ear, Nose, Throat
Thanks :)
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"...What angers me is that health insurance will pay for me to be told I need hearing aids but then won't pay a dime towards getting them as they are listed as something like an unessecary expense (forget the B.S. classifcation reason)." <iggy>
This is why the ENT guy recommended surgery. Other than the fact I have constant drainage, the hearing aid would not be covered by insurance and the surgery would. His exact words.
robert
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"Can i become deaf BECAUSE OF HIV related OI?"
Yes, indeed, you can Juan Carlos. AIDS dementia is also very real.
Brent
(Who has seen it all many times before, and other things, too)
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Juan,
Myself, I am dealing with Tinnitus, as several others are, here on the site. For me, It's a constant high pitch frequency in the ears that doesn't go away. Some days can be worse than others. It also started shortly after I began on antiretrovirals.
Ray
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JRE I have the same thing. We can't decide if it's from chemo or haart I started both on the same day.
It's quite annoying at times.
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I had the tinnitus thing for awhile shortly after beginning HAART, but mine did go away. It was annoying as all hell, though. And it really did mess with my hearing a lot. I had to have people talk above the ringing in my ears.
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That is what I am dealing with as well. But I think I had miine prior to meds.
And, yes, it is very annoying.
HUGS,
Mark
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Hi thanks for all the info, got lot to read and to think about... Need to buy a medical dictionnary as well :-[
Juan Carlos
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Need to buy a medical dictionnary as well
Maybe not:
http://www.nlm.nih.gov/medlineplus/mplusdictionary.html
http://medical-dictionary.thefreedictionary.com/
http://www.interfold.com/translator/
http://www.interfold.com/translator/medsites.htm
There are plenty more available too, just Google medical dictionary and/or spanish medical dictionary.
edited to add more links
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I want to add to this, I had loss of hearing in both ears, (couple years ago) they were filled with mucus, which had to be drained and vaccummed out buy an ent, I had tubes put in. The ent told me that it is common for hiv patients to have problems like this, my estachian tubes were swollen and could not drain or regulate air pressure properly. since I have been on harrt, the ears have been working fine, and so far I haven't had to go in for more tubes or ear vaccumming.
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I want to add to this, I had loss of hearing in both ears, (couple years ago) they were filled with mucus, which had to be drained and vaccummed out buy an ent, I had tubes put in. The ent told me that it is common for hiv patients to have problems like this, my estachian tubes were swollen and could not drain or regulate air pressure properly. since I have been on harrt, the ears have been working fine, and so far I haven't had to go in for more tubes or ear vaccumming.
OMG :-[... glad things are going better for you now...
Juan Carlos (taking a deeeeeeeeeep breathe..... :-[)
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Very interesting thread for me. I have had intermittent but dramatic hearing changes since I was a child, due to complications from allergies. At age 6 I had a 70% loss in my left ear, but it recovered.
Two years ago in October when I went off meds for study, I saw my ENT for a sinus and ear infection, and he was concerned about possible OIs, though pleased that I had "healthy" CD4s--as a result, I send him a copy of my labs, so he knows I'm doing well with the hivvies, in case I wind up back in his office. Sure enough, at least once in the spring and once in the fall, I bloom a nice something in my ears and sinuses from fluid collecting from allergies, but it responds swiftly to azithromycin 500mg bid--I'm currently on azithromycin in spurts for prophylaxis.
As for the links, I was troubled by the seemingly dated blurb from Gallaudet.... ARC???!!! WTF???!!! I have several friends there among the faculty, administration, and student body. I'm interested to see if they can help produce some enlightenment for the school's website and community, as well as HIVers, on this matter.
And as for Google.... the last-updated metadata for pages is far from a guarantee of currency. What was updated may have been an unrelated link, an image, or punctuation. One must read EVERYTHING with a critical mind regarding the age of information and the knowledge and spin of the author.
Peace,
David
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As for the links, I was troubled by the seemingly dated blurb from Gallaudet.... ARC???!!! WTF???!!! I have several friends there among the faculty, administration, and student body. I'm interested to see if they can help produce some enlightenment for the school's website and community, as well as HIVers, on this matter.
This was from 2002, something I found using google. I'm sure there is a better document now on their website. I used that quote because 2002 was the year I was studying there, I should have made this more clear.
Milker.
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Like I said before, my ENT never mentioned hiv being the cause of my hearing loss. He thinks it may be because of diabetes but from how he talks, I don't think he is sure of that either. No one has mentioned putting tubes in my ears or anything. The only concern was that I had lost 20 decibals of hearing in one year since the time I was diagnosed. My hearing has been tested since then and no further loss.