Adjustment to late onset deafness

Hmmm. Cerebral edema? I just remembered I had watched a movie about Bruce Lee a few months ago and thats what he had.
 
First diagnosed with Sepsis (blood infection, bad) then after seizures diagnosed with P.R.E.S. basically brain swelling but serious. That's why I'm afraid of CI surgery and the pressure. I do feel lucky however because the fatality rate for Sepis is fairly high. When I was first feeling somewhat better the brain doc didnt think I needed a follow up MRI. I'm beginning to question this. I just want to make sure there are no more surprises around the corner. If I do decide on CI I wouldn't do it without an MRI first. God my glasses are so messed up. Need to get done new ones. The brain swelling took away some memory and I have different food cravings then before. I'm sure that typing on this site aggravates my head, but it's worth the info. I do take e eryones opinions seriously. All help is appreciated. Ther are no known cases, at least in my area that Sepsis or P.R.E.S. cause deafness. They can't explain why this happened. The day before I was fine and the next morning close to death. Gave me a real scare. The whole month in the hospital I s
Was completely out of it, I don't remember a thing.
 
Sorry that you experienced that. Its sounds like you're psychological issues are related to that traumatic event and not the hearing loss per se. That's a lot to go through!

Keep in mind that pity doesn't play in deaf culture. For example, you'll find sympathy if you tell the story about this scary traumatic brain swelling issue. If you just say that you're freaked out about the hearing loss, you won't get much sympathy. It's not that deaf people don't care, it's just that deaf people don't see hearing loss as a "plight." A lot of people come to the deaf community expecting pity and they are disappointed when they don't get it. What you will find in the deaf/hoh community is understanding and companionship. It's just going to take a while to learn about deaf culture. It's different than hearing culture.
 
I don't want pity at all. I only want supportive input. There have been so many helpful people on this site. I just wanted to know if the problems I'm having we're related to losing my hearing. That's all. I now feel I have the information at hand when I see the specialist. The only reason I spoke about my illness was to explain how I lost my hearing. Especially since there dosent seem to be anyone else's that this illness has caused hearing loss. Doctors can't explain.
 
Not on a conscious level, but it's normal to want sympathy when you're in a challenging situation.

Doctors have been useless to me with my health problems. I have some kind of syndrome but medical care offers no diagnosis or treatment. That's just the reality of my situation. I hope that you get the answers you're looking for, but you may not. I hope that you get some treatments that give you some relief, though. My rheumy has helped me a lot.
 
Hi fellow L.D.A's. I hope everyone had a Happy Thanksgiving. The reason why I'm posting in this thread is because I'm also a late deafened adult, (37, recently diagnosed severe/profound bilateral). I got new Phonak Naida S III UP about two weeks ago, Nov. 8th. I really love them! This Thanksgiving was great for me and my family. I can now hear my family at the dinner table, understand what conversation is about without as much draining focus as before. I was able to be in the kitchen and hear my Dad and brother talk about some photgraphs they were looking at, without having to stare at them and lipread. And this is without the full power of the HA's or the volume turned up past mid-level. I can now hear my Mom's voice and 3yr. Old daughter's (high frequecy) I love hearing the "crispness" of words, the sound of T, P, C, S,. Everyone sounds so sharp and crisp. I can hear my cats meow for food!
This Thanksgiving, I was so thankful for the gift of hearing from my new aids for today. I am thankful for such a great, understanding, patient family. I am grateful for what science and technology has to offer.
I have a mixed hearing loss (sensorineural). Only time will tell how much longer the less than 20% in low freq. I have left will last. But thankful today for what I have.
Hope you all are doing well today! :)
 
I'm so happy for you. What a beautiful post. I had my first Thanksgiving being deaf. It was harder than expected. The football game was on very loud and all of the talking made my head spin, so to speak. But, at least I went to dinner which I haven't done for awhile so I'm proud of that. It was a little strange after I took a nap after dinner alone in the living room to wake up with everyone sitting around me watching football. Oh well, had a good nap!!!
 
Thanks Angie 1989. I feel so bad that you had your 1st Thanksgiving deaf.
Were you HOH last year? I am close to deaf.. Without hearing aids, I have about 20% left in low frequecy only at 100Db. (Right ear is worse, because higher volume makes my ear feel vibrations inside,very intollerable, "low noise tolerance", who knew I could have that when I cant hear anyway! HaHa!)Thank goodness for what my audio. Says my new HA's have, compression..
Do you wear any hearing aids?
Have you ever worn them, or considered learning ASL or an implant?
I told my family I want to start going to a Deaf school to learn ASL in jan (my christmas and birthday gift) My sis got my toddler and I the entire Signing Time DVD collection, so We are learning and practicing a lot from those too. Have you tried alternate communication methods with your family?
I know how isolating it can be, and how hard it is to get the family to understand. I try to look at the positives, like, hey at least I can sleep noise free and better than any of you even when the game is on. :)
Keep your chin up. I know how it feels. Hugggs to you!
 
Thanks so much. I talked about my health scare in other posts but I will give you a quick version? May28,2011 perfect hearing, May 29, 2011 I went totally deaf. I was gravely I'll and the outcome after a months stay was being deaf. I'm told I have NO hearing left. So I'm not sure if HA will work. Will get answers soon from the specialist. I have gained so much info in this site and feel I have the right questions to discuss this with him. I am no longer the "quiet deaf" I will make my decisions and with everyones help it will be the right one!! I pray to be able to hear somewhat so I can listend for our daughters names being called at UC Davis graduation. Also, would love their piano music to fill the house once again. They play beautifully and when they come visit I would just sit quietly in my chair and bring it all in. I want to hear my mom also. We're best friends but communicating with her is very hard. She's 80, Irish and computers are foreign to her. So I would like that very
much. It might just be a dream but I like to dream big!!!!!! I just purchased our fist ASL training books and DVD to hopefully catch on a little before we can find a class. The classes are always full by mostly non deaf students who want to learn the language. Thanks for asking. love from California
 
Oh, I wanted to add that me being deaf is not quiet. I get a very loud (sounds like an air compressor) in one ear sometimes both. Then I get fire crackers quite frequently. I do however at times get some music which I'm happy about. Usually inspirational songs that I like to think they come from my father who passed a few years ago. Let mr know how your HA work out for you. Seems like your off to a good start.
 
Hi Angle 1989.What you are doing-to find out exactly the medical situation is what you should be-seeing specialists. Hopefully after their review-you will get the answer-now what.
As you can appreciate some of us have very different "hearing problems" but each of us has to deal with our "medical reality". Thus it can "hard" to advise anyone except to what each of us has specifically experienced.

Much success at your doctor's visit in December.

Implanted A B Harmony activated Aug/07
 
Angle1989 said:
I don't want pity at all. I only want supportive input. There have been so many helpful people on this site. I just wanted to know if the problems I'm having we're related to losing my hearing. That's all. I now feel I have the information at hand when I see the specialist. The only reason I spoke about my illness was to explain how I lost my hearing. Especially since there dosent seem to be anyone else's that this illness has caused hearing loss. Doctors can't explain.
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Angel, I have not been following all of your posts. Have you been seeing an ENT? One reason I ask is that I have been referred to see one (I am profoundly deaf as it is, have been since birth, so this is not new for me) because I am dealing with such severe allergy/sinus issues. My ears are constantly feeling "full" or "plugged" these days. Maybe just one aspect for you to look at?
 
Thanks AlleyCat. I have looked into that (sinus/allergies) but that was not the problem. I'll stop trying to guess until I get more information from the specialist. I really appreciate all of your input, it's been very valuable. I feel blessed to have met people like you and feel incouraged that I have you in my life for this difficult journey. To those trying to help me, I will let you know the next step of my journey when I see the specialist. I have a difficult time trusting some decisions made by my doctors when they can't even tell me why I went deaf. Dealing with the "side effects" as they say is hard for me to understand. I haven't heard from anyone here that my symptoms are common to becoming deaf. Head fullness, loud noises, fire crackers popping etc. I have knowledge now and won't be so easily persuaded that this is a "normal" adjustment to losing my hearing. Thanks again to all who care.
 
Angle1989,

I'm glad you finally found your way into the late deafened thread, and are feeling more welcome and at home here as a result.
 
Jilio, good to see you here. Hope you're feeling better. :wave:
 
hohDougRN said:
I still get some anxieties when new physicians or nurses begin to work in my unit. I think it is a little bit of ego though. I feel I have to prove my skills and professional capabilities to anyone new. That can make me feel cold and insensitive.

For new AD'ers; I lost my hearing with one semester left in nursing school. I felt devestated. I went from being near 'overconfident' to completely insecure. After a couple years, I finally got HA's and it made a good difference with my private and professional life. My insecurities with some people remain. I still get angry and spitefull when it comes to music and singing. I loved to sing, but now I will NOT do it around anybody. Also, I think I have extreme insecurities with starting a relationship with anybody. I want to go to grad school SO bad to be doctor in genetics. I make excuses every year for not applying, but I really know inside my reason.
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When I was at ER once I had a doctor that was HOH , I think you should go for it . I really liked having a doctor that HOH , I felt very comfortable and did not have worry about the doctor thinking I was stupid because of my speech. We need more HOH doctors !
 
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