ANA Discussion Forum
General Category => AN Issues => Topic started by: Kathleen Ann on November 19, 2011, 01:15:32 pm
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Hello everyone!
I'm was just diagnosed 11/09/11 with a 2 cm AN at Mayo clinic. I will be having surgery on 2/07/12. My doctors will be Dr. Link and Dr. Beatty. I've been reading this blog since shortly after getting the news. It's good to see that all the symptoms I have others have had as well. I've also discovered that my symptoms have symptoms and can't wait for these to go away. At least I'm praying for that anyway! I only have 20% hearing in my right ear now and after surgery I will be SSD. I was wondering how you all deal with this at work?
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Hi, Kathleen Ann ~
Welcome to the ANA website discussion forums. Although I'm sorry you've been diagnosed with an acoustic neuroma, I'm glad you found us. You seem to have the surgery question well in hand.
I'm SSD so I know the situation can be problematic. However, I'm retired so I can't offer any advice about dealing with it at work but I'm sure others will be responding to you, soon, with answers. I can tell you that, post-surgery, there is the option of a BAHA (Bone Anchored Hearing Aide). Some of our members are very well informed on that subject and will be happy to educate you. I'm sure you'll find the information useful. As an SSD person that doesn't use a BAHA I know that positioning body to use your 'good' ear is crucial but in some cases, especially noisy environments i. e. restaurants, you just won't be able to hear very well. That is the reality of SSD. It is also why many SSD people, especially those working in offices, etc, decide to obtain a BAHA. You may be one of them. That aside, please keep us updated as you approach your surgery (in February). We're here to inform, encourage and support you in whatever way we can. Please check in as often as you can. Thanks. :)
Jim
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Kathleen Ann -
I became SSD as a result of my surgery and found it to be a huge hassle both at work and at home.
I discussed my misery with my neurotologist and he suggested a TransEar or a BAHA. I opted for the BAHA after trying a demo in his office and I've never been sorry.
Some say they learn to deal with being SSD and it doesn't really affect their lives. I was definitely not one of these people. I was completely miserable and actually depressed being SSD until I got my BAHA.
It's a decision I've never regretted and I do it again in a heartbeat.
BAHAs aren't for everyone, but I strongly encourage you to try the BAHA demo post op (once your head has healed). Look into the TransEar also. In my opinion, you are missing a lot if you go through life SSD without some type of assistance.
If you want to know more about BAHAs or the TransEar, search the Forum. There are numerous posts.
Don't hesitate to PM or email me if you have specific questions about the BAHA.
Best,
Jan
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Kathleen Ann,
I had my AN removed by Dr link in 2002. He does good work. I have been SSD since however. At work it was definitely an adjustment but far from ijnsurmountable. I work 95% in an office environment wiht a lot of meetings and a lot of face to face interaction. I always arrive at meetings early to place myself so I can hear best. I am so consistent with myseating now one ever claims my regular seat even if I am late.
I also avoid noisy situations as much as possible. I think this would be a real issue if I worked in a warehouse, factory, or some such workplace. I attend a few conferences each year and miss a lot of the discussions that go on in the halls between breakout sessions and such but deal with that as I need.
I have no hearing aid or any device as I never felt the need for one. Hope I am not missing out on something.
With only 20% hearing in your one ear already, I would think you will notice less of a drastic change than a lot of people who go from good hearing to SSD. I won't make light of the change you will deal with but life is still good post AN.
Hope all goes well for you through this ordeal. I think you are in good hands at Mayo. Good luck and God bless!
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I work as a felony court prosecutor, so my hearing is essential at work. I opted for a Transear. Like Jan, I would encourage you to look into a BAHA, Transear, or other options. You have probably already adapted more than you realize.
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I am used to the SSD. Not that some days I don't get more aggravated with it, especially at work. My co-workers have adapted to my hearing pretty well. But some days I feel like I missed the entire meeting! I am a nurse, my job gets done, I do it well, so the loss of my hearing has not affected my performance..just aggravates me some days. I remind myself that I am so happy to be alive, and that this is the only side effect that I have....and then I move on and smile:)
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Archer -
I can't speak for those who wear a TransEar, but part of the beauty of the BAHA is that you no longer have to position yourself in a specific seat at work for a meeting - which is one of the things I love about it.
I went from always trying to sit at a place where I could hear everyone - which was not an easy task - to being able to sit anywhere I want to and being able to hear everyone in the room.
With my BAHA I can hear things on my "bad" side, which has made life much easier and much, much less frustrating for me, my colleagues, my coworkers, and most of all my children.
Before my BAHA I was tired of my kids talking on my "bad" side, and in the end just saying "Oh never mind!!!" and walking away. I missed a lot of crucial conversations with them.
Jan
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From what I have seen on the forum, patients who have full hearing before surgery and end up SSD usually have a hard time adjusting. This is understandable, because it such a shock for the brain.
I experienced gradual hearing loss over the course of a year. By the time of surgery, I had no useful hearing left (could still hear some tones though). I ended up SSD, but I can honestly say that it didn't bother me at all. I think I had already adjusted. I actually got rid of the "distorted" hearing feeling that I had before, which I found very bothersome. I teach large university classes, and I am frequently in committee meetings. The only time SSD bothers me is when someone tries to talk directly in my ear. My kids know not to do this :P
Bottom line, as with everything AN related, everyone is different. You can't really predict how you will feel afterwards. If you find that you can't cope with SSD, there are some very good options, as others have mentioned.
Marianna
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From what I have seen on the forum, patients who have full hearing before surgery and end up SSD usually have a hard time adjusting. This is understandable, because it such a shock for the brain.
I experienced gradual hearing loss over the course of a year. By the time of surgery, I had no useful hearing left (could still hear some tones though). I ended up SSD, but I can honestly say that it didn't bother me at all. I think I had already adjusted. I actually got rid of the "distorted" hearing feeling that I had before, which I found very bothersome. I teach large university classes, and I am frequently in committee meetings. The only time SSD bothers me is when someone tries to talk directly in my ear. My kids know not to do this :P
Bottom line, as with everything AN related, everyone is different. You can't really predict how you will feel afterwards. If you find that you can't cope with SSD, there are some very good options, as others have mentioned.
Marianna ~
Thank you for that astute observation.
Like you (and other AN patients) my hearing in the AN-affected ear had been compromised to the point of becoming effectively useless prior to my AN diagnosis and surgery. So, by the time of my surgery (Retrosigmoid) I had already adjusted (quite well) to being SSD. Hence, I didn't have a big problem with unilateral hearing. I will admit that at times I have to ask someone to repeat themselves or I simply don't hear something being said (this usually occurs in a noisy environment). However, this happens infrequently and if I need to be sure of what was said, I simply ask the person to repeat. My family is well aware of my hearing deficiency and like me, have adapted accordingly.
I agree that if one goes into AN surgery with perfect or even 'usable' hearing and comes out SSD, they'll have a big adjustment to make. Those of us who go in to AN surgery SSD and come out the same way, have no adjustment to make because we've already adapted. That is why folks like Jan couldn't tolerate the sudden loss of bi-lateral hearing, were grateful to obtain a BAHA and remain happy to have it. That is perfectly logical and I'm glad the BAHA exists for those who need it. Who knows? I may join them some day. Until such time, I'm content to adjust and adapt as necessary and to date, that has worked out quite well for me, as it apparently has for you (and others, I know). Another example of why AN experiences are almost never identical.
Jim
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Kathleen Ann,
I had Retri-Sigmoid surgery April 2011 and became SSD in my good ear. I work in a college bookstore and struggle each and every day. It's hard to hear the students, to hear on the phone and to respond to my bosses questions, when she isn't in front of me. I wear a hearing aid in my other ear which helps some but it doesn't help with the direction of sound. I am considering the BAHA. I'm not sure if it will help with the horrendous tinnitus. What type of work environment do you work in?
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OMG thanks for all the wonderful support and understanding. I work in a Hospital as a float secretary so I am in a different unit everday and sometimes different building. I ordered one of the deaf on the right side buttons to wear. I truly should be wearing it right now at work but I'm not quite ready. I plan on wearing it after my surgery. I can't afford to miss or not hear what someone says to me at work. I'm very conscious of people that might be around me talking and if I don't hear someone I track them down and ask for clarification. I was wondering if anyone else wears the buttons? I just can't imagine having to tell potentially hundreds of people in one day don't talk on my right side. I have 20% on the right side now and it will be hard to lose just that little.
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Hi Kathleen Ann .....
Adding my welcome to this forum!!
So glad you are aware of the modifications you need to do in your workplace. If you are recording patient data, I would have to assume it is quite important to have the correct information recorded.
Have you considered getting a bone-anchored hearing device (Oticon Medical Ponto Pro or one of the Cochlear types)? I love my Ponto for picking up the missing pieces of information from my deaf side. Others have had good results with CROS or Transear devices (non-surgically implanted types).
Since I knew I would be SSD after my last surgery, I had the Ponto abutment implanted at the same time. In my case, I am very glad I had both done at once. You may prefer to wait to see how much different SSD is from the 20% you have now.
Let us know if we can help in any other way.
Clarice
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I wear a hearing aid in my other ear which helps some but it doesn't help with the direction of sound. I am considering the BAHA. I'm not sure if it will help with the horrendous tinnitus. What type of work environment do you work in?
Christine -
BAHAs typically don't help with directionality - although some get the sensation that they do.
As for tinnitus - a BAHA implant has no affect on tinnitus. Won't make it better; won't make it worse; won't cause it to stop or start.
I was tinnitus-free prior to my BAHA implant and I'm still tinnitus-free to this day.
Jan
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some people with hearing loss that is aidable with a 'normal' hearing aid do find their tinnitus is less noticeable when they are using the aid. i don't know if this is the case with a baha/transear?
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After complications with surgery, I wasn't excited about a bone implant (all is well now, I just had some unexpected events during and immediately after surgery...April of this year), so I've tried a Phonak bicross hearing aid. That helps alot at work. Allows me to pick up sounds on my non-hearing side and process the sound with my good ear. I'm still open to bone-transmitted sound options, but this is helping in the meantime. I just wear my hair a bit over my ears, and no one has to know the devices are in there. I work with telephone and radio communications, so it was important to address the issue in some way. Hope all goes well for you.