Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Hello, my name is juli (new to this site). Anyways I never really asked "why me " and never got angry before the reconstructive-- but now 3years after my last sugery, I am mad! My ears hurt more now and I know its the weather, storms and pressure stuff like that, but the doctors just kind of blow me off. Sometimes it hurts so bad I can't function. Its like they vibrate (my ears), certian noise just sets them off. I have to take out my hearing aides so then I really can't hear and still in pain. Anyone else have that problem? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 ------------------------------------------------------------ writes: My current issues that I am trying to deal with.... I was told by the Dr that due to the fact that my hearing was so good now, I will undoubtedly suffer from a deteriation in hearing Reconstructive surgery after this would be pointless because my right ear runs at 110% of average, and will already be over compensation for the slight loss in my left (He explained it much better) Bitterness is my main issue. I must admit that am currently feeling quite bitter about things. I am perfectly well at the moment, suffer no pain, no dramatic loss of hearing, no balance issues etc, yet in one months time, I will go into surgery and come out with all of the above- It just doesn't seem right. I would appreciate any replies from people who have felt the same. ------------------------------------------------------------- Sometimes the cholesteatoma itself acts as a sound conductor, even when the hearing bones (ossicles) have been destroyed. After the c-toma is removed, the " bridge " is gone, thus the preop hearing level disappears. I'd still ask for reconstruction if you're not satisfied with your postop hearing level. After all, we need two ears to hear stereo sound. Also, it's very difficult to triangulate sound with only one hearing ear. That means associating the origin of a sound. For those who don't know what this means: Imagine your two ears are each one corner of a triangle, the source of the sound is the third. With only one hearing ear, it becomes very hard to hone in on on that " missing " triangle corner and our brains can't quite figure out where that area is. When I only had one hearing ear, I often imagined sounds coming from completely different directions from where they truly were. I'd hear something and it would sound like it was coming from in front of me. I'd then turn and discover that it would actually originate from behind and slightly to the right. If this is hard to understand, draw it out on a piece of paper with a ruler and three points, then with only two. Yes, it's totally normal to feel bitter and angry. This whole disease process bites. I mean, many of us don't really feel " sick enough " to go through life changing surgery. Anger is one of the steps to working through grief. I know I grieved about the loss of my preop body image. I went through the WHY ME? stage. Then I realized I didn't have a choice about some things on this life journey and I'd try to make the best of it, just like the rest of my personal setbacks. Don't get me wrong, I'm not Pollyanna-ish in the least. I knew that I'd learn from it and I'd get through it, just like everything else, in my own due time. Recognise anger, go ahead and be bitter, then get back up when it's right for you. Everyone works through difficulties in their own way. Finally, I got to WHY *NOT* ME? I decided to get something positive through this and I try to be here so the Newbies don't have to go through c-toma alone, like I did. Look hard at situations on the road ahead. Try to find little things each day that have positive meaning for you. Give positive feedback to a care giver who is very kind and caring toward you--that may help them take the extra step for someone else down the line. Be an advocate about c-toma. If you can help even one person who may be yet undiagnosed and unfamiliar with this Monster, you've done your job. You might influence another medical professional to be a cholesteatoma advocate if you educate them. If you keep someone from undergoing even the slightest bit of permanent damage to their ears or hearing in the future, you've gotten something very important from this. You'll find what works for you, just be open to it. Go ahead, vent. Whine, scream, cry, pout, stomp your feet, do angry art, play or make loud and crashing music, whatever makes you feel better without hurting someone else. Then, you'll move on when you're ready. We've ALL been where you are, or we're going to be. -- Diane Brunet http://www.sassysuds.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 I definely felt that way about my daighter. However,the more I am on this list I realize that it is very real that the chlestoma grows and can erode mastoid and get into brain. It is scary but it has been for me an acceptance issue. I value helath very much,mostly don ot have any dealings with tradtional medicine so this has een a huge adjustment. Actually,it has been a releif as she hasn't been able to hear since before age in her left ear/. There is posiiblity of more hearing but the main ojection is to remove the cholewstoma. Yes, it is pauinful. I had to let myself process this and still am to a degree. She had her first surgey Nov. 25. Sallie, mom to Kara with c-toma ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
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