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Author Topic: still looking for answers  (Read 6596 times)
almostdeafinkansas
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« on: February 13, 2011, 12:00:22 AM »

I'm new to the whole message board thing, but I thought I would atleast share my story along with reading others' stories. I'm 33 and I have had progressive hearing loss all my life. My "normal" doctor an ENT recently retired and there is no one in my immediate area so I did what any other guy would do...play off a little ear pain/discomfort and man it up. For 6 years. OK, I recently found out that that was one of the dumbest things I have ever done.
So here's my story. Last week I went to and ENT and he was concerned about something he saw, wrote me a prescription for Cipro-dex and see him in a week. Friday (yesturday) of the following week I was told that I have cholesteatoma in each ear and he wanted a CT scan done asap. I have one scheduled for monday and consultation on Tuesday. I have no idea what to expect but he did go over some of the precautions of what to expect but he didn't want to go into detail until he had a chance to look at the CT scan. So I am researching the condition myself and almost getting worried after reading some of the things I have read on here. So I guess I am just going to hope for the best and try not to get too over excited. I guess I just didn't realize how serious it was is all. Another thing he told me was I will have to have surgery and there is no way to avoid it. So I guess I am curious about what to expect after surgery? I live alone and I can find a ride to and from the hospital but am I going to be able to fend for myself? Dizzy afterwards? Will I be able to hear? You know things I might not think about? How about appetite? How soon could I go back to work? All questions I need to know but don't know who to ask besides the Doctor and he gets the luxury of saying see you in a week. So I am just here to ask and see if anyone has questions or advice. By the looks of things this is the place to be and ask for those type of things, hit me with your best shot.
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andrewscott87
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« Reply #1 on: February 16, 2011, 07:44:54 PM »

Surgery is pretty nuch the only option.
But its not that bad.
You will wake up groggy and be dizzy for a week or so. Pain can range from a little to a lot but you will get meds for that.
Hearing all depends on how far gone the c-toma is. And if its damaged any of the hearing bones.
Even so there are options like tympanoplasty which is where they fix your drum and so on.

I have had 2 ops on the same ear for a re-ocurring c-toma. First one went wrong (bad ent) second went really well.

I had a lot of pain but I was on the table for nearly 7 hours ( a few complications)

Complications for surgery are rare but the mains ones are.
If they hit the facial nerve one side of your face could be paralized.
Also menangitis. But that's really rare too.

Bug your ent to answer any questions you have. That's their job.



Andrew
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almostdeafinkansas
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« Reply #2 on: February 21, 2011, 04:22:07 PM »

Thanks, I go in for surgery on March 2nd. CT scan showed that it didn't look that bad such as eating away at the cranial bone structure, he also said it didn't look like it was around the hearing bones either but will find out more when he opens me up. I have had a tympanoplasy 13 years ago on the ear that is the most severe, but he says I will need surgery on both ears. I get approximatley 11 days off work to recover so hopefully I will be back to "normal" by then. Thanks for the info, now I just need to figure out if they are going to shave my head and if so how much, so I can shave the other side to match.
Aaron
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MaryC
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« Reply #3 on: March 10, 2011, 03:06:44 PM »

Aaron, how did your surgery go?  I'm scheduled for April 1st.  Embarrassed   and i'm soooo nervous!  MaryC
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almostdeafinkansas
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« Reply #4 on: March 13, 2011, 06:04:16 PM »

I'm not going to B.S. anybody here so I am just going to tell you how it is and what to expect. My surgery went fine was about 2.5 to 3 hours long. I went under about 1:30, and woke up in my room about 7 but groggy enough I wasn't fully functional to eat until about 8:30 or so then left at 9. First thing you need to think about is; does hydrocodone make you sick to your stomach? If it does TELL THE DR. so he/she can prescribe you something else. That was my biggest problem after the surgery, with inner ear surgery you are going to be slightly dizzy or nauseous, so if hydrocodone makes you sick then this can only get worse. Which is the contributing factor in my next problem, when I got home all I wanted to do was sleep but the pain was bad but not excruciating just very very uncomfortable!! So bad I couldn't sleep just because I was sick to my stomach from the pills. And it was this way for the first 2 nights until I called the Dr. and he prescribed me with Tylenol 3's which were much better on me. The area behind your ear is going to be very sore and try not to laugh or smile because it will hurt, the scar I had was right in the crease of my ear where it folds back onto your scalp, the scalp behind your ear is going to be sore as well because they are going to pull it back to gain access to the Mastoid bone. The whole area is going to be sore or tender to the touch for days. My doctor also removed a piece of the cartilage from the front of your ear (the flappy thing you might use to block noise out) He used it as a brace/block/build-up behind the eardrum since the Cholesteatoma was cut out you would have a divot so to speak, then the skin graft came from under my scalp used to cover the cartilage, if you clench your teeth and feel the muscle behind and above your ear, he cut it off of the top of the muscle tissue under the scalp, I don’t know why just said that is common. Also the muscle from your neck that kind of connects to the mastoid bone, it is going to be tight or tender as well, feels like he pulled it or stretched it a little. So don't be surprised if your neck is sore and you can't move it because it feels like it pulls from the mastoid. And the swelling will cause your jaw to be sore, so easy chewing food and not very wide open. You will or should have significant drainage, change cotton balls frequently as needed, going to look like straight blood for a few hours changing to clear eventually over a day or 2, if not tell the Dr.!
 One week after I am off the pain killers but get the occasional surge of pain here and there but you know your body take the time that you need to heal. The first 2 days were very rough, I wanted to get up and do things but was kind of sore and not really feeling like doing much. I wasn't very hungry but I managed to eat 1 very light meal a day. Sleep as much as you want as comfortable as you can, it’s not going to be very easy to sleep, might get 30 min here or there that stretches into maybe an hour or longer into a couple hours at a time. It’s more of a pain in the a@@ because you are tired but nothing is comfortable, a recliner might be best.  It gets better as time goes but if you have help they need to be the one cleaning the incision with a 50/50 mix of water and hydrogen peroxide and lather the incision with Neosporin, I HIGHLY RECOMMEND THE OINTMENT WITH PAIN KILLER, it’s going to be sore!!! And the more you laugh and smile it will feel like it is tearing a little but it’s not.  I do encourage trying to enjoy some friends/family with some moderate humor just be careful not to pull anything!! Your inner ear and outer ear are going to be filled with Neosporin so don’t be surprised if you can’t hear or is muffled. I just got my stitches taken out today and Dr. finally explained some of what he did and why I hurt where I hurt. He told me that he is leaving the ointment in for 6 more weeks then he will clean it out. I don’t recommend driving anywhere or even riding in the car anywhere stay around home but laying down sleeping seems to be best. I do recommend using stool softeners as soon as you can after the surgery, pain pills will stop you up. An ice pack or compress can help with some of the pain and swelling on your back side.  My ear (that protrudes) is mostly still numb dr. said that is normal as well. All this info is news to me, nobody told me any of this before I went in, there is nothing to worry about you will be fine and live to fight another  day but hopefully you read this before you do have your surgery so you can have an insight as what to expect after, and have a preparation plan for after, have cotton balls, Neosporin, hydrogen peroxide, q-tips, stool softeners, and whatever  you think you will want to eat, ice cream, bread, or soup I wouldn’t go much heavier than that for the first few days. You will slowly get jaw muscles back to eat bigger things and chew more.  I will tell you anything and everything else if you need other questions asked. My surgery did not remove the hearing bones so the Dr. is confident he will not have to re-do this ear. I will have to have surgery on the other ear in the future in probably a couple months and he said that one looks worse than this one. Oh well it MUST be done but now I know what to expect and hopefully I survive that one much better than this one.
Feel free to ask any questions you may have, I would be glad to answer them.
Aaron
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bassman_prog
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Posts: 8


« Reply #5 on: March 18, 2011, 09:34:16 AM »

Hi Aaron, my one question is with the last surgery you had where the doc didn't need to remove the ear bones, how was your hearing after the packing was out? I just had a similar surgery (a week ago) and my doc left the ear bones. I had the other ear operated on 7 1/2 months ago and I still have some degree of hearing loss in which I need to wear a temp hearing aid. In that case they had to put in a titanium prosthesis. But it's better than it was before. Just curious

kevin
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almostdeafinkansas
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Posts: 4


« Reply #6 on: March 18, 2011, 02:57:51 PM »

I have not had my packing removed yet, so I am unsure how my hearing is going to be, I'm alomost positive it will be better than it was before the surgery but it will still be a degrade in hearing. Or it just woudln't surprise me if I had hearing loss. My packing gets sucked out April 21st. Let me know if there are anymore questions or if someone wants to comment about their surgery and how it went and is progressing, I would love to read it.
Thanks,
Aaron
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bassman_prog
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Posts: 8


« Reply #7 on: March 21, 2011, 08:02:20 AM »

You must have had a slightly different surgery than I did. I only have wait two weeks to get the packing sucked out of my ear. For the first surgery it was two weeks and a day (due to scheduling) and the most recent one I get the packing removed one day shy of two weeks (again, due to scheduling). Sounds like you have to wait a month or more. My hearing was great before the surgery so I'm just hoping there isn't too much of a drop-off, because I'm getting tired of this temp hearing aid, and it makes me feel like I'm old.. I guess I'd rather look old than not be able to hear well. My Doc says my hearing should return much more quickly than the last surgery since he didn't have to put in a prosthesis. Hope all goes well for you.
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