OT: Anyone experience with cholesteatoma removal? UPDATED: SURGERY SUCCESSFUL!!

[Val]

My DD9 is HOH and has progressive bilateral hearing loss since at least age 5. Our original ENT retired 'early' right after DDs tube placement in March of 04. The other ENTs in the practice refused to take on her patients, and one did a quick look/see after surgery, said all was fine, and showed us the door. Our audiologist has thought for over 2 years that something was not right, but we couldn't get the HMO to allow us to see an ENT outside the practice. Now a new ENT in a different practice has joined the HMO- and we saw him today. He spent 5 minutes reading her history, did a quick look in each year and diagnosed her with holes in both eardrums, badly placed tubes that were pressing on the ossicles and a huge cholesteatoma in her left ear. Said it was extraordinarily obvious what the problem was and questioned why nothing had been done for years.....wanted to do surgery immediately, except the infections in her sinus were too bad (he thinks caused by drainage from the ears!). We need a week of steriods and antibiotics and then surgery on the 5th. Can go through the ear canal on the right ear for new eardrum, but will do the invasive through the bone procedure for the left ear to remove the mass.

Anyone with any experience with this surgery? How was the recovery, and how much hearing did you have left. What I am reading on medline, etc., is potentially really scary. IS it that bad, or am I over reacting?

(and don't mention malpractice- right now i am thinking more like homicide given all DD has been through.....we will wait to see the outcome of this surgery before we start down that road!).

 

[HopperFan]

DS had this surgery @ four years ago. Took monthes to find but only because his ear canal was so swollen you couldn't see and the doctor wasn't the greatest. I ended up at my neurosurgeon for help, and he directed us from there. (Did you have CT scan done to see it all ? ) As doctor showed me, even a lay person (me) could see the tumor once swelling was gone. It shows a pearly white behind eardrum. Basically it is a big skin ball actively growing, from cells that got through the hole in the eardrum. Performed by a Neotologist, brain and ear specialist. Cholesteatoma had eaten two of the hearing bones so it was either be deaf or put in a prosthetic hearing device. Since he had one bone left, they put in a PORP, partial. It works, but not sure if it is distorting sound. He developed many sound senory issues afterwards. But I would still do it again rather than lose all hearing. Many have this done in two surgical procedures, first take out tumor and then put in prosthetic, but we decided to try it at the same time, nothing to lose if it didn't work. They removed the ear and in through canal. No bone invasion needed. If they are going through the bone, are they saying the tumor is already in the mastoid bone cavities ??? We found out my DS mastoid is solid instead of the normal honeycomb style so no invasion. It is important to get it all out so if it is in the bone, they maybe removing bone. His eardrum was rebuilt using cartilage from above the ear. They said he could return to school in 3 weeks or so, but I kept him out a couple monthes. I was concerned with noise and infection at school. The surgery itself is difficult for them to see given the small space they are working in. Leave behind a couple cells and it could start all over again. If they are going into the mastoid bone then it is goes to the next level. Ask about her hearing bones, and replacement if the tumor has eaten them. I know several adults who had surgery number one, and opted to remain hearing impaired then have any further surgery. Also they had bone removed, so that ear canal is alittle larger than the other.....but I would never have recognized it if they didn't tell me. On my son, you can barely see where they removed the ear because they cut behind it and not the front. Hope I have helped and not scared you....any other questions let me know or PM me.

 

[Talking Hands]

Husband just had this surgery 2 weeks ago Tuesday. Was back at work on Friday with just Tylenol Arthritis for a pain killer. Completely off pain killers now. What is bugging him most is the packing in the ear.
As far as usable hearing to understand speech, he has none although he can hear some noise. The surgeon couldnot place the prosthesis because of the amount of damage to the middle ear. It is possible they will do reconstructive surgery in a year.
Fortunately his right ear is fine so he is only half deaf. His Dad on the other had also had this surgery and is now deaf but he is 81 and stubborn and refuses to get aids or learn to sign.

 

[Val]

Thanks for the answers! DD has another audio eval on Thursday to establish current baseline, and they will apparently do the head CT on Tuesday before surgery so the doctor has a "most recent" picture. He is afraid there is ossicle damage, and given the "size" of the growth he wants to do it in two stages. Not sure if there is mastoid involvement, etc., either. I am beginning to come to grips with the fact she may not have much residual hearing in the left ear. Hopefully the eardrum repair in the right ear will keep that at mild loss.

Again, thanks for the supportive answers.....talking hands, you ALWAYS come through! Maybe you should be called 'miracle hands'! Hopperfan, how well does your son hear now? Any problems with the prosthetic ossicles?

Boy, I just wish it were next Wednesday. Anticipation is the worst!

 

[Forevryoung]

I'm currently a masters student at for Speech Language Pathology but I did my undergrad at the University of Maryland.

I can talk to my Audiology clinic here but better yet, I am still in contact with some of my Audiology professors from Maryland (one is at National Institute of Health for example). I dont have a problem emailing one for help if you need it. PM me if you have any specific questions-

 

[phillybeth]

DH had a c-toma removed 4 years ago. His was much larger than they thought from the CT scans and surgery took longer than expected. He lost 2 out of the 3 bones in the inner ear and has a reconstructed eardrum right on the remaining bone to transmit as much sound as possible. He had the 'wall down' procedure- I think that is what you are refering to by going through the bone.

The first few days were the roughest in terms of recovery, compounded by the fact that he had emergency hernia surgery just 6 weeks before his surgery for the c-toma. In terms of hearing loss, it can take 6-12 months for the swelling in the ear to subside to the point where hearing tests will be accurate. DH is right at the point where a hearing aid would help but is not required. He's not had any problems with vertigo or balance.

I know where you are coming from with the malpractice. DH was mis-managed for years by his ENTs. If it weren't for a work injury that sent to the emergency room with (temporary) hearing loss, we probably still wouldn't know about the c-toma.

 

[Talking Hands]

Jim's was also found by accident. He was right by a very loud alarm when it went off and suffered ear pain and hearing loss from that. I insisted he have it checked out and the doctors found that the ear drum was concave not flat or convex so they did a Cat scan and MRI. On doing the surgery they did find the C-toma was larger than expected and the more damage to the bones than expected. He was started to get vertigo just prior to the surgery but has not h husband had the reconstructive surgery?ad any since.
How long was it until your

 

[phillybeth]

Jim's was also found by accident. He was right by a very loud alarm when it went off and suffered ear pain and hearing loss from that. I insisted he have it checked out and the doctors found that the ear drum was concave not flat or convex so they did a Cat scan and MRI. On doing the surgery they did find the C-toma was larger than expected and the more damage to the bones than expected. He was started to get vertigo just prior to the surgery but has not h husband had the reconstructive surgery?ad any since.
How long was it until your

Exactly the same thing! DH accidently tripped a security alarm that went right off in his ear. It was about 6 months from the incident to his surgery- it was delayed due to his emergency surgery. He had the c-toma removal and the reconstruction done at the same time- although the doc said if he nknew the extent of the c-toma ahead of time he probably would have done the reconstruction later.

DH hasn't had any vertigo before or since.

 

[Ambassador]

One of our delegation had the surgery when he was two. He had numerous infections and fluid, had not yet gotten tubes, and when the ears finally drained the tumor was discovered. There are two types, of which his was less severe (acquired). The surgery went very well, as did the recovery. He has lingering speech problems, and ear exams every six months to check for regrowth.

 

[Talking Hands]

I don't think my husband has the acquired type as his father had surgery for the same thing in the same ear a number of years ago. Unfortunately for him it had already grown into the mastoid area and he no is deaf in that ear except for constant tinnitis. And now he has lost most of his hearing in his other ear so he is essentially deaf.
Fortunately for my husband, the accident happened and I insisted his hearing be checked.

 

[Val]

Surgery for DD9 is in the morning- at 8. Have to be there by 6:45.....new audio tests show another 20 dB loss and a "probable" cholesteatoma in the right ear, as well. Looks like left ear involves both ossicles and mastoid....only time will tell........

....I am a basket case tonight, but trying to hold it together for DD. Dr. says about 4 hours in surgery- so that gets her to recovery around noon and hopefully home by 4. Audi has prepared me for significant hearing loss in left ear, some more loss in right, but I am still hoping. Just want it OVER at this point. Have all my classes at the university covered for the week, have the laptop set up in the master bedroom so I can be next to DD all day (will put her in our bed).

So sad to see DD in tears after her swim meet- she said "goodbye" to the other kids and coaches for up to 12 weeks. Her lead coach gave us an exercise routine to keep her in shape- will start as soon as we get the all clear. DS turns 11 on Friday- kept his party on schedule as it isn't fair to ruin HIS bday....will take 8 boys to the local indoor golf/videogame place and then let them spend the night. My DH can handle them (I hope)....DD18 will be home from college on the 15th, and hopefully we will be recovered more by then. I will probably miss DDalmost15's Thursday night orchestra concert, but my DH will tape it for us. Too bad, I actually LIKE the high school orchestra concerts.

DD is such a trooper, and I am so proud of her. Can't believe this is her 5th surgery on her ears- and looks like we have several to go. Have to admit I am not looking forward to watching the Disney channel at 60-70dB all week, but will enjoy the time home with DD. Just wish is was under better circumstances.

Please keep us in your thoughts and prayers tomorrow.....thanks for all your support. We have no family where we live- they are all on the coasts, and it is nice to have a little extra support from the DIS family.

 

[Ambassador]

Our thoughts, hopes and prayers are with you, your daughter and family.

We recently saw this documentary movie http://www.imdb.com/title/tt0424509/ called 'Touch the Sound', which may interest and inspire you.

 

[Val]

We are home.....right ear looks good- new ear drum and all cleaned up. Left ear did have a large cholesteatoma, but the doctor thinks he saved most of the ossicles. NO mastoid bone involvement. The cholesteatoma was attached to the ear drum, and was growing through the tube- which made it appear larger than it was. She should have same or just slightly worse hearing in that ear and not the total loss we were fearing.

DD is SUCH a trooper. Her first IV blew and infused into her hand, so they had to start a second. Had a little rash develop to the tape and they had to take that off and replace it with paper tape. The anesthesiologist did give her anti-nausea medicine, so her tummy is hanging in there....her ear hurts, and she is on tylenol and codeine- she is a little groggy and loopy, but looks pretty good.

Thanks for all the thoughts and prayers....news is MUCH better than we feared. I guess that means I got my Christmas miracle! DD is home through Friday- so I guess it will be me, her and the Disney channel! Oboy- That's so Raven at about 80dB!!!!! But, I don't care HOW loud she wants the TV- she is okay and that is all I asked for.

 

[HopperFan]

WONDERFUL NEWS !!!

 

[Schmeck]

Thanks for updating and sharing the wonderful news! Hope you continue to have a very merry Chrismas season!

 

[Talking Hands]

Wonderful news. Glad to hear everything went well.

 

[Forevryoung]

Yay! I'm glad everything went well.

That's so Raven till Friday, Good Luck

Reminds me of when my sister was super sick (wound up being diagnosed with ulcerative colitis after months) and she would finally fall asleep to MTV. My mom didn't want to wake my sister so she didn't change the channel. Unfortunately, "The Newlyweds" (with Nick and Jessica!) played and replayed that spring so my mom heard whiney Jessica every day for nearly 3.5 weeks for hours and hours (and them my sister would state that she didn't see that episode)

My mom still gives my sister grief about it when the subject comes up

 

[phillybeth]

Wonderful news! I hope her recovery goes well!