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Author Topic: My story after surgery-- 29/male/boston/Dr.Vernick, with daily updates  (Read 11603 times)
boston
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« on: August 22, 2012, 07:30:27 PM »

Finally it's my term to post my experience, I read many horror stories at this place and I hope my story/thoughts can give bit of positivity air to ctoma patients, my overall experience dealing with cholesteatoma has been fine so far, but I still have long way to go..

First of all, I did significant research on this topic after I am diagnosed, I think everyone should do the same---educate yourself first, have good idea of the cause and treatment options, and use them communicate with otolaryngologist, so that they can speak with you about this easier and they know that you care about your issue seriously.  We are fortunate that we can obtain all the information on computer nowadays, instead of having to go a library to study.

This is a nice read:
http://www.dbi.udel.edu/MichaelTeixidoMD/pdfs/Cholesteatoma.pdf

Cholesteatoma is an annoying complication a person could have, it's not fatal in short time frame yet over long time it could grow&spread makes it hard to control (re-occurrences) and bring serious issue when it spread to the skull.  If you have it, you may have to deal with it for the rest of your life, so be sure to study it really well.

OK my situation:
Ethnicity: Asian (chinese)
29 years old, male, live in Boston, MA, USA

My case is bit unusual, the ctoma has probably been growing for at least 10 years. My left ear's hearing is always very weak (maximum conductive hearing lost) for a long long time.  It has been so long that I just thought I was born with it, there was no discomfort, no fluid, no pain.  And my eustachian tube doesn't work well, or could be total dead, my ears always hurt when taking flights, and I couldn't dive deep in water. And of course eustachian tube performance is closely related to causing ctoma.

Last summer after I flew to China with a cold (big red flag), my left middle ear had an infection, it was very uncomfortable and my otolaryngologist used a long needle for a puncture and drained the fluid (in the US myringotomy will be the standard practice but in China it's different), and that was THE WORST PAIN I have experienced in my whole life.  Right after the fluid draining my hearing resumed! It was quite an amazing experience, it's like removing an ear-plug that's been in your ear for 10 years.  Everything was different, at first things were bit too loud around me  Cheesy  It was a great time, until after a week or so, my eardrum healed and I started to feel there is fluid build up again in my middle ear.  I could tilt my head to have hearing weakened and resumed.  It was very obvious to me the fluid was getting more and more, it got harder to resume hearing by tilting my head, and eventually my hearing went back to the weak state---I knew my middle ear is full with fluid again.  But at least I understand what's causing it now.

After I came back to the states, opened up my insurance in-network doctor page, and picked the best doctor I could find. (I thought this is an extremely extremely extremely important step, you are finding people to fix a tricky problem in your body, shouldn't try your best to find the best person to do it?).  I ended up choosing Dr. Vernick, if you search "Vernick" in this forum you could see him mentioned few times too.  And you can look him up on google easily. He went to Johns Hopkins which is the best med school and currently professor at Harvard Medical School, see the picture yet?  He finished his education in the late 70s therefore very experienced. I have asked him how many cholesteatoma does he treat he said he operate on ctoma 30-40 times per year, and to me that's the sign that he is the one to go with.

Now of course that doesn't make all John Hopkins / Harvard doctors the best, nor doesn't make the others one bad, my point is that you should spend some effort picking up the best doctors in your area, instead of just going to the nearest random one.

After 3-4 sessions meeting with him (did myringotomy, took CAT scan, ask him a million questions, he is a VERY nice guy by the way), I finally decided to do the surgery. He thinks it's better to go with the "canal wall down" approach, which means only needs one surgery and no need for a "second-look", there are pros and cons to wall up and wall down, they are very different operations and one should discuss and choose the one fits your situation. Don't understand them? What did I tell you---do some research!!  (PS: many people suffer from re-occurrences, and canal wall down method is known for much lower re-occurrence rate, I believe the number Dr. Vernick gave me was 90% it will not grow back in your life time)

I have never had surgery this big nor had been general anesthesia, therefore was somewhat hesitated to do this thing.  I told him I want it done ASAP before fall semester starts (I'm a grad student), I was lucky able to schedule my surgery to a day only one week after I decided. It was even bit too rushy for me, felt like I would preferred more mental preparation time Cheesy

The whole surgery experience is smooth and positive. Surgery was done at Beth Israel Hospital, went there 4 days before the surgery for a pre-operation appointment.  The surgery took 4 hours and of course I was put under during that time.  I was bit surprised how comfortable I was after the surgery---few minutes after I woke up, I was able to walk to bathroom to pee, and was discharged 2 hours later.  As I'm writing this right now, it's been 10 hours after the surgery. I feel totally fine, they say I can not lift anything above 10 lbs but I feel like I can lift a 50 lbs bag easy LOL.  The pain is very minimal, it's past last pain pill (Percocet) duration and I don't feel like the need to take another one, on scale of 1-10 (10 being worst) I'd say it's 2

I was bit disappointed didn't get to talk to Dr. Vernick after I woke up, but I guess that's normal if the surgery went well (?).  I send him a message on his website and he called me back which was really nice.  He said it went well, removed the ctoma which was in the size "between a pea and cherry", but damaged the hearing bone a little--I hope my bone can heal well to not losing much hearing!

So here it is, it is 2012-08-22 21:27PM now. I will surely post here again later, I have to stay home for one week anyways!

I hope my experience can ease the anxiety some fellow ctomers. It is not a pleasant thing, but if you study it well, understand the situation well, have the right expectations, just treat it objectively and hope for the best.

Cheers!
« Last Edit: August 23, 2012, 07:47:56 AM by boston » Logged
boston
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« Reply #1 on: August 23, 2012, 07:56:48 AM »

ok it is 2012-08-23 10AM one day after the surgery now.

I did not sleep well last night mainly because I had to sleep face up with the wraps over my head, which is not my usual sleeping position, and worried if i roll over would damage the wrap/ear.

However I did not take any pain killers, I really didn't feel the need to take it.   It is 17 hours after my last Percocet so the medication effect has surely gone away, I am still amazed at how little pain I'm having, right now in the scale of 1-10 (10 being worst) I'm still at like 2.  And no i do not have any nausea nor dizziness. I could tilt my head well and lying down flat is no problem either...

It is less pain than tooth removal from dentist... it's pretty amazing considering he removed my canal wall skin, enlarged it, drilled away some temporal bone, restructured eardrum, and did skin crafting on my arm... only with this little pain... thanks and good job Dr. Vernick!
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boston
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« Reply #2 on: August 24, 2012, 09:25:58 AM »

Day 2 after surgery:

Had a GREAT sleep last night! Slept from 9PM to 8AM this morning, i was soooo tired because didn't sleep well the first night after surgery

Still feeling similar---not much pain 2 out of 10 still, did not take any more pain killer,  but been on antibiotics

the wraps around my head is causing most of the discomfort now, they are quite tight,  and the region the wrap touches my neck is itchy!! 

I was able to go out for a walk yesterday afternoon,  and went out for breakfast this morning.  Look forward to the one week check up
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boston
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« Reply #3 on: August 25, 2012, 04:20:24 PM »

Day 3 after surgery:

Had another good sleep last night, the pain in my ear seem to get worse a bit, probably at 3 out of 10 now.

There is occasional "shooting pain" deep in my ear, felt like something pokes my eardrum really hard.  it is bit irregular which makes it bit annoying

but I'm otherwise eating and resting well, so no complains Smiley
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boston
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« Reply #4 on: August 26, 2012, 05:49:55 PM »

Day 4 after surgery:


Two things is quite different today:
1. the shooting pain!  it seem to gotten worse and happens at random times,  and I finally decided to take one pain killer

2. ear getting itchy now!  I guess it's a good thing, means the cut is healing, but the itchyness below the thick wrapping is quite annoying!
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boston
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« Reply #5 on: September 12, 2012, 06:16:27 AM »

ok... it's been a while but here i come for an update, it's been 3 weeks after the surgery now:

the wrap around my head and padding in my ear has been removed.  doc says my ear is healing up nicely.
My hearing is perfect now! i'm happy that the surgery did not damage my hearing in any way, if any, it improved it.

i could take showers now but doc suggests to put a cotton ball with Vaseline oil to prevent water going in.

there is no consistent pain, but the occasional shooting pain do come,  and they seem to be more intense and less frequent now,  and believe me that is not pleasant when it happens!!  few times i had to stop working because it really shocked me

there is occasional drainage from my ear,  i'm not sure whether it's from the skin healing or it's same drainage like before from my middle ear,  will have to ask my doc next time i see him

that's pretty much it...  i've been resumed to work, and quite regular lifestyle with exception of not lifting heavy stuff,  so i'd say.... all in all everything been great so far!
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boston
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« Reply #6 on: October 15, 2012, 07:52:57 PM »

NEARLY 2 months after surgery!

Just saw Dr.Vernick few days ago, he is very happy with my recovery status, and will see me again next month

I no longer have any shooting pain (can not remember when was last time I had shooting pain)  Cheesy
I am very happy that the shooting paint stopped faster than I anticipated, I believe Dr.Vernick once said it could take up to 6month to a year to fully recover, I am not fully recover yet, but I have resumed all daily activities (except can not swim of course) with no problem!

I can not use my pinkie finger to reach inside my operated ear and clean it myself (although doctor said it's not recommended, but I still want to do it)

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