Saturday, August 18, 2012

Zapping a cholesteatoma

My lovely bandage
(right before it came off)
 As I wrote a few weeks ago, I found out recently that I had a tumor taking over my ear, called a cholesteatoma. My recurrent ear infections as a child probably set me up for this...and my cleft lip and palate predisposed me to the ear infections. It's a perfect storm.

The bottom line is this: it's a very good thing that I went to the doctor when I started suspecting something was going on in my ear. My hearing has been getting worse in my left ear for a few years now, and I would get it cleaned out when I went for my physicals. My guess is that those techniques, in addition to my home remedies for getting rid of the ear wax (like flushing with water and ear wax removal drops) probably made it worse. It appears that I must have had this thing growing in my ear for awhile now, and getting liquid inside of the ear only worsens it. Cholesteatomas are rare and difficult to diagnose by internists or family practice doctors. They are rarely seen by otoscopes, apparently.

The surgeon suggested I get a head CT so he could understand where to avoid and all that. A few days later a nurse from his office called me to say that my CT was "complicated." (Not that complicated word again...my mammography is also "complicated.") I wonder if they put that word in the radiology report at the imaging center. She said that they suspected I had a "fistula" or a "dehiscence" and they wanted a closer look with a MRI with contrast. So last Friday I had the MRI, my first ever--an hour long. I wouldn't say it was pleasant but it was easier than I thought it would be (no claustrophobia).

On Monday, my surgeon called me to explain the results. He told me that it looks like the bone between my ear and my brain is "thin or absent," leaving a "bare dura" (lining of the brain). Damn--that did not sound good. The radiologist thought that the brain was "herniating down," but the surgeon didn't think so. He told me that he'd seen MRIs be misleading (as have I, with Christopher's--another story). The plan was to proceed with surgery as scheduled, and hope that it wasn't too complicated.

Surgery was yesterday. I was very impressed with the Cornell Surgery Center, which does outpatient procedures. My surgeon was even early so he started a bit earlier than scheduled. Unfortunately, the radiologist was right. He gave Mike a report while I was in recovery. Apparently he described me as an "unusual lady." Well yes, I already knew that! My cholesteatoma was not just on the "attic" of my ear, but wrapped all through my ear in an unusual way. And after he removed it, he was surprised to see brain tissue (the "herniation" the radiologist identified). He said he planned to call the radiologist and congratulate her. I'm glad he can get so much professional satisfaction from my unusual head.

As I was coming to in recovery, I heard the surgeon tell Mike to "make sure she's sitting down" when he explains the next steps, so I knew it wasn't going to be good. I have to have neurosurgery in 6 to 12 weeks to do a bone graft between my ear and my brain. Otherwise, I could get meningitis or a brain abscess (the most severe dangers of cholesteatomas). Apparently I have to spend the night in the ICU because of the risk of brain bleeds. I'm not sure what else is involved. Initially, the surgeon told me that it would be a less delicate surgery than the cholesteatoma, but I gather it's much riskier. They will have to "push my brain back in" before doing the bone graft.

So now I not only have to have another ear surgery in 6 to 12 months (to rebuild the bones in my ear), but I have to have neurosurgery much sooner. I hope the recovery is not too difficult or long. The ICU part scares me.

As for the first surgery, I took my head bandage off this afternoon and am trying hard not to blow my nose or do any heavy lifting. My ear hurts. I'm on Percocet for the pain and have enough to last me until tomorrow night, so I hope that will do it.

Last night I did not sleep well at all, because I was trying to keep my head elevated and also wanted to take the pain meds every 4 hours to stay ahead of the pain.

Bottom line, I'm not happy about the brain surgery part...but I'm extremely thankful that this is getting corrected because it could have killed me (worst case scenario). Who knows how long it might have been put off? Even when I saw the initial ENT who diagnosed it, he didn't give me a real sense of urgency about it. (Not returning to that ENT, by the way, who did not adequately explain what a cholesteatoma was!)

I'm just trying to focus on the gratefulness part and be brave, even though it is not a fun prospect that lies ahead. And it's a good thing we're refinancing our house, because all these surgeries are not going to be cheap!

16 comments:

  1. Incredible story!! Wishing you the best and prayers for an uneventful surgery. My 13 year old daughter, who has autism, was diagnosed with bilateral cholesteatoma 1 year ago. She has had 4 surgeries so far. Right ear is doing well. Left ear still needs some work and there is some hearing loss. We are fortunate that there was no damage to the skull. Laura Kozlowski

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  2. Thanks for your comment, Laura. I've read that cholesteatomas are much, much harder to obliterate when children have them. I hope that your daughter's ears are okay!

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  3. Wow Marie, this article made it much more clear..Thank You ! I am so so so grateful, that this was found when it was, as the risks of what could have happened are way to frightening to think about. Thank God for his blessings. Love Laurie

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  4. My best friend has had two cholesteatoma surgeries over the last 25 years. He's doing okay now, and I'm glad you've pulled through the first phase of yours as well. I can sure imagine it's uncomfortable mentally as well as physically. Mike's right; you're quite the trooper!

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  5. So sorry that you have to go through all of this, Marie, but thank goodness it was found now rather than later.

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  6. What an informative post about your condition. Ditto Tami. We all already know how tough and strong you are!

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  7. This is why 2nd opinions are a good thing. So much more for you to endure, but you have many praying/pulling for you and 4 delightful men/boys at home that know you'll be your perky self soon and very soon. Hang in there Marie!

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  8. Hey, Unusual Lady, I hope you know there are lots of people thinking of you and praying for you. You've got the spirit to do this, which is perhaps the most important part. And you can use it for an excuse why I'm beating you at Words with Friends. --Carl

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  9. Thanks, all. I appreciate your support more than you can know!

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  10. I will be having one in 8 months time, I have to undergo an MRI scan, not a CT scan, do you think that may imply my situation could be a bit serious? I am 20 years old an have been having trouble with my ear for the past 3 years, but never as a baby or child, which is odd. how was your recovery? and did you suffer with any other problems after your initial surgery?

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    1. They are similar just depends what your doctor prefers I would think! I was 16 when I had my first surgery and had one every year since and I have had 2 different surgeons now, I had bled from my ear was completely deaf in my left ear my surgeon was worried which was scary because they are meant to be positive! But I am okay for now fingers crossed! Onto annual checkups :) I found recovery is easier each time! First time I found I couldn't sit up or lay down without supporting my head, it strained my head so much really sore! Was out of sport for 3 month but the next couple times I was fine after a week! But still talking it easy! My first surgery took 6 hours but the other two were only about 3 :) hope your ear is okay! The only problem I had after surgery was being really scared to go under water for the first time post op! Thought my head would fill up with water hahah but it doesn't :)

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  11. How are you now? We are just going through round 2 for my 11 yr old autistic lad. Such an evil disease!

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    1. I'm so sorry--it is a really hard medical issue to fix. I had another ear surgery in 2013, but since then I've been doing okay. Hope all goes well with your son!

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  12. What happens if you dont get the c toma removed i have one but im super scared..

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  13. Please don't be scared, you will probably have to have it removed unless it is so slow that it hardly grows. You will be OK and fingers crossed you'll love a c'toma free life after this.

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