11/2 year check up after cholesteatoma & cholesterol granuloma removal

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Hello All,

This would be my first or second post and I apologize for the length. But wanted to give good news, give my experience to help with some of the questions recently posted, and tell my story. I also wanted to say thank you to this group! When I needed answers, this was the one place I could find the information. So thanks to everyone who posts! I will also say if you feel something is going on or get any mention of a cholesteatoma - don't stop until you get answers, get 2nd opinions if needed, do what it takes to take care of yourself! Also, know that although serious there is help and hope!

I had a great follow-up today after a year and half, my surgery was August 14, 2009. My surgery was to my right ear and included; removal of an attic cholesteatoma, a cholesterol granuloma which had caused damage to my sigmoid plate, removal of scelorsis on my hearing bones, tympoplasty using facia, and CWD modified mastoidectomy. I have no regrowth, both ear drums have scarring but that is to be expected based on my history. My hearing has improved in my right ear from 90% loss to about 20-40% loss. I do have to go every 6 months for check-ups now.

Dorothy-I was 37 almost 38 when I had my surgery. It took me about 3 weeks to get back to work. I was feeling better after about 2 weeks and moving around the house as often as possible did help. My son was 6 at the time and he stayed with his dad for 3 days (day of surgery and 2 days following). If you don't have the support of a church or friends, fix some stuff you can freeze or refrigerate before surgery to make it easier to care for yourself and son. I didn't do much bending over or lift anything heavy (although I did vacuum the day after surgery in my room-I was still doped up and wanted it cleaned before got into bed-LOL . Of course, I also tried to clean-up after myself when I threw-up in the hospital only a few hours after surgery).

Swimming question-My doc said no swimming for 6 months and then with ear plugs. I had to wear ear plugs and an ear cover (available at the beauty supply store) for 3 months after surgery when showering.

I also had no drainage prior to the discovery of the cholesteatoma.

I did have the taste or lack of taste issue and kind of pain/numbness on my surgery ear for a few months. In fact, I still don't sleep for long periods of time on my right side as it is uncomfortable (not painful -just weird and uncomfortable). I occassionally have pain behind, around, and above my ear when the barometric pressure changes but nothing like the pain and migraines I had prior to surgery.

Below is my story it is long but if you read it you'll understand that I went a long time without knowing what was wrong with me other than I had really bad ears.

I've had ear infections all my life. My eardrum burst with bleeding for the first time when I was 4 years old. My ear canals go up at a sharp angle - so tubes would not have helped me. I had a tympoplasty on both eardrums at age 9. I had a dry patch to help repair another hole in my late teens on my right ear. In my early twenties, I had major mucus-type drainage from both ears. In my mid-twenties, I moved to the coast for 6 months and it appeared my ear infections stopped or at least any drainage and/or pain stopped. I was always treated with antibotics - oral and ear drops.

Skip to 2005 mid-thirties and my infections started again, I got at least two cases of vertigo. Then my fingers, toes, and part of my face starting going numb in 2006. I had strange pains in my leg. My regular doc sent me to orthopedic specialist, who then sent me to a neurologist. After several tests, and many visits he ordered a MRI. He told me quote "your MRI is clear" told me I had migraines, I knew that but blamed my migraines for the other symptoms as well. I stopped seeing him and got my migraine meds from my regular dr.

Skip to 2009 my severe ear infections (note no drainage) came back and my co-workers suggested I go back to see an ENT not just my regular dr. My hearing test revealed 90% loss in my right ear, large hole in my ear drum, upon further examination the ENT told me I had sclerosis and perhaps a cholesteatoma. She then suggested I get a hearing aid. When I asked about the other stuff, she said you "may" have a cholesteatoma but probably not due to the sharp angle of my canals she couldn't tell for sure. You can see a specialist, a neurotologist to find out about the option of surgery if I didn't want a hearing aid. It wasn't that I "didn't want an hearing aid" it was I wanted to know what the heck was going on! She made the appointment for 6 months out to a specialist in Chapel Hill, NC about 2 hour drive from my home. After looking up and finding out what a cholesteatoma was 6 months didn't seem right. So, I called and told them what she thought and didn't I need to see them sooner. They agreed and said I would get a CT the day of my visit. But they didn't do the CT, said they would do it on my next visit. The neurotologist said he could scrape the sclerosis, fix the "smoking big hole" in my eardrum. Again based on what I had seen on this site, I decided I needed to know if I did or didn't have a cholesteatoma. So I called another ENT in my area told them all the information and my history and he sent me for a CT the day of my visit in June. I picked-up a copy of my CT results to take to my 2nd visit in Chapel Hill as soon as it was available. I was shocked at the accompanying report.

The report mentioned my 2006 MRI - which was supposed to be "clear". It said "evidence of chronic mastoiditis, sclerosis, and obliteration of the mastoid cells. Oval shape lunancy...which corresponds with hyperintense signal...as noted in previous MRI. ...loss of sigmoid plate adjacent to sigmoid sinus along posterior portion of this oval shaped density...a smaller lucency noted including a small dehiscence near the wall of EAC....based on appearance...dehiscence of sigmoid plate, the possiblity of an acquired cholesteatoma in the mastoid region should be considered....chronic...secretions considered less likely based upon bony changes noted above." WOW!!!!!!! This discovery made me get a copy of the MRI from 2006. It said "evidence of infarct or hemmorhage, chronic mastoiditis....hyperintense signals, blah, blah." That is not a "clear MRI"! The neurotologist wasn't sure from reading both the CT and MRI; he said I did have a cholesteatoma, but wasn't sure if the other spot was a veinous lake or a cholesterol granuloma. He ordered an MRA for two days after my visit, which after reviewing decided it was most likely the granuloma. (granuloma is very similar to cholesteatoma, both are benign "tumors" or cysts that can be destructive thus removal is recommended).

All of this information speeded up the process so from CT in June to surgery in August. My surgery would have been in July but the neuro had scheduled time off.....he was head of the dept and best pick since my ENT at home said he could not do the surgery...so I waited until August. My granuloma was putting so much pressure on my sigmoid sinus that it "exploded" when they went to excise it....they believe this pressure was causing my migraines.

All this to a good report today, thought my story may help someone else.