At least after the MRI, I wasn’t left wondering about the unknown. A vascular tumor like a Glomus Tympanicum could be more authoritatively ruled out. My ear problem also wasn’t as simple as just blood, it was in fact a Cholesterol Granuloma – a rare and benign cyst. These are also found to occur at the tip of the petrous apex (the part of the skull next to the middle ear). In my case, the granuloma formed in my middle ear and is luckily more accessible. The cyst is an expanding mass filled with fluids, lipids, and cholesterol crystals (which is what gives off the characteristically bright T1 and T2 images). It’s likely I’ve had this granuloma for many years, but the root cause is hard to accurately determine due to the condition’s heterogeneous nature; however, my previous bouts with chronic ottis media is certainly a suspect.
I asked Doctor K to submit for me a second opinion with another ENT at a different location. Now on my third Doctor (who was thankfully genial and adept), I went to another follow up appointment to review the results of the MRI, and to discuss the surgery plan. Surgery was inevitable by this point, but the path was now fairly clear. A full tympanomastoidectomy was still an option, although I obviously preferred not to undergo such an invasive surgery. Due to the more viscous and liquid-like nature of a Cholesterol Granuloma, as opposed to being a solid vascular mass, utilizing a transcanal method to drain and evacuate was deemed not unreasonable. My eardrum would need to be cut and lifted up to allow access.
After the appointment, my surgery date was set. I had 2 more weeks to wait out, and I did my best to keep my mind off the subject. Ever since I first found out that there was something abnormal inside my ear, I sort of lived in limbo. I stayed off my bikes and refrained from physically strenuous activities. Essentially, I went through the day to day motions, while slowly seeking an answer to this problem. Now with a course of action in place, all I wanted was to get this over with and return to a normal life.
With surgery day upon me (01/24/12), I went into the hospital feeling decently in control. It wasn’t until I was fitted in the gown and laying on the table in the pre-op area that the anxiety started to build.
I had a delicate last-minute discussion with my Doctor/Surgeon to clarify the procedure, and then it was go time. A nurse buried an IV needle into my left arm and I was slowly pumped up with an impressive arsenal of drugs, from morphine to who knows what else. They wheeled me off into the operating room. The last thing I can remember was observing one of the large over hanging lights, and pondering a trivial detail (like where it was made, since it looked rather intricate) to myself. The next thing I knew, I woke up and felt like I hadn’t slept in years. The surgery was done, and I snoozed off for another hour in the holding area. I eventually got back home, took a Vicodin pill, and went back to bed.
The whole surgery experience was quite thorough, the hospital had a whole team of people with different responsibilities catering to me. I still need to go over the details of the surgery with my Doctor next week, but I know that a Myringotomy was also done with an ear tube to provide further ventilation. As for the day after surgery, I could really feel the side effects of the general anesthesia. I felt worn down and my neck and jaw muscles were very sore. I also had a sore throat from the Endotracheal breathing tube placed in me. My ear has moderate pain and pressure, but is otherwise manageable. Currently, I’m bumming it at home and taking it easy until I can recover more. I have to watch out for discharge from the ear and my hearing is muffled.
Although my problem wasn’t life-threatening or a huge deal in the scheme of things, it still underlines the importance of good health. A bump in the road like this can throw off your quality of life measurably. I am eager to put an end to this experience, and to continue life with healthier and more productive objectives for 2012.
Hello, How are your doing now? How are you feeling now? Are there no permanent side effects? I was so happy when I found your blog. My MRI returned with “probable” cholesterol granuloma, I’m a big guy but a chicken when it comes to medical terms like these. My symptoms are: discomfort at the back of my right ear, sensitive hearing on my right ear, headache below my eyebrow, right eyeslid feels like less muscle, my tongue started feeling a little numb, numbness also in my right face, it has crawled to the left forhead, little numbness on both hands and feet. I will keep on visiting your page. Wishing you wellw
Hi Louie, I am doing much better but I do have to keep an eye on it. I’ve had a little bloody discharge recently from that ear, which was scary.
Your symptoms are definitely much different than what I experienced. Best of luck to you and feel free to email me directly to talk more.
Did you have to shave your head? I have this & I wanted to know a little more about pre-op stuff & the recovery time. Thank you :)
Not for my particular surgery. For tympanomastoidectomies, it depends on how far your hair line grows towards your ear crease. I’ll have to go in for this surgery soon because my cholesterol granuloma came back. Recovery time for a tympanoplasty, like the one I had here initially, is one week. Good luck.
I too have a “cholesterol granuloma” of the Petrous apex bone . I know this blog is not recent but I would appreciate any input from all of you on having it removed . I have severe pain in my eyes and the right side of my head . Hearing loss and a chronic fullness feeling in my right ear. Where do I go to get this removed? Thanks
Hi Sharon, I’m sorry about what you’re going through. The CG I had was actually in the middle ear, so it was a different condition. However, I have read other procedures for petrous apex CGs like the “endoscopic nasal” approach. I would consult your local ENT doctor as what the best course of action is for you. I personally had my surgeries done at Kaiser and by my ENT. Best of luck to you.
Thank you for your reply . Too bad it wasn’t exactly the same . So far I’ve found one maybe two ENTs in the U.S. that remove a CG of the petrous apex. But thank you Eric
Hi Sharon.
I’ve gone through the same thing (CG in the petrous apex) and now 5 years post-op. I live in HK so can’t comment on docs/care in the US, but happy to offer other insights if you like.
Rgds,
Steve.
Hi Sharon, I just ran aground this. I have a CG in the apex petrous. I have seen nets, neurotologists, a neuro surgeon and going to a rhino doc tomorrow. The neuro wants me to have it removed by nasal surgical procedure. How did you have yours removed? Any advise or info on recovery would be helpful. Thanks!
I had the endoscopic approach done at froedert in millwaukee Wisconsin on 12-11-18.Its been 14 days so far so good.
Hi.
I have set up a facebook page for people who have suffered or are suffering from cholesterol granulomas. I have one myself and have set the page up as a support page. Of anybody would like to share their experiences please feel free to do so. The page is called
Cholesterol granuloma awareness
Thank you. Rhiannon
My husband has CG and he is currently in operating room as I write this… he has been in the operating room over 3 hours now….going on 4th hour… I am pretty confident that the doctor is the best in Houston for this type of surgery. But I am very nervous because it’s taking longer than I thought it would be…. Hope for the best.
Best of luck to your husband. My second surgery ended up being fairly long as well, but that is typical of a mastoidectomy.
Hi guys I have a ton of questions and hope that someone can help me. My 16 yr old son noticed 5 yrs ago that his hearing in his left ear wasnt right. So after audiologist, ent, and reg pediatrician visits it was decided that it was okay and sometimes hearing just goes.. Then a yr later his left eye started getting fuzzy and i noticed he was getting clumsy. Then I knew it was time to make more phone calls new drs and as of Friday we have learned that he has a CG on both sides in the petrous apex left is 2.0 cm and is completely blocking canal and right is 1.7 cm. I am going in to see ent tomorrow Im not sure of what to ask or what to do at this point. Im really scared for him. He is practically deaf in his left ear. They are supposed to fit him for a hearing aid next week. Because they too said that there was nothing really wrong finally MRI shows a different story. So any advise would be great. We live in KY and Im not sure that I trust drs here.:(
Hi Jody,
A petrous apex CG is a different type to the one experienced in the middle ear. During my searching for CG in general, I did come across institutions that specialized in a new surgery method for petrous apex CGs called the endoscopic endonasal approach.
The surgeon is able to access the petrous apex region through the nose canal, which seems quite clean and preferable. Perhaps you could look into this more or consult with the institutions and doctors that are more experienced with it? Regardless, I would definitely recommend getting a second or even third doctor’s insight.
Best of luck to you and your son.
thank you Eric. We had our first visit to Lexington with the chief surgeon, which I thought was interesting seeing that we were scheduled to see another doctor. I was told later who he was and that he was interested because this was a special case. WOW right? He said he would go through the ear and I said no you wont because like you I have done extensive research and know all about EEA. I am having a difficult time finding a close one. Since he has one on each side I have so many questions. Thank you so much for replying
Jody, have you had success in locating a doctor that can perform this surgery using the nasal passages? If he has had it performed how is he doing? I am going to have the same surgery for my CG.
I’ve had 2 surgeries for the same thing. My 1st surgery was Feb.5th, 2016. Dr went in drained the fluid and within a few months it came back. I had my 2nd surgery on Aug.29,2016. Dr put in a catheter with tubes to hopefully keep it drained. Well I’m now having the same problems and going a CT scan next week. This has truly been an emotional rollercoaster.
After the surgery described in this post, I had the fluid come back within a month. I ended up undergoing a second surgery that was a full mastoidectomy from the back of the ear. I feel that this is the only way to gain the necessary access to properly remove the CG.
Were your 2 surgeries both through the ear drum/tympanoplasties? If so, I would recommend pursuing a mastoidectomy and you should have more successful results.
Best of luck, I know the struggle you are facing and it is difficult to deal with… but there is a light at the end of the tunnel.
Hi I have just be told today following an MR and CT scan that I have CG of the temporal bone. Im in the UK and this is considered a very rare condition so being refered to a specialist unit at another hospital. I have already been warned that it is 99% certain it will require a mastoidectomy.
Watch this space I guess just waiting for my next appointment
Hi Sid, l was wondering how your CG diagnosis has gone. I live in the UK and my 16 year old daughter was diagnosed with CG on the left petrous apex and am still waiting for the hospital to confirm if is really a CG or anything else. Which hospital where you referred to. Which hospital did the first diagnosis? My daughter’s MRI scan results were out about a month ago, but the doc is still waiting for a second report to confirm the findings
Eric,
Thank you for an informative blog.
I was diagnosed with a GC last week here in Utah, after an initial MRI and subsequent head CT, Radiologist confirmed 2cm GC next to right inner ear, wearing away bone.
My initial symptom was vertigo, followed by facial weakness on right side (watering eye, drooping eyebrow, and weakness in lips).
Meeting with Neurosurgeon on Monday to discuss potential treatment(s) and reoccurrence issues.
While I have a number of questions ready, was there a specific question(s) that you wished you asked before your initial procedure?
Scott,
My 17 old son was just diagnosed with CG and we too live in Utah. I am curious to know who your doctor was.
Have you had surgery? If so, what surgical approach did they take? Has it been successful?
Just diagnosed with CG. Find this blog very helpful.
Eric hello
As part of the overall procedure & surgery at any stage have the docs thought to check the nature of the cyst ? If this is indeed benign ? or this kind of CG cyst is only benign?
thanks a lot !
Hi Eric
I have been diagnosed with a CG left Petrous Apex. It’s 13mm and my symptoms are mainly constant dizziness, facial swelling and blurred vision. I am from the Caribbean and may have to travel to the US for treatment as my ENT says he has never seen a case like this before. It’s now 2018…any recommendations for a good doctor in the US?
Thanks
Brenda
Hey there, I just visited my ENT doctor and as he cleaned out my left ear he tells me I have a CG. He is having me do a treatment called BOV. Some sort of purple fluid and then a powder. He plans to do this every 2 weeks to avoid surgery. I’m not finding any information on this method. He didn’t tell me much about it so I’m feeling nervous and he didn’t do an MRI or CT.
I’d appreciate any information on this method or as to why he isn’t doing g any imagining.