2 years to get a DX; this was 20 years ago; I've had 3 C-Tomas; 4 ops
I was 35, perfectly healthy. I went to a BAD HMO doc in Pennsylvania. He said I had allergies. Not only did he wait 3 weeks to FINALLY put me on antibiotics; he turned me away from an E.R. the night I went w/severe pain! My eardrum was bursting. I later found out he violated my federal rights (I had insurance; he had the hospital send me home - he said he would see me in his office that following Monday. My ER visit was a Fri. night). When I saw him the following Monday. I was medicated. This is Dr. Neil Lesitsky; he practices in the Poconos - STAY AWAY from him!
For approximately 1.5 years I started complaining of weird sensations. I saw no less than 5 types of specialists, had numerous tests (CT scans, bone scans, the horrible test where you sit in a dark room and they spin you - I will NEVER do that one again!) - NOTHING showed up! The ONLY thing that was 'finally' seen, was that my hearing bones had deteriorated. My symptoms (I remember well) were: clogged ear, clogged feeling left cheek, face going to sleep like your foot does. I never had drainage.
1998 I was scheduled for surgery; the NY Surgeon was going in to repair hearing bones, so he thought. It would be a relatively short procedure. It WAS NOT! Five hours I was operated on. I never had the bones repaired. He spent ALL five hours removing a C-toma from my facial nerve! I came out with trigeminal neuralgia, no paralysis. I was BLESSED to have had who I believe was one of the BEST Neurotologists EVER! He is world renowned. I did not realize how wonderful he was until post-surgery; I did know beforehand he was rated a 'Top Doc' in NY. I also will NEVER forget when he saw me at follow-up. He put his hand on his heart and said 'never in my wildest dreams did I expect to find what I did'. His name is Dr. Mark Levenson. He operated in Manhattan, he is upstate now. Not sure if he still operates. He has an extremely informative website.
1998 - 2007 I was on Depakote (I believe) for trigeminal neuralgia in my face. Look that illness up! It is known to be one of the most painful human experiences! I had this because I had to have a C-toma removed from my 5th cranial facial nerve. A C-toma that went nearly 2 years before DX; it did so much damage!
I had my hearing bones repaired at Johns Hopkins in 2000 (ONLY because I hated the hospital Dr. Levenson was at, NOT him....he is a GOD:) ). The hospital IS as important as the Surgeon! Dr. John Carey operated. I had a 25% hearing loss in my left ear, as told to me when I had the audiology test completed. You cannot go wrong with any Neurotologist at Hopkins, and this is BY FAR the BEST hospital in AMERICA! They function like a well-oiled machine. Dr. Carey is thorough, kind, knowledgeable. I would recommend to anybody going to Hopkins!
I probably had no less than 6 'bad' ear infections EACH year, over the next 10 years. I was constantly on antibiotics! Of course my ears were checked annually for a return of the C-toma; it never returned - until 2010 (only I didn't discover this until 2012).
2007 - I was living and seeing a doctor in San Diego, CA. Something was said about the medicine I was on for my trigeminal neuralgia. I do not recall what was said; it was enough to want me off the drug. Honestly, I WILLED away the neuralgia - I DID. Yes, I believe the mind is very powerful!
2010 I fell on my face; I had stitches in my lip. Within two months I was in an E.R., I had gray colored discharge from my ear - it was GROSS! I followed-up w/a Morristown, NJ ENT. He said he thought my C-toma was back. I was definitely in denial! I was DX by Dr. Greg Fleming, a very smart Otolaryngologist.
2010-2012 I went about my life but was noticing more and more a clogged left ear. I was visiting my son in Indiana. I was quickly getting progressively sicker....I located a Neurotologist (I think about the ONLY one in Indianapolis, or in the entire state) in Indiana. Dr. Vincent Ostrowski, he is WONDERFUL. He DX (or I should say validated the findings of the Morristown, NJ ENT) my 2nd C-toma. I was not prepared for the (drastic) surgery he did. He knew I had chronic infections. He did a Canal Wall Down Tympanomastoidectomy. This surgery reduced my hearing from 75% to 50% loss (you lose a lot at 50% loss); on the plus side - I NEVER had an ear infection again! Taking the wall down, for me, was the BEST thing. Incidentally, Dr. O is a very compassionate, knowledgeable physician; I would recommend to anybody in the Indianapolis area. Loved him!
2016, during a routine visit (having had no symptoms) the VERY SAME ENT's practice in Morristown, NJ that DX me in 2010 - again told me they believed my C-toma had returned! Only it was pearl sized; looked like a pearl too and caught early. This was able to be seen with the naked eye because the canal wall was down. C-tomas rarely can hide under this condition. The doctor did a CT scan. Of course, he was right. This is a GREAT medical practice; but I did want surgery in Manhattan, my family was nearby to care for me. It was the first time in over 10 years I did not return to Hopkins (even for this routine visit; as I'd seen Dr. John Carey over 10 years). Baltimore, was too far to be from family. Dr. Fleming's partner, Dr. Didier Perone DX this C-toma ....interestingly my last 2 C-tomas were BOTH DX at the same NJ practice....I love Dr. Perone too! A wonderfully, kind physician.
December 2016 I had my 3rd C-toma removed; it was my 4th (left) ear surgery. This was performed at Weill Cornell by Dr. Samuel Selesnick (excellent Neurotologist, excellent hospital). Definitely, would recommend him; he takes a lot of time with his patients. In the grand scheme of my 'story' his surgery was least invasive; so I cannot compare him to the work of Dr. Levenson, or even Dr. Ostrowski. He is at Weill Cornell, a TOP DOC - I have no doubt he can handle it all!
My hearing has been progressively worsening from 2014 through 2017. I developed sensorineural hearing loss; I have trouble with consonants, my right ear (no C-toma there ever). This may be due to an endocrine issue (sigh). I have desperately wanted hearing aids. I am a candidate for a BAHA implant, left side. I don't want this! October 2017 I got ReSound Linx 3D hearing aids. They're great! However, after one week I have either a cold (which I never get) or extreme fluid/congestion backup from the (L) aid; it is in both ears now, my sinuses, chest....I've gone 3 days w/o the aids. I will retry when the congestion clears. If it occurs again I will not be able to use these (at least the left one). The Audiologist and I discussed this prior to her ordering them. A problem would not be a total surprise as the ear needs to remain well ventilated. Sad.
I hope my story helps anybody who may have ready it. Feel free to ask me any questions you may have. I think I'm an 'expert patient' on this dreadful disease.
Find people with Cholesteatoma through the map. Connect with them and share experiences. Join the Cholesteatoma community.
Related books