Discussions By Condition: Medical Stories

Cholesteatoma from ***l

Posted In: Medical Stories 11 Replies
  • Posted By: Hole in the Head
  • April 20, 2007
  • 11:32 PM

Hello to all:

After having lived with my problem since it first became apparent to me the end of June 2003, I feel a need to share my experience with others.
I had ear problems from birth and had three operations, all of which were misdiagnosed at the time and the last one, at age 11 resulted in total deafness in my right ear and the canal being sealed off totally.

I am a 57 year-old ex-machinist who is on a disability due to chronic back pain.
I awoke one morning as I earlier stated, sometime in the end of June of 2003 and felt “different”. Trying to get out of bed I fell to the floor totally incapacitated by vertigo.
After several attempts, I managed to stand up and make my way rather wobbly to the bathroom. I also found I could not speak louder than a hoarse whisper.
I also at this time noticed a peculiar weakness in my right shoulder.
Thinking I had a stroke, thoughts of doom raced through my mind.
I had an appointment that very afternoon with an E.N.T. specialist and felt that he, being a doctor would know if it was a stroke or not.
Seeing me for only a few brief moments he re-assured me he felt it was not a stroke. He inserted the usual optical device up my nose to check out my vocal chords and found one side completely paralyzed. He also found my tongue to be pointing to the right side of my mouth when I stuck it out. Also he noticed a weakness in my right shoulder.
He said that this was a problem he could not handle and made an appointment for me to see a specialist at Sunnybrook and Women’s Hospital in Toronto.
This was during the SAARS outbreak at this very hospital and I assumed I would have a rather long wait to see anyone there. In the meantime I was sent for an MRI to take with me when I went. I was shocked when I was given an appointment for just 7 days later.
I was doubly shocked when the specialist there told me what the problem was and that it was the most severe case he had encountered to date.
I had a Cholesteatoma that had been allowed to grow undetected in my head ever since my last childhood surgery on my right ear when it was all sealed off. Therefore no visible discharge. Therefore no way to detect the problem all those years. Also, being sealed shut the discharge had nowhere to go but to form an increasingly larger Cholesteatoma.

This surgeon was about to leave on vacation but postponed it to operate on me because he said if left as is it was life threatening since it had grown so close to the brain and there was a great chance of meningitis if the disease mixed with the CSF that surrounds the brain. That first surgery took place July 22nd 2003 (I missed the Rolling Stones free SARRS concert). OH WELL!

The surgery went well and I left the hospital the very next day thinking all was well again. What followed was monthly visits to the specialist so he could drain off discharge still forming and sometimes this meant cutting a new window in the ear canal when the old one closed up due to scar tissue. I might add that the cutting was always performed without any anesthetic. The pain would be rather intense for just a few brief moments so I stoically endured.
Eventually he informed me that my last MRI showed more growth and a need for further surgery which took place May 12th 2006.
This time the surgeon went as far as he dare into the skull and feared he might have nicked the lining of the brain through the large hole the Cholesteatoma had eaten through the skull wall. This he sealed off with human glue and my stay in the hospital was a full week with very close monitoring.

Again came the return visits every month, sometimes more frequent, and in December of 2006 I was again informed I needed more surgery. This time he prefaced the report saying that things were totally out of control this time and I would need a very radical surgery involving removal of the mastoid and surrounding areas. I was informed I would in all likelihood be rendered paralyzed on my right side of my face, looking as if I suffered from Bell’s Palsy. He informed me that I would require an incision from behind the ear at the top, all the way around the back of it and down the neck, along and under the jawbone to a point almost an inch from my larynx.
He was careful to go over every option with me but the outcome was always that if I said no to the surgery that eventually the disease would kill me.

I went into that surgery January 12th 2007 fully aware of the consequences. He said I would be the only patient he saw that day and a full team would be working on me. The estimate was 8 hours. It took just over 13.
Four days post-op I had to be rushed back in for emergency surgery due to the fat tissue that had been harvested from my leg to fill voids turning necrotic as well as infection of the right temporal bone. They had Infectious disease Service evaluate me and they found not just one but three very persistent bugs involved.
What followed was a full week of IV injections of Vancomycin, Ciprofloxacin, and Flagyl. Anyone who has encountered Flagyl will know it is heavy-duty stuff indeed and quite ******n the veins as well.
Also at this time we began to realize that I was having great difficulty swallowing foods unless they were pureed. Assuming this was temporary I endured once again.

It is now mid April, a full three months after surgery and I still cannot eat solids well.
I have lost more than 48 pounds. Thank heavens I was overweight to begin with.
My right eye constantly tears. There is a gold weight to help the lid close.
I get an itchy tingly feeling in my throat that causes intense coughing fits at times and these are disastrous when they happen when trying to eat as I aspirate almost every time this happens. I am on a constant watch for the signs of pneumonia and during my last visit April 2nd, I was informed that the remaining Cholesteatoma that cannot be surgically removed is once again draining out of control. I have a nurse come in every second day and remove the packing that is stuffed in a new hole in the ear canal and it is beginning to look as though this could be a permanent situation for me.

So here I am not knowing what will come in the future.

Hole in the Head

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11 Replies:

  • Hey, just read your story. wow. It simply sucks doesn't it and there is little you can do but rely on an inexact science. Go see Dr. David Vernick in the Boston area, he fixed me up the last time I had my Cholesteatoma removed in 1999 and that surgery was more intense that the one I had in 1989 at 17 when the first one was removed. In 1999 at 27 yrs old he removed a good portion of my mastoid and widened my ear canal. (Knock on wood) I haven't had an ear infection since the surgery in 1999 but, it's been about 10 years - the average turn-around time for the Cholesteatoma to return sufficiently to be noticed again. I'm starting to notice pressure again. So, the routine starts. Go see the PCP, the local ENT specialist, get a CT scan, then referred to a more experienced ENT doctor. I suspect that my initial diagnosis's back when I was in the 7-10 year old range was not indepth enough to catch it, CT technology was relatively new and the condition is rare enough that the odds were against me anyway. Anyway, prior to surgery I was told about loosing my facial nerves as the tumor was growing around the facial nerve - didn't effect me there. Was never told to watch out for menigitis - figured that out on my own research on line. I feel for ya buddy. all we can do is hang in there and try to keep the monkey off our backs.
    Anonymous 42789 Replies
    • October 21, 2007
    • 11:54 AM
    • 0
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  • Just last month I called my surgeons office to tell him that I could once again notice that smelly discharge coming out of the ear. It is fortunate that he has chosen the Canal Wall dowm approach as it meant the discharge would be noticable so much sooner.Just 45 days prior to my phonecall I had a visit with him and all was well.No discharge, no smell and the cavity looked clean and pink.I left a message with his secretary and my call was returned within 1 1/2 hourI was informed I was scheduled for surgery in 5 days.I am blessed with a man who takes good care of me.He brought me in, opened the ear canal up VERY wide this time. The hole is the same size as the opening in the normal ear and it goes all the way back to the wall of the brain.So far, one month later there is no discharge, no smell, no problems to report.Since the Tumor has travelled so far into the cranial cavity and has wrapped itself around so much vital real estate, he cannot go in and take it out without causing some rather radical future problems, most likely leaving much worse off than having to deal with the inconvenince of periodic future tumor removal.I have home care nursing three times a week to remove the packing from the cavity and replaced with new soaked it Betadine.The betadine of course, being a bit caustic ensures that the wound will remain open and raw enough to promote good drainage.He has met with two plastic surgeons from NY to discuss further rehabilitive surgery aimed at repairing the total facial paralysis of the right side.One thing we are considering is a full cross face nerve transplantation where all the nerves of the good left side are also run over to the right side.I would then have a near perfectly balanced face.The fact that so much mis-diagnosis so early in my childhood has resulted in the reality I have to live with now is regretable and at times hard to deal with.It is so easy to be angry with physicians who simply " Did not know "What they were dealing with at that time yet my energy is much better spent doing everything in my power to manage my situation.My surgeon mentioned to me that he feels so bad that he was forced to remove the entire mastoid and nerve structure. He had went to all heroic measures by grafting nerve from my right leg to replace the facial nerves.Unfortunately when the post operative infection and resulting emergency surgery happened 4 days post-op, he feels that all chance of the nerve graft still remaining viable is zero due to there no longer being any tissue there for it to attach to and grow into.When your surgeon and all his staff call you by your first name and chat about your current affairs with you, then you know you have seen far too much of them but they have become like family and the support they offer is fantastic.He even has helped me find funding for a Bone Attached Hearing Aid ( BAHA UNIT ) from a competing doctor and hospital that has funding for 20 operations per year. This will save me aproximately $6000.00 for the hardware alone, money I can ill afford being on a disability pension.All in all, if I was asked to weight the problems against the benefits, I guess I can only say I am running about even so far.Thank you for your kind words of support. I have developed a very humble attitude about the help and support I recieve from my friends and people such as you who know and understand my situation so well.Take care and God BlessJim Surrette
    Anonymous 42789 Replies
    • October 22, 2007
    • 06:43 PM
    • 0
    Flag this Response
  • My son had an ear infection in his left ear for the first two years of his life. All doctors did was prescribe ear drops. Then went to Dr. Shah at CHOP and he put tubes in his ears. After 2 months insurance changed had to go somewhere else. More ear infections still, went to dr. in allentown and he perscribed more ear drops. I said thank you but never mind and he was affended. He asked me what I wanted him to do and I demanded a cat scan or MRI. It turns out he sent me across the street for a cat scan and called me that night and said my son had to go to Hershey Medical Center ASAP. They found a cholesteatoma cyst in his ear and if I would of not been as persistent as I was, my sons next symptoms would of been face paralizing. We seen Dr. Iaacson at Hershey and he did surgeries. My son is now 10 and has about 75% of his hearing back. We deal with stinky, brown discharge every other month or so and then we use ear drops. Not a lot of people are aware of such a cyst.
    Anonymous 42789 Replies
    • October 23, 2007
    • 00:56 PM
    • 0
    Flag this Response
  • i feel so bad for you -- the pain you have to endure -- my son (15months) has had earaches- on and off -- the docs keep prescribing antibiotics -- have seen 2 ENTs -- who make me feel like a mom who overeacts to everything -- but i knew this was not an ear infection - he is my 4th child - i think i can differentiate by now !!! anyways long story short - yesterday his pedi together with other drs. decided he has cholesteatoma and i have an appnt to see a new ENT next week -- i just think children should be sent for a CT scans periodically -especially if they dont know what going on -- instead of prescribing anibiotics and such ....
    Anonymous 42789 Replies
    • October 24, 2007
    • 07:22 PM
    • 0
    Flag this Response
  • Hole In The Head ... First I have to say that you, and your story, led to me decide to join and actively participate at this site. Though there are differences, your story holds many similarities to my continuing battle with cholesteatoma.I hope to have my story posted in the next few days. It’s a long, drawn-out account of what sometimes happens to people who have these tumors, especially when doctors who fail to look beyond the surface, the norm, surround us and refuse to seek to find these (sometimes hidden) destructive bone-eating monsters.I’ve fired many such doctors along the way … have found the best there is now ... in this country, anyway … I am a two-year sufferer of incessant subjective tinnitus. I lost my incus and malleus (on one side) to a massive cholesteatoma … had a modified radical mastoidectomy and tympanoplasty on that side in 2006. I lost my incus (on the other side) … had a modified radical atticotomy and tympanoplasty on that side in 2007.I now have recurrent bilateral cholesteatoma … no remaining ossicles are visible on either side. The games begin again …Back to stumbling around everywhere … spinning around (I have no love for vertigo) … food tasting rotted … severe bilateral deep stabbing ear pain … the headaches behind the eyes and down both sides of the skull …What a mess …I appreciate your post … can’t wait for you all to read what a journey I’ve been on for the past two years (since March 6, 2006) … I go to the surgeon this-week Wednesday (the 26th). Wonder what great news he’ll have to share with me …??? Think good thoughts ... (Good luck to you …
    dixied01 13 Replies Flag this Response
  • Blaze … … Sounds more like a ruptured tympanic membrane (eardrum) …As I say, I’m not a doctor … just a longtime sufferer of middle-to-inner ear disease and, more recently, bilateral cholesteatoma with cranial nerve involvement … Fortunately, I have a good surgeon up in Atlanta … One of the best, or so they say … Good luck to you ...
    dixied01 13 Replies Flag this Response
  • Blaze ... I really couldn't say if there is a connection between Lyme Disease and cholesteatoma ... I've not heard of one ... Worth looking into, though, I suppose ... Good luck to you ...
    dixied01 13 Replies Flag this Response
  • I too had a cholesteatoma from ***l. This site helped me through it all. Hope it helps some others:http://www.cholesteatoma.net
    jspittman 1 Replies Flag this Response
  • " ...... Fortunately, I have a good surgeon up in Atlanta … One of the best, or so they say … " Dixied01 - Would you be willing to share your surgeon's name? We're in Atlanta and a family member was just diagnosed with a Cholesteatoma needing immediate surgery
    Anonymous 42789 Replies
    • October 7, 2008
    • 09:25 PM
    • 0
    Flag this Response
  • Hello to all: After having lived with my problem since it first became apparent to me the end of June 2003, I feel a need to share my experience with others.I had ear problems from birth and had three operations, all of which were misdiagnosed at the time and the last one, at age 11 resulted in total deafness in my right ear and the canal being sealed off totally. I am a 57 year-old ex-machinist who is on a disability due to chronic back pain.I awoke one morning as I earlier stated, sometime in the end of June of 2003 and felt “different”. Trying to get out of bed I fell to the floor totally incapacitated by vertigo.After several attempts, I managed to stand up and make my way rather wobbly to the bathroom. I also found I could not speak louder than a hoarse whisper.I also at this time noticed a peculiar weakness in my right shoulder.Thinking I had a stroke, thoughts of doom raced through my mind.I had an appointment that very afternoon with an E.N.T. specialist and felt that he, being a doctor would know if it was a stroke or not.Seeing me for only a few brief moments he re-assured me he felt it was not a stroke. He inserted the usual optical device up my nose to check out my vocal chords and found one side completely paralyzed. He also found my tongue to be pointing to the right side of my mouth when I stuck it out. Also he noticed a weakness in my right shoulder.He said that this was a problem he could not handle and made an appointment for me to see a specialist at Sunnybrook and Women’s Hospital in Toronto.This was during the SAARS outbreak at this very hospital and I assumed I would have a rather long wait to see anyone there. In the meantime I was sent for an MRI to take with me when I went. I was shocked when I was given an appointment for just 7 days later.I was doubly shocked when the specialist there told me what the problem was and that it was the most severe case he had encountered to date. I had a Cholesteatoma that had been allowed to grow undetected in my head ever since my last childhood surgery on my right ear when it was all sealed off. Therefore no visible discharge. Therefore no way to detect the problem all those years. Also, being sealed shut the discharge had nowhere to go but to form an increasingly larger Cholesteatoma. This surgeon was about to leave on vacation but postponed it to operate on me because he said if left as is it was life threatening since it had grown so close to the brain and there was a great chance of meningitis if the disease mixed with the CSF that surrounds the brain. That first surgery took place July 22nd 2003 (I missed the Rolling Stones free SARRS concert). OH WELL! The surgery went well and I left the hospital the very next day thinking all was well again. What followed was monthly visits to the specialist so he could drain off discharge still forming and sometimes this meant cutting a new window in the ear canal when the old one closed up due to scar tissue. I might add that the cutting was always performed without any anesthetic. The pain would be rather intense for just a few brief moments so I stoically endured.Eventually he informed me that my last MRI showed more growth and a need for further surgery which took place May 12th 2006.This time the surgeon went as far as he dare into the skull and feared he might have nicked the lining of the brain through the large hole the Cholesteatoma had eaten through the skull wall. This he sealed off with human glue and my stay in the hospital was a full week with very close monitoring. Again came the return visits every month, sometimes more frequent, and in December of 2006 I was again informed I needed more surgery. This time he prefaced the report saying that things were totally out of control this time and I would need a very radical surgery involving removal of the mastoid and surrounding areas. I was informed I would in all likelihood be rendered paralyzed on my right side of my face, looking as if I suffered from Bell’s Palsy. He informed me that I would require an incision from behind the ear at the top, all the way around the back of it and down the neck, along and under the jawbone to a point almost an inch from my larynx.He was careful to go over every option with me but the outcome was always that if I said no to the surgery that eventually the disease would kill me. I went into that surgery January 12th 2007 fully aware of the consequences. He said I would be the only patient he saw that day and a full team would be working on me. The estimate was 8 hours. It took just over 13.Four days post-op I had to be rushed back in for emergency surgery due to the fat tissue that had been harvested from my leg to fill voids turning necrotic as well as infection of the right temporal bone. They had Infectious disease Service evaluate me and they found not just one but three very persistent bugs involved.What followed was a full week of IV injections of Vancomycin, Ciprofloxacin, and Flagyl. Anyone who has encountered Flagyl will know it is heavy-duty stuff indeed and quite ******n the veins as well.Also at this time we began to realize that I was having great difficulty swallowing foods unless they were pureed. Assuming this was temporary I endured once again. It is now mid April, a full three months after surgery and I still cannot eat solids well.I have lost more than 48 pounds. Thank heavens I was overweight to begin with.My right eye constantly tears. There is a gold weight to help the lid close.I get an itchy tingly feeling in my throat that causes intense coughing fits at times and these are disastrous when they happen when trying to eat as I aspirate almost every time this happens. I am on a constant watch for the signs of pneumonia and during my last visit April 2nd, I was informed that the remaining Cholesteatoma that cannot be surgically removed is once again draining out of control. I have a nurse come in every second day and remove the packing that is stuffed in a new hole in the ear canal and it is beginning to look as though this could be a permanent situation for me. So here I am not knowing what will come in the future. Hole in the Head Hole in the Head Wow, sounds horrific, some of the things you mention indicate your either Canadian or had treatment at Canadian facilities. I am beginning my journey and although I can not offer any advice to you I am hoping perhaps you or someone else can assist me. I live in Ontario and last January 2009 my right ear began to fade in and out and within a month was completely blocked with the feeling of swimmers ear. No discharge but over time that feeling of pressure is unreal. I had been given nasal spray for three months with no relief. My family Dr saw no water but I was persistant and was given a referal to an ENT. From there I had a CT scan, this took until Nov 26. I was just at my Dr's for the follow up app from the CT and this is what it read."There is a nonspecific fluid or soft tissue bearly completely filling the epitympanum, tympanic isthmus, mastoid antrum, with near complete opacification of the right sided mastoid air cells. Process also fills Prussak's space. There is no erosion of the scutum, or fo the ossicles. There is also opacification of the aerated petrous apex. Above appearance could be secondary to an inflammatory or infectious process, cannot completely exclude cholesteatoma occluding the typanic isthmus, although there is no evidence of bony erosion." I obviously have a million questions! My follow up from my family Dr was to go across the street and see the ENT. Who of course was not there and I have a follow up for later in the week. In the mean time, would anyone know what this report from the CT says?-what treatment?-recovery time?-is total hearing loss most likely? Above a week ago the right side of my face (same side as sore ear)has started to feel not right, just not the same. The right side of my neck is bowed out slightly and feels and looks again not right, slight pressure feeling. My right hand thumb and first two fingers have been tingling like pins and needles off and on. Is this connected? If I nod fast from straight ahead to down I feel slight virtigo, think thats all. No sure if I have given enough info, pls ask if I did not. I would like any feed back and info. Thanks,Keissa
    keissa 1 Replies
    • December 15, 2009
    • 07:35 AM
    • 0
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  • Hello, Your story helped me alot. I am 15 years old, 16 in 6 months, and i have Cholesteatoma behind my right eardrum also. I just found out about it on January 28th or so when i went in to get my ear tubes taken out from 11 years ago, there was blood in my right ear, so thats what caught my attention to go in the first place. They told me to put these ear drops in my ear everyday 3 times a day called 'Ciprodex Otic Suspension' and it had Steriods in it. If this doesnt clear up by Febuary 8th when i go back in, im going to need surgery. The E.N.T doctor told me that if it gets infected, it will damage the nerves in my head, and start to detiriate my skull. I was very worried at that point, and so was my sister. Your story helped me alot though to rezognize my disease, Thank you for sharing it. Im so sorry for what happend though. -Brandi.
    Anonymous 42789 Replies
    • February 2, 2011
    • 00:36 AM
    • 0
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