Reoccurring

Hello...WOW...I am "new" to this cholesteatoma myself.

I was scheduled to have my 1st surgery next week on the 13th.  

Mine is touching the skull bone and has done a lot of damage in there from what the CT scan showed.  My Surgeon wanted my surgery done first case in the morning, o the first available Friday.  I got it scheduled but they called yesterday and said that the Doc was unable to get his way on the surgery date at the University that my insurance would pay for.  The next availabe date at that facility would have been in January some time.  I was SO UPSET.  After calling my insurance company and telling them my situation, they sent me an "Out of Network Waiver Form" that they wanted my Surgeon to complete and get back to them.

This way (if approved) I could get the surgery done at his normal facility and it would be the same as if it were an "In Network" facility.  The Docs nurse called me back and said that the Doc told her 9 x out of 10 they deny those forms and it's all a bunch of red tape.  He said he WANTS to do my surgery and said he is going to be doing some cases at the covered facility on the 20th and he will stay later that day so that he can do my surgery.  He is the BEST in this field from what I have been told.  He has the most AMAZING "Positive attitude".  I feel so comforted that he is going to be my Surgeon.  

I completely understand your nervousness and worries.  

I am really concerned my self as my symptoms have increased throughout the years and that is how they finally found it.

I am experiencing so much dizziness (off and on) with this and other weird things.

I have completed 10 days of antibiotics to clear up an infection that was in it and 2 weeks worth of ear drops as well.  Now I am just waiting for the surgery.

I am doing my best to stay healthy for the surgery (and its not easy because this is flu/cold season).  I also work at an educational facility and try to stay away from direct contact with the students.  I'm drinking extra water and taking Airborne 2 x a day to try and combat anything before my Surgery.

I won't lie, I AM SCARED because I don't know a whole lot about this and when someone tells you it is that close to your brain...You know what I mean.

I've been told that the recovery is about 3 weeks and a total of 3 months to get back to normal...can't even imagine what the recovery process would be for an "abcess" on the brain.  

I have no lumps, I was just in a lot of pain and the Crickets in my ear NEVER shut up.  The pain cleared up with the infection but I notice the lightning strikes (I call them) coming back.  It's like sharp bursts of pain that come and go.  The dizziness is the worst part as it disrupts my life at times and seems to be getting worse.

You did not mention how old your daughter is.  I am 54.  Mine has been in there for a very long time.  But they say it can take years and even decades for it to grow to the point of symptoms.  

I wish her/you the BEST of luck and will keep you in my thoughts and Prayers.

 

How old is your little one?  My son (5yo) is going for his first surgery on Dec. 4th.  How much time has there been inbetween surgeries?  I'm sorry she's on the 4th one...this is such a scary thing. 

my daughter is 27, she had ear infections constantly for the first seven yars, no I am not axaggeratting, i had takn her and her records to a specialist 5x begging for them to put tubes in her ears; they said she as not a candidate for it; at at age 7 again at a specialist I was bound and determined not to leave until they agrred to do tubes.  Again the Dr. said she didnt need tubes; i was fierce! I said what does it take, look at her records, she has been on amoxicillin 28 days out of a month for 6.5 years; not to mention the migraines she has; he said he ran every test but one; i said run it! This test measured pressure in the ear- none nothing showed up on the graph, he was stunned, 2 days later she had tubes.  never had problems again until 3 years ago; her first time being diagnosed with cholesteatoma.  Other problems after being on antibiotic for 7 years of her life she has no immune system, allergic to latex, and after her first ear surgery a prosthesis came out the next day and had infection, 3 trips to the ER, they wouldnt even look at her ear and sent her home.  4th time i wheeled her to the clinic where the Dr. who did the surgery and I demanded he come look at her ear, she couldnt walk, dehydrated, his staff brought her an emisis bag because she was vomitting; he didnt come out to see her, 3 days later was her follow up appt. they wouldnt let me go with her because of me being so upset at the previous visit, 10 minutes later staff said the Dr. wanted to see me, I go back and he tells me he is admitting her foe leakage and inflammation; I said no you are admitting her for infection, which causes leakage and swelling, yes he says that is correct. I said this could have been prevented if you would have seen her 3 days ago, he tells me his staff never told him; he asked why i didnt bring her to ER; i replied I did and received the same reaction as your staff.  She was admitted with a high concentration of antibiotic for 3 days.

just to clarify, her incision from her surgery becme infected becuse down the road we found out she is allergic to stitches now.

 

Hi Theresa,

WOW...I am so sorry to hear of all of this trouble your daughter has had to endure.

It seems as thou much of it could have been prevented had they been more thorough.

I do understand about the repetativeness of the antibiotics.

My medical Doctor could never see an infection but would give me the antibiotics anyway because of the symptoms.  I finally insisted that I get an appointment with the ENT.

Come to find out that the reason my Doc could not see anything was because the ear drum was sucked in and there was a piece of skin over it.

My ENT could not even see anything either until he inserted a camera down throu my nose and saw the ear drum was inverted, he was then going to insert a tube in my ear to prevent any more infections and when he pulled back a piece of skin all the debri fell out and that is when he said he could do no more to help me, it was out of his hands.  Of course his office had performed some additional tests prior to making the call to put the tubes in and also I had to try a round of "Steroids" (which I will NEVER take again as long as I live) before they would take the next step to consider the tube.  Thank God I followed up and insisted something was terribly wrong.

Anyway...I hope that your daughter is doing better today.

That is VERY SCARY...what are they considering regarding the abcess as far as the antibiotics and her immunity? I am guessing that she is still in the Hospital?

This disease is so puzzling because they say it is supposed to be slow growing but yet your daughter has had so many surgeries and is still so young.

I cannot even imagine how you must feel.

I will be thinking of her, Praying for her and hoping for her quick recovery.

Please keep me informed on how she is doing.

Thanks

Brought my daughter in yesterday; day 5 after surgery and again its infected, the Dr. said he couldnt believe how much cholesteatoma was in there; Mondat she will have anither surgery for a skin graph from her arm to cover mastoid bone; they will also check to see if the brain is still bulging if so she may need brain surgery.  He informed us this will be a life long battle.  This is so hurtful to see my daughter go through this and scarey, but I dont let it show that Im scared.  Now Im wondering if she would be eligible for disability, she hhas 3 kids and cant hold a job because of her ear problems and surgeries

 

OMG...I am so sorry to hear this Theresa.

I have and will continue to keep your daughter and you in my Prayers.

I am just in shock and still wondering why they did not give the antibiotic in the IV.

It is hard enough to take care of little ones when you are a normal, healthy adult let alone having to function when you have these type of symptoms that result from this disease.  That poor girl, I hope and Pray that they can provide her some support.  Good thing she has you Theresa.  

I read so many different stories on here of how different each area around the World treats this disease and how some areas seem to be so far ahead with technology in treating it than others.

Of course each case is unique but it just seems to me that the Doctor's should have some sort of Directory or Discussion Forum where they can research and ask questions of the newer procedures and treatments.

I am 8 days away from my 1st surgery and I have to say that reading everyone's stories have me concerned.  I know that mine has been growing in there for over the past 20 years and has done enough damage that the symptoms are getting worse now and much more bothersome to deal with.

I guess Ive known something was wrong with it for years but since it was not causing me any pain or discomfort, I just didn't worry too much about it.

The fullness which was the only symptom did not bother me enough to want to inquire any further.  I did take a trip with my Sister and we went on a plane, the pain was "terrible" on that flight.  I was treated "repeatedly" for ear infections.  A year later the Tennitus started and I let that go as well.  Finally when the pain would not leave and the "Thunderstorms" would not go away after "more" antibiotics, that is when I insisted that my GP make an appointment for me with my ENT (who eventually found it).

I can't blame it on the Doc for not finding it, because even the ENT was unable to see it until he did further testing.

So I guess even the very best Doc/ENT/Surgeon in the country unless their patient is adament that something is wrong would be unable to detect it unless they make the effort to perform the tests needed to find it.

This whole process is so expensive and frustrating for us patients. 

I am so glad that we have these forums to make people more aware of this condition but unless you have actually been given the name "Cholesteatoma" I don't know if anyone would ever hear of it.

I do know that it is a wake-up call that if something does not feel normal (no matter how trivial it seems) I should probably get it checked, so I have learned that much.

Well I hope everything goes well for your daughter and Please let her know she is not alone.  Hopefully, now that they know what she is dealing with it will make her recovery much better and the prevention of anymore serious issues much better.

Please keep us posted.