Having ear troubles

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Regular Member

Date Joined Apr 2006
Total Posts : 46
   Posted 10/16/2009 8:35 AM (GMT -6)   
Hi friends. Sorry to hear that so many of us are feeling bad. I have been having ear trouble on top of my lupus issues. Have had a ear infection since June. Finally went to an ENT who looked in my ear and said you have a cholesteatoma which is a noncancerous tumor in the ear. He said you have had this a long time doesnt anyone every look in your ears!Had a ct scan 4 weeks ago and found out it has already destroyed the ear drum and eroded the bone separating the ear from the brain. I have been having headaches and pressure in the top of my head. Just feel really yucky.I also have a cholesteatoma in the other ear as well. I am scheduled to see an otologist on Monday to talk about surgery. I will probabaly have no hearing in my left ear after surgery. This is tough to deal with when you have no insurance. I am hoping that the hospital will approve me for indigent care but then I will still have the surgeon and anastesiologist fees etc. I was told that I will need at least 3 surgeries to take care of this issue. YUCK!
Also had labs drawn last week and the doctor said my potassium was low and fasting glucose was 64 so that was low also. Has always  been normal before. Thanks for letting me share and for being such a great supportive group. 

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 10/16/2009 10:13 AM (GMT -6)   
HI Vanae,

I'm sorry about your hearing loss, it makes you wonder how doctor's miss stuff like this! I hope the surgery goes well, please update us when you can. Take good care of yourself!
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)

Regular Member

Date Joined Oct 2007
Total Posts : 184
   Posted 10/16/2009 5:26 PM (GMT -6)   
My gosh... that is rough... I've never heard of this...but I sure wish you the best... take care...

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 10/16/2009 6:13 PM (GMT -6)   
I am sorry you are dealing with this. I know I get so frustrated when my ears are just stuffed up from sinus troubles! I will keep you in my thoughts and prayers. Please keep us updated. Judy

Regular Member

Date Joined Oct 2006
Total Posts : 281
   Posted 10/16/2009 7:43 PM (GMT -6)   
I am sorry you are dealing with this. I hope it all works out for you!! Will you be having the surgeries soon?
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

Veteran Member

Date Joined Jun 2008
Total Posts : 669
   Posted 10/16/2009 8:49 PM (GMT -6)   

Hi Vanae - so sorry you're having this trouble, especially the hearing loss.  So many doctor's really don't examine like they should, anymore.  I worked for a family practice in the 80's and in those days, everyone had to put on a gown and the doctor actually examined his patients.  I hope the surgeries go well and help you to feel better.  Please keep us posted and take care!


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins

Regular Member

Date Joined Apr 2006
Total Posts : 46
   Posted 10/17/2009 8:29 AM (GMT -6)   
Thanks for all the encouraging messages. it just helps to share. I have my appointment with the surgeon on Monday so will know more then. I am dealing with those headaches along with constant ringing in my ear and some dizziness. I am using drops in the ear every night right now till my appointment. I am nervous about surgery and especially dealing with the head. The doctor will make an incision all the way around the back of my ear and have access to the tumor that way. The operation will last any where from 3 to 7 hours depending on the size of the tumor. It is close to the facial nerve so they have to be careful to not cause facial paralizes. They remove all the hearing bones if they are destroyed by the tumor. They wont know how close to the brain the tumor is until the surgery takes place.The ct scan doesnt show the full extent of the tumor and damage it has caused. It just gives them some idea of what they are looking at as far as surgical procedures.  I am just hoping for a good outcome.I was so shocked to hear this when I went to the ent for what I thought was just a persistent ear infection.I have never heard of a cholesteatoma before. My rheumy was the first one who acted concerned about it. When I went to my last appointment with him I told him I had an ear infection and could he check my ear. He looked and said that doesnt look good you should go to an ent. 
I just recently started cellcept and was going to be trying to taper off the steroids but now the rheumatologist said I cant because of the upcoming surgery and will need to stop the cellcept at least 2 weeks before surgery. So anyway that is where things stand for now and I will write more after my doctors a[ppointment.
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