Cogan's Syndrome

Hi! My daughter was 5 when she was diagnosed with cogan syndrome. She was treated with steriods and once they got the right dose she stabilized. From the onset to her illness being stabilized was practically 5 months. She is now 3 years on and has a cochlear implant which is a wonderful device which provides her with a good level of hearing. The hearing people must take you seriously and refer you on to someone who can help. Print out any info you can about the disorder and give it to them as sometimes these professionals have not heard of this syndrome.
It will be an emotional recovery and I wish you all the best.

Hi, I was diagnosed with cogan's syndrome in june 2000 after seeing multiple doctor's. I first had severe corneal edema, followed by severe hearing loss and then vertigo. The corneal specialist I saw finally diagnosed me and then I went to see an ent specialist and immunologist. The eye guy gave me prednisone drops for me eyes and the inflammation went away. The immunologist took blood tests, but all autoimmune biomarkers came back normal. He gave me celebrex and then put me on the 800mg vioxx. It was the scariest time in my life. I was 28 years old when this happened. In september I started getting my hearing back even though hearing tests stated that I have 90% permanent hearing loss. I seemed to have recovered but still go for annual hearing tests. I am now 33 years old. My ears block frequently and I am sensitive to sunlight. Whenever I lose my hearing after taking a flight or having a cold I freak out but my ears eventually un-pop. I also had a healthyl baby boy when I was 30 years old but during my pregnancy I had an ultrasound done every 5 weeks to make sure that the blood flow was normal to the baby. Apparently, cogan's syndrome is an autoimmune disease and a form of a vasculitis. That is why they had put me on on anti-inflammatories. They hoped that the inflammation in my head would go down and stabilize my condition.

Who ever knows someone or has been diagnosed with cogan's syndrome should really go to several doctor: eye specialist, ent and immunologist. I live in montreal and the hospital I went too was royal victoria (under the muhc- mcgill university health center). I feel lucky to be able to hear gain!

Responding to kurstin. Reguarding 1-20-05 message. My name is larry I live in ca and I am 55 years old. Kurstin, i'm responding to your post, I was diagnosed with cogan's syndrome in 1985, 20 years ago. I experienced eye problems classic to c.S. (cogan's syndrome). I've also experienced complete hearing loss and receieved a cochlear implant in 1988. This implant restored my hearing to a usable level, and i'm able to function in environments with some limitations. My main reason for responding to your post is to let you know that there are older fogies out here that have lived with this condition for at least 20 years, based on my experience. I talk to my doctor and he recommended that you contact this kal on the posts for cogan's syndrome in the montreol area, and through her get some doctor's names that helped her in the montreol area that can be in touch with you and help you in the admonton area. It is extermely important that you find doctor's who have worked with this condition. This is why my doctor suggested that you reach out to montreol. I am very sensitive to your dispair reguarding living with these symptoms. I have experiences to numerous to mention at this time with the syndrome. I am making myself open to your inquieries and we can set up through e-mailing more frequent communication. I leave that entirely up to you. I'm learning to use the computer and going to be using dragon program which is a voice generated copy. My daughter is typing for me at this time. I checked the notify me when a reply is posted so if you reply or someone else replys, I will get an e-mail. I hope you checked that box.
Sincerely,
larry

Hello i'm ahvilla
hs
i'm 43 and I was diagnosed with cogan's syndrome in may of 2005 I had lose of hearing in both ears and trouble seeing i'm currently being treated at the university of michigan by Dr.Telian, Dr. Bruno for hearing and vision. Dr. Bruno did surgery on my eye's to reduce pressures from above 50 in both eye down to 7 in the right and 8 in the left and she is still treating me when the other Dr. Said all he could do was give me eye drops and no more than 6 lasher treatments to reduce pressures. Dr. Telian is an ent specialist and the perform implant surgery on me and now i'm waiting for the swelling to go down and heal arounnd the inplant so that it can be activated in a few weeks, all the was done I a few monthes at the u of m hospital when no one else had a clue as to what was going on with me. Looking for some good medical attention go to the u fo m hospital. I hope this will bless some one in need if a blessing. For god has truly bless me .
Just depend on the lord in all that you do and he will not forsake you at all. :lol:

Hi kurstin: I believe it is important for you to seek help from a physician in a university teaching hospital. Treatment with methotrexate is wonderful - I have total loss of hearing in my left ear and have been treated with methotrexate with great success to save the hearing in my right ear. This is truely a very uncommon illness nationwide. You need a good ophthalmologist, ent doc and rheumatologist - family physicians will not know how to handle this for the most part. Prednisone is a quick fix for me and stabilizes the symptoms pretty quickly but health-wise for me was not the answer, methotrexate was. Good luck - edna

I was diagnosed with cogans in sept 05. I lost my hearing in my right ear in august 05 then my left ear april 06. I was treated with prednisone and methotrexate, but every time I got down to 5 mg pred. Something would happen. I had a stroke in june 06. I lost the use of my left side, but am slowly gaining it back. I had implant surgery oct 13 and get them turned on nov16. I am doing 6 chemo treatments, the Dr. Thinks she can get rid of this. Is there anything else I should know. I haven't heard anyone mention a stroke. I was 29 when this happened.
Missy

Hi, Just "re-diagnosed" this past week... HLA-B27 and Cogan's syndrome. Have been treating Pseudotumor Cerebi for the past year with Prednisone which it turns out would be the first step of treatment with the Cogan's [I guess]... should be seeing the Rheumatologist soon to begin Methotrexate. Have also been seeing an ENT specialist, a Neuro-ophthalmologist and a professor of Otolaryngology and Neurological Surgery....whewwwww....now beginning the cycle again.... but at least now I have three fairly sauvy doctors in agreement....That's about the limit of my knowledge!! Very little info available and really no idea what to expect. Still trying to wrap my head around it...just got a handle on the PTC. Am on my third set of hearing aid in 6 months.. thought it was a problem with the aids, now I find it's a problem with me.... just got what I call "my crosseyed glasses", they're prisms to deal with double vision. I just feel like stomping and screaming but have found that does very little to help the situation so I've come to you, who also have this syndrome,
and say "Hi", nice to find you. Thanks kjo