Cogan's Syndrome And Polyarteritis Nodosa Posted: 04-05-04 00:34am
I have systemic polyarteritis nodosa (pan)
and ra. I'm a 45 year old female and
have had ra for 18 years and pan for 10
years. My hearing has slowly gone
downhill for the past 2 years, but moreso
in the past year. I had a hearing test a
few months ago and they told me I may have
cogan's. Finally, I know what's going on
and why.
How prevalent is cogan's in patients with
pan and ra? Will I eventually need a
hearing aid? About a year ago, I made my
first skydive at 13,500 feet and received
baro trauma as a parting gift. I didn't
blow out my eardrums, but I stretched the
tympanic membrane and injected (?) the
eardrum. That cleared up but I wonder if
I did any permanent damage to my hearing.
This was before I realized I may have
cogan's. How fast can cogan's effect my
hearing?
Any information would be helpful.
Thanks,
beth
|
susie141
New User, Becoming EHEALTHy
Joined: 28 Jun 2004 Posts: 2
Posted: 06-30-04 04:37am
Hope you're still checking this site,
although I realise it's a long time since
you posted. I'm afraid I can't tell you
how common cogan's and ra or pan are
together, but given that cogan's is rare,
I doubt there'd be many people out there
with your combination of illnesses. I
have cogan's, (and just cogan's), but I do
know of other people with cogan's who have
more than one autoimmune disease.
Are you getting any treatment for your
hearing loss? Treatments of steroids and
/ or chemo drugs are effective for some
people. But, treatment needs to be early
and in very high doses.
As to whether or not you will need hearing
aids, it's impossible to say. Cogan's
effects people in different ways and to
different degrees. But, unfortunately,
generally, the prognosis for hearing is
very poor.
Do you have vertigo/balance
problems/ringing in the ears? And what
about your eyes? You made no mention of
them. If cogan's is the source of your
hearing problems, I think you should seek
immediate treatment.
|
bk2kelly
New User, Becoming EHEALTHy
Joined: 05 Apr 2004 Posts: 2
Cogan's Syndrome And Polyarteritis Nodosa Posted: 06-30-04 11:53am
Thanks for writing back. I check every
now and then for a response. As for my
hearing, I get lightheaded every now and
then (possibly due to my blonde hair ) and I lose my
balance sometimes. I also have ringing
in my ears, but i've had that for years.
I always figured that was because I had
chicken pox as a child. I'm due for
another hearing test in sept.
I don't take any meds for the cogan's. I
don't know how long i've had it, so I
don't know how long i've been without
treatment. I am, however, taking humira
injections for the pan. I used to take
cytoxan and prednisone, but they quit
working and cytoxan is very toxic.
Don't know about my eyes, either. I had
a cataract removed from my right eye a few
years ago, but that was due to all the
steroids. I have a cataract in my left,
but it's not bad. What sort of eye
problems? They hurt sometimes and I wear
glasses.
Thanks again for your input.
|
susie141
New User, Becoming EHEALTHy
Joined: 28 Jun 2004 Posts: 2
Posted: 06-30-04 15:48pm
Glad you were still out there after all
this time after your original post. The
balance problems in cogan's are usually
severe (initially great difficulty in
walking accompanied by nausea/vomiting),
hit suddenly, and then gradually improve.
However, of course that's only the typical
picture and not everyone with cogan's
experiences that. Inflammatory eye
problems are part of the criteria for
diagnosis. The types of inflammatory eye
disease are varied. Eg. Interstitial
keratitis, iritis, scleritis etc.
Symptoms are red painful eye/s, tearing,
sensitivity to light, blurred vision.
You mentioned that you have already had a
hearing test. Do you know what type of
hearing loss you had? Were the high, mid
or low frequencies effected? And was it
sensorineural rather than conductive?
How's your hearing for day to day life?
My aunt lives in ireland.....And she
started getting weird symptoms after she
had her two kids...Well, she was just
recently diagnosed with cogans...And is
literally the first person in irelands
history to be diagnosed with
cogans...Thats a neat fact, but I hope she
gets better...She had surgery on a major
aorta recently and I pray that she gets
better...It wouldnt be cool to leave two
girls and a husband behind.. but
anyways, just wanted to mention that
|
sherbeardd
New User, Becoming EHEALTHy
Joined: 07 Jun 2007 Posts: 1 Location: Kitchener
Cogans Syndrome Posted: 06-07-07 05:18am
My 16 year old neice has been diagnosed
with Cogans syndrome. I am having
difficulty with this diagnosis as her
onset was not rapid but slow and
progressive since early childhood. For
many years her mother was told she
suffered from allergy symptoms due to
cigarette smoke. This was reduced as much
as possible in her home environment. I
believe there are other contributing
factors perhaps more environmental issues
that have not been explored. She has been
for at least the past 3-4 years suffering
from Irritis which is also a symptom of
cogans syndrome. She has had ear surgery
in the past 3 years as it was discovered
she had a pocket behind the ear that
presented as a tumor. The ear which was
chronically infected had found a way
..possibly a fisure into the skull cavity
and was emptying the excess purulent
drainage there. This is inturn had
literally eaten away a section of the
skull bone and a section had to be removed
and the tumor like sac removed. Her
eardrum was reconstructed as the ear canal
had collapsed and the tiny bones and
tissues were destroyed dues to the
infection. This young lady had chronic ear
infections since she was a toddler and
despite repeatd use of antibiotics no one
had ever thought to do a CAT scan or MRI
to further investigate why the infections
persisted and were resistant to
anitbiotics. Today she has considerable
hearing loss to that affected ear and now
there is a possiblity that she may loses
her sight. Have you ever seen this at
this age or younger? She hasn't seen a
specialist yet but has been reffered to
one. Where can I go to find out more
information about this rare disorder?
|
121234
New User, Becoming EHEALTHy
Joined: 10 Aug 2007 Posts: 1 Location: Maine
Cogan's Syndrome And What I Have Gone Through Posted: 08-10-07 09:46am
I was diagnosed with cogan's synndrome in
2003, i frist had problems with my eyes, i
thought it was conjuctivitis..........i
had even checked with my school to see if
anyone else had it. It got worse, they
were itchy, watery, very, very, red and i
could not be in any light. I lived in my
downstairs bedroom for 3-4 months. I was
vommiting, could not hold down any food,
lost quite a bit of weight, could not be
outside at all, nor drive my children
anywhere. I was sent to a specialist in
Portland, Maine who diagnosed me w/Cogan's
but I still had my hearing??? A few weeks
later my left ear started to decrease
rapidly, and was completely gone. In my
right ear I had 17% hearing, and that
eventually faded to 0 percent. Hearing
aids were mentioned to me, but my hearing
loss was so rapid the only other option
was a cochlear implant. I did have a
cochlear implant in May 2005 and had it
turned on 06/05. It was different type of
hearing, and still is but I can have a
conversation one to one. I have proceeded
forward w/school and the teachers
acommodate my needs. The years have been
very tough to my children, husband, and
self. I was on steroides, pred forte eye
drops, and even tried enbril shots (2x
daily). I had to report once a day for a
week to the local hospital for prednisone
iv's (1000mg) daily. It was awful, i
never slept, i was bloated, had pimples
everywhere, etc. Unfortunately, the only
thing that worked for me was the cochlear
implant. I do recommend it for late
deafened. I was 36 years of age when this
started to come about. I am now 40 and I
do tire very easy compared to others my
age. I still do eyedrops 2x daily, and
other medications that I need for self.
I would like to hear from others who have
Cogan's or any type of autoimmune disease
and how their life is progressing?
Just wanted to share my story because I
know Cogan's is very rare.
|
rose_knows
New User, Becoming EHEALTHy
Joined: 22 Oct 2007 Posts: 1
New Possible Diagnosis-atypical Posted: 10-22-07 21:21pm
To 121234, I have recently been
undergoing a battery of tests including
blood work and MRI. The reason this is
being done is because I started losing
sight in my right eye only. I believe it
is called Interstitial Keratitis. Through
predinsone I was able to regain some
sight. My corneal specialist has
indicated that all my symptoms combined
are Cogans, but I have to follow up with
general practictioner. I have had hearing
loss for years and was diagnosed with
Menier's long ago. I am usually a strong
woman, but now am not certain what I am
facing with three children and a husband.
I am still young-34. According to the
research I am going to face deafness-what
else? Any input is helpful.
) and I lose my
balance sometimes. I also have ringing
in my ears, but i've had that for years.
I always figured that was because I had
chicken pox as a child. I'm due for
another hearing test in sept.
but
anyways, just wanted to mention that