Chronic Hoarseness.........

Hi,
I was wondering if anyone suffers from chronic hoarseness and was sarcoid the cause ? The reason I am asking is because I have been dealing with hoarseness since 11/05 , this was when I first started down the road to sarcoidosis. Up until recently the hoarseness has been on the back burner but after getting a second opion at a local University for my pulmonary sarcoidosis they suggested I consult with an ENT . So I did and it seems that I have right vocal cord damage which causes the hoarseness . I have to have a thyroid scan done and a ct of the neck and chest. According to the ENT the damage could be caused by my thyroid the inflamation I have in my chest or a tumor pressing on a nerve either in my neck or chest.
So any info would be appreciated.

Thanks,
Kim

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I am a sarcoid-patient since 2000. I have an odd case becausemy sarcoids is not pulmonary primary, it is actually attacking my liver, spleen, kidney, skin, tear ducks, and my sinuses. I, too, suffered from constant hoarseness that could not be cured. And I then consulted an ENT and he suggested that the sarcoids had actually started in my sinus passages. I had an operation that entailed having polyps, damaged tissue and tumors removed from nasal airways. This operation was extremely painful but a blessing in the end. Prior to the operation, I spent at least 2 years not being able to breathe correctly and not being able to talk above a whisper.
I hope this helps.

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i seem to have occassional hoarseness late in the afternoon. I think perhaps it is coming on as my daily dose of prednisone is wearing off... especially if i am working through tapering down a few mgs.

as i have said in my other posts, the symptoms when tapering seem so closely related to sarcoid that it makes me very anxious. I am learning though and if I can just tough it out for a week or so, it will get better.

do you take any meds? is the vocal cord daqmage from sarc? or do they know yet?

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i've had hoarseness, too, which they can't explain. it gets worse with any increase in the inhaled steroid, but doesn't go away if the inhaled steroid is stopped. they've done the right tests to look at the vocal cords, but still no explanation. i wonder how common this is. you can see from my "nickname" the effect it has had on me; very sad. i hope yours goes away.

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CathyK,


Thank you for the response. They don't know yet what the cause of the damage is but they think a nerve could be to blame . Maybe the lymph node inflamation in my chest is pressing on a nerve causing paralysis. Or there is some sort of lump in my neck ?
The specialist sent me to the ENT to make sure nothing else is going on before we start treatment . Methotrexate and Imuran were brought up . But until I get clearance from the ENT everything is on hold . I feel frustrated. But atleast there is a plan in place. For the past year I have been seeing a local pulmonologist and doing basically nothing, I several times complaned to him regarding the hoarseness but he dismissed it to the inhalers I use, never once saying maybe you should see an ENT. One of the first things the new Dr. said was, have you seen an ENT ! Amazing , right ? I should have known better . But any advise I could give someone with sarcoid is if you can get to a major Universty hospital, do it . They seem to know more about sarcoid and treatments . I feel lucky that my disease is not as bad as others but I would really love to feel like myself again. For once since being diagnosed I feel like I'm on my way there.
Have you taken any other meds than prednisone ? And if you don;t mind me asking have you had side affects.

Talk to you soon ,
Kim

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II been dealing with the hoarseness now for about six months and it has gotten progressively worse until recently. I had stopped taking the inhaled steroids and I am back on steroids, 30 mg. They also started treating me for acid reflux. The doctor I saw today, they did a videostrobe recording of my vocal cords, says he does not think it has anything to do with the Sarc, but may be neurological since it comes and goes. At night or when I get tired it really can get bad. But, the Doc's point of view was he was looking for granulomas in my throat or on the vocal cords, no directly observable link to Sarc. So now it is just wait and see. Especially since my voice is getting better. But, I am glad that someone brought this up. It is too much of a coincidence I think.

Thanks,

Tim

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There are so many things that I am sure passes without notice with this illness because.. really who would have thought. I have hoarseness but mine comes and goes. It is at it's worse when I am tired or having a flare up. At times when i am feeling really ill I lose my voice alltogether.
It never would have occured to me that this might be something that i share with other Sarcoid sufferers. Thank-you so much for asking this question.
Although we may all vary in cause (of the hoarseness) it is still very intresting that it is something that effects many Sarc sufferers.
Good luck with your tests!!!

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thank you for your comments. many of my problems have been nerve-related - facial numbness, severe vagal neuropathy. some of the docs also have thought that my vocal problems are nerve related - granulomas can form in areas where the larynx will be partially compressed. they also can be microscopic, so can still be present in the vocal cords even if not seen.

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I agree - it's not something I had really thought could be caused by sarcoid - but I've suffered on and off with hoarseness since my sarcoid started a year ago - and it is worse when I'm tired or having a flare-up - so I think I will mention it at my next appointment in 2 weeks time! Thank you for helping me see that it might be connected to my symptoms and the dreaded sarcoid.
I also feel 'bunged up' a lot and very heady - so I guess my sinuses could be affected - but as it hasn't felt like sinusitis (which I've had in the past) I've just ignored it.
So I think the messsage coming across on many discussion boards is not to ignore any symptoms - who knows which ones could be connected to sarcoid.

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My hoarseness was the catalyst for seeking medical attention. It is caused by a sarcoid swollen lymph node in the upper chest that squeezes the recumbent laranygial nerve. So I've beensounding pretty awful for about two years.

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I may not check this community daily but m email is jdrr22@aol.com

I'm being treated at university of pennsylvania (dr rossman,dr sturman,dr brucker) and lehigh valley hospital (dr schellenberg)

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I, too , have suffered with hoarseness and sinuitis. The hoarseness is sporadic, but the sinuitis lingers. My drs told me that the hoarseness is due to compression in the larnyx by the enlarged lymph nodes.

They really haven't given me a reason for the sinuitis.

I have just begun a regimen of Humira, 40mg bi weekly. I wasn't a candidate for Prednisone. Hopefully, it will give me some relief. I have noticed decressed pain in my back and joints, some size decrease in my neck and facial sarcoid. I am keeping my fingers crossed that this medication will work for me.

If anyone is in the Chicago area and is interested, a clinical trial is being conducted by the University of Chicago, in conjunction with Abbott Labs, with Humira and Sarcoid.

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