Bilateral Vocal Fold Immobility with RA - WARNING

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Wed, May 27, 2009

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reconstruction surgery or bunion surgery

I lost my voice after reconstruction surgery on my foot, over 4 weeks ago. I also have a cousin with RA who almost died (hypoxia, heart attack, permanent trach in her neck), so this is serious. ANYONE with RA who is considering any kind of surgery with a general anesthetic needs to see an ENT (Ear, Nose and Throat) specialist pre-op to see if they have any vocal fold nodules or cricoaryteoid joint damage in their throat. When you are intubated, it can damage the chords, cause constriction, and paralyze the vocal folds (chords). You could die, at the least you will end up like me and hardly be able to talk. I can only whisper.

It is esp. dangerous if you are having any kind of bone work done, because you have to go off your meds, because bone healing is an inflammatory process. I had a complete relapse of RA during the 2 weeks I was off, and that is why I got such a bad nodule. I couldn't eat, drink, and almost got to the point where I couldn't breathe, so I took some anti-inflammatories, since most of the bone healing was done. However healing may take up to a year, if at all. I am a singer, and I love to talk, so this is torture.

Please, please get your throat checked, and if you can have an epidural, where you won't need to be intubated, that is the best option. I don't know about joint replacement, but it is better to be safe than sorry, although this condition is supposed to be rare, it is not worth the risk!!

PS. My foot is doing well - a little nerve damage to the back of the third toe, but only one week to walk - and my foot looks very pretty. Now the "good" foot looks so ugly, and has gotten worse from jumping around on it for 5 weeks. Don't think I will chance surgery again, though.

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Kelly Young

5/29/09 8:40am

Hi Angela!

When my RA spread quickly to every single joint, it did get my vocal chords, too. I often am hoarse, but sometimes have no voice at all.

I have been scared to death on the several occasions when I could not breathe.

For a couple of years, I did not connect this to RA. Then, one day I was researching another aspect of RA, and I read about my throat symptoms. I ALMOST FELL OVER. I shouted to my daughter: COME HERE AND SEE THIS.

I have not been able to determine whether there is a treatment which can prevent a breathing crisis. I have searched and read a lot online. Disease control is obviously really important.

I am trying to get an ENT to examine it. But he has to know what he's doing. I talked to one and he said this exactly: "If you can't breathe, cut a trache."

You are right, they do call it rare, BUT I READ IN AT LEAST TWO PLACES THAT, ACCORDING TO AUTOPIES, 85-87% OF RA PATIENTS DO HAVE AT LEAST SOME VOCAL CHORD INVOLVEMENT.

Thank you so much for bringing up this obscure, but life saving topic. How can we make them listen to us when we can only whisper?

Have a good day, Kelly

Angela53510

5/29/09 10:59am

My cousin with the trache gave me 5 articles from scientific journals about this issue. Esp. about needing a trache, and I don't want to go there. I did a lot of research on-line and most people don't even know there is a joint in the neck, let alone the possiblity of nodules on the vocal chords. Even my rheumie thought nodules weren't possible. I read one report of autopsies of over 100 people and 47% of them had definite throat involvement caused by the disease. Your number is a lot higher, but it makes sense that if it can attack any joint, or nodules under the skin, why not the throat? One thing I have always noticed is that the more you use a joint, the worse it becomes. I took some courses at the rehabilitation hospital locally on dealing with RA, and one of the things they emphasized was joint protection. But how many people think about talking loud, screaming, or talking too much as damaging your joints? LOL. yet the research agrees that prolonged talking, or too loud of talking aggravates the condition. I see the ENT in 9 days. I have carefully photocopied numerous journal articles and references to the involvement of RA and intubation, also as a delayed reaction. (Docs are all told that it must be prolonged intubation, and immediate damage). I was only intubated a little more than an hour, and I didn't notice the first effects for 5 days (lower voice pitch), and another week before I got hoarse. I wish I knew then what I know now. I should have shut my mouth, and gone immediately to emergency. Or at least when I couldn't eat, drink or breathe. I just hate waiting in ER, for them not to understand or care what is wrong! Apparently the treatment is anti-inflammatories, which I can't take yet because the holes where the pins were in my toes are not past the 3 week mark. So I am waiting patiently. If it is actual vocal fold displacement, they can sometimes manipulate it back into place with a "spatula" The other option is surgery. NOT! Sometimes they wait for up to a year if it is just paralyzation, and it will "spontaneously" recover. I can only hope. The ironical part, is that my husband is obviously hearing impaired, can't hear me whisper, is in denial, and refuses to go get his hearing checked. I've tried writing for him, but he can't see anything close (try past the length of his arm), so he can't hear me, and he can't read what I write. Either that, or he is just happy to have me quiet and not have to listen to my demands! LOL. I guess I am learning how to listen more - I did talk too much.

Sparky22

5/29/09 11:41am

Wow--this disease just continues to amaze me. Thanks for writing about this. The other day I was having trouble swallowing and felt like something was stuck in my throat (it still does). I thought it was totally unrelated. I'm so glad your voice can be heard--loud and clear--here!! Best to you.

Kelly Young

5/29/09 11:55am

Angela, I would really like to trade articles with you . I have at least two that use the high number for autopy research. And I obviously need to read yours. I have read a lot, but it is tedious to read medical journals, isn't it?

I have experience because I have been doing it for years for my Hashimoto's.

Hope the appointment goes well. I'd really like to hear about that. I tried to take some articles to a dr. before and that hasn't worked out but I BELIEVE IT IS THE RIGHT THING TO DO and if he doesn't listen, find one who will. I have not found one (ENT) yet.

Your cousin sounds like she's got it rough. Maybe you all will get a laugh from my new blog - written with humor so we can get the endorphins revved up. ; )

Keep in touch, Kelly

www.rawarrior.blogspot.com

Angela53510

5/29/09 12:30pm

I read your articles on your blog and they were excellent. I sent the address to my sister. She has a Bichon Frise that just died of cancer, and a "new" puppy who hasn't quite replaced the old one. She was just diagnosed with MS. My article about autopsies is in the other room, and I am worn out from jumping back and forth on my crutches. I will try and write down the address and send it too you, soon. I have only had one doctor who would read my articles I cut out - my psychiatrist. He also helped me with so many medical issues and problems. When I told him that Wellbutrin, prescribed for my winter SAD stopped my hot flashes and raised my body temperature, he immediately went to his Canadian Medical Association website and looked it up. He had never heard that before, and sure enough I was right! There are actual documented physiological reasons and pathways etc. for both things. He said he is going to try it on some of his other depressed patients, who are suffering from hot flashes and cold body temperatures, and see the results. It is nice to have someone who listened. Doctors are so arrogant. One thing I have learned is to do the research and cover all your bases. I just wish I had been more careful about this throat and intubation issue. Angie

Angela53510

5/29/09 12:36pm

If your throat gets worse, and you start having trouble breathing- go to emergency immediately. I would take some anti-inflammatories (like Naproxen or prednisone or even Omega Oils) right now if you are having trouble swallowing. It seems like the usual meds, which are so effective in our joints (like methx and biologics) don't seem to help the throat much. Try and do some research on dyphonia and RA, cricoarytenoid joints and RA or intubation and tracheotamies to take with you. I don't know why doctors find this so obscure! It is obviously extremely normal - we just need to start complaining about it more, and make it an issue, I guess - stop worrying about our hands and feet, hips and knees, and whine about not breathing or swallowing issues. How many years will it take?? Angie

Ta Paplanus

5/23/11 3:59pm

Angela and Kelly, I'm looking for research on the effects of RA on bone healing. Angela, you mentioned bone healing as being an inflammatory process and I'd love to have your sources on that information. I checked with the Arthritis Foundation and they have nothing to offer. Can either of you point me in the right direction? I'm new to this.

Ellen Galo

6/ 3/09 10:31am

I just came across an article about a women with a mass in her trachea (the cric.. joint) that sent her to the ER when her breathing was blocked. The doctors originally thought was a squamous cell carcinoma. It turned out to be RA (after surgeries & biopsies). There is the possibility of treating it with injections of corticosteroids, of systemic ones don't work. I'm mentioning this because I thought it might be a possibility because the steroids wouldn't be reaching your feet and screw up the bone healing.

This article also gave the following statistics :

Incidence of larynx in RA is higher in female (65%) than in male (20%). Prevalence has varied from 32- 75% in laryngoscopy. 54-72% on CT scans. Only 26% have laryngeal symptoms: hoarseness and foreign body sensations are the most common. Other symptoms include dyspnea (breathing problems), odynophagia (swallowing pain, I think), coughing, sore throat, stridor (harsh whistling sound while breathing), and acute airway obstruction.

also : "In the chronic stage, larynx initially appears to be normal. On careful observation, howeer, focal vocal cord lesions, changes in arytenoid symmetry, bowing of the true vocal cord can be seen. ...

Conclusion. When a patient with a history of RA presents with a submucosal mass in the larynx, cricoarytenoid rheumatoid arthritis should be strongly considered. (and more suggestions & detail). from the American Journal of Neuroradiology. April 2005.

Angela53510

6/ 3/09 7:34pm

I am going to search out this article. That sounds exactly like what I have, except it was accerbated by the intubation. Thanks so much for your research.

Angie

Bilateral Vocal Fold Immobility with RA - WARNING

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