Anyone have experience dealing with Vocal Cord Nodules / Bamboo Nodules?
I was officially diagnosed about 1 year ago. I'm still having issues finding a medication that really works (thanks, insurance, for those flaming hoops you're making me jump through).
I can handle the pain. I can handle the swelling. I can handle the sleepless nights, and the impossible days. I can handle the inability to maintain my pre-diagnosis exercise routine. What I cannot handle is the vocal cord nodules I've developed.
I visited an ENT after I had a hoarse voice for a few months. I was told I have "classic rheumatoid nodules" on my vocal cords. And that the only solution is to find a medication that might reduce the nodules. I was asked if I "use my voice for my occupation" (who the hell doesn't??) and as long as I wasn't "losing pay" due to the disability, there wasn't much to do except wait.
I haven't found much online regarding this issue. Anything I have found is studies that call this symptom "rare" and "not permanently debilitating".
I used to love to sing. Everything I did was accompanied by silly jingle I came up with, or a song snippet that fit the assignment. I used to be pitch perfect. My range wasn't impressive, but I ***LOVED*** my voice.
No one in my life understands the devastation I feel about losing this part of myself. People at work always ask if I'm sick, or have a cold. My SO always asks me to "speak up" or gets frustrated that he can't hear my raspy replies. I don't sing at all anymore, because the only notes I can reach are the lowest ones in my range. I'd rather be completely mute than this horrible, chronic-cold, clear-your-throat, what? huh? speak up? fucking useless voice I have now.
I feel like an entire part of my identity has been stripped away from me in a single, swift motion. No one I've talked to has understood how ME my voice was. I miss it. And I have no idea if I will ever get it back.
Has anyone here experienced something similar or have any advice / suggestions?
Also, my ENT had a list of suggested treatments: 1. wait until one of the RA medications reduces the size of the nodules (hasn't happened in 1 year with 3 different medications), 2. do vocal work with a speech-pathologist, 3. Do steroid injections directly into my vocal cords (could take up to 5 times to see any sort of change) 4. have surgery to remove the nodules (not recommended, since the nodules are most likely to return and the scar tissue from surgery can do more lasting damage). I'm horrible at waiting and now at this point I don't know if I will ever have my "normal" voice back or not.
Hi
. It is understandable to be horrible at waiting when it comes to certain things and I think voice issues would be pretty high on that list. There are actually a number of RA related issues that can impact the voice (see: this article https://pmc.ncbi.nlm.nih.gov/articles/PMC3707215). One of the more common is the cricoarytenoid joint and our patient leader Wren wrote about it here: https://rheumatoidarthritis.net/living/a-hoarse-of-a-different-color. I mention all this because, while you have been diagnosed with nodules, I wanted you to be aware of anything else that could be a contributing factor in voice issues. Your doctors should be able to answer any questions regarding your case. Concerning the nodules, the first article I linked to discusses them and treatments. They pretty much mirror what your doctor said. It sounds like you are having difficulty controlling other symptoms as well. Mind if I ask what medication you are no now and for how long? I ask because it can take a while for medications to have an impact (besides of course the trial and error of finding one) and hoping one that starts controlling the RA can, as #1 on the list, help with the nodules and whatever else might be happening. Hopefully others will chime in with their experiences. Best, Richard (Team Member) 
Hi,
!
I can't add much to what Richard shared, but please know I empathize with how you are feeling. I don't deal with RA nodules, but I used to love my own singing voice (though I never had perfect pitch, sigh). I was no great voice, but I did well in choral programs and the like for years.
Then, due to stupid choices on my part, I ruined my voice. I still like singing and make up songs about everything (my kids liken it to being trapped in a never ending musical), but my voice is not the same. No one finds it pleasant, which really doesn't help since the kids already feel trapped in a Rodgers and Hammerstein-esque nightmare.
I know what a horrible loss it is. RA is already bad enough. But, when it comes for a piece of your identity, part of what brings you joy, well. That hurts. DEEPLY.
I think working with an SLP is not a bad idea; as they are experts and I have always been amazed by their knowledge and understanding they bring to their craft. But, most SLPs will tell you that you need to treat the underlying cause of your nodules to see the best results. And only you can decide what option is best for you.
Please know there are members of the community that can relate and that understand what you are going through.
Hugs, Erin, Team Member.
