CLL since early 2015, mostly W&W: About 6 weeks ago I had a sudden change in my voice - I lost the upper 3rd of my vocal register all at once. At the time I was experiencing very enlarged lymph nodes in the neck/below the jaw and right in front of the ear. This appeared to me to be fall out from a sinus infection back in April that really knocked me for a loop and was treated with antibiotics. So I started doing hot/cold compresses on those areas and had such a marked reduction in their size that I felt no need to continue. My hemotologist confirmed the 50% or more reduction. Oddly, however, right after the nodes went down, I lost my voice. My ENT confirmed that I have swollen lower tonsil tissue. I was surprised because I had my tonsils taken out when I was 7 years old, but she explained that this is tissue further down the throat. So it's clear that this is causing the loss of register, mostly in my singing voice. Just curious if any one has any thoughts about what I could do? I've been doing hot/cold shower massages in the lymph/neck areas, hoping that they would help but I see little improvement. I am doing all the good alternative things to keep my immune system up and I honestly feel great in every way. So the vocal thing is the only symptom of my CLL condition. btw - my last WBC went up to 26.5K from 15+ just 4 months earlier.
thanks so much and so grateful to this community
John
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jawdfs
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You don't say where you are in the world, so I don't know how available specialists are for you, but, if possible, I would start by seeing a laryngologist (aka otolaryngologist) about your voice. If you are near a university with a good voice department in their music school you might connect with someone there to ask for recommendations. In the past I have suddenly lost my voice completely due to viral and bacterial infections. On one occasion it was due to acid reflux. My ENT missed that diagnosis. My laryngologist, who was known as "the singers' doctor" didn't. Very distressing, as I was teaching and am a singer. My voice came back quickly once I was properly diagnosed.
The fact that your issue came on suddenly makes me think one of these is a possible cause - maybe an infection of the lingual tonsils, which are not generally removed. Tonsils can also grow back.
There are other possibilities, some easily treatable, some more serious, but it is important to find out what is going on. You don’t want to assume that CLL is the cause, and miss something serious. My basic rule of thumb is that if I keep my mouth shut for three days and there is no improvement I need to see a doctor. I hope you find the right doctor to help.
I just saw Yonkers, New York, in your other post. I’m not terribly familiar with New York. You might have to travel some, but I’m sure that there are some top laryngologists there. You might check with the voice departments at Juilliard or the Manhattan School of Music.
@lankisterguy might be able to advise you about what might be available through NY Presbyterian Hospital (s? - I heard that the two merged) . They both have very good CLL Departments and the ideal would be to have a CLL specialist and a voice specialist working on your issue together in the same facility.
I don’t know how much swelling of the lingual tonsils, if the lymph nodes are the issue, would affect the ability of the vocal cords to vibrate. It’s easy, once diagnosed with CLL, to blame most health issues on the CLL, which can get us in trouble.
I learn so much from here when I'm not even looking for answers! I too had throat problems - I lost my singing voice, it would just break and even if I talked for too long it would become hoarse. I was referred to ENT specialist who noticed that I had some enlarged lymph nodes and ordered an MRI. That was how I found that the CLL was progressing. Fast forward 18 months...I'm now on Ibrutinib, lymph nodes disappear, voice returns. However, after identifying that the stomach pain I was having could be a is reflux, I was also prescribed Omeprazole, which I started at the same time as the Ibrutinib, almost three months ago... So now I'm wondering was my voice loss due to the lymph nodes or the acid reflux? Definitely worth checking this out jawdfs...and good luck.
Thanks so much for your email! btw - I just made an appointment with Dr. Sulica at Weill Cornell (Sean Parker Institute for the Voice) and am in the process of making an appointment with Dr. Lamanna at Columbia Prep. If it's acid-reflux, there are natural means that help - 3 or more glasses of cabbage juice/day for ex. Also, cucumber and celery juice. The problem would be almost everything else can keep the acid reflux going - I know, as my wife has it.
LOVE this community as well! I am seeing my ENT guy today, had an MRI on Monday for very painful node/lump under jaw, throat area. The other side is lumpy but this is super painful. I too get hoarse, lots of sore throats etc....My oncologist unfortunately had no answers and is not concerned but I guess that is a good thing? LOL His nurse is the one that pushed him for the MRI - God bless nurses! Thank you for your post!
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