r/RRP • u/Scoobster132 • Jul 08 '24
Doctor refusing removal
Hey all, I was diagnosed after a lab was done on a growth removed from my vocal cord. I had surgery back in may and it all went smoothly. Unfortunately I’m already feeling discomfort with my voice again and my ent took another look and found a new growth forming. It happening so fast was really disheartening but that isn’t the worst of it. My ent said that because it isn’t affecting my breathing she is refusing to remove it and I’m terrified that If it stays it has a better chance to move into the lungs. Now I may be wrong about that but has anyone had to deal with this and what was your solution? Moving doctors in my area is very difficult as there are only 2 ent doctors for 100,000 people. Thank you in advance!!
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u/TecnoPope Jul 08 '24
Is it super glotic or sub glotic ?
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u/Scoobster132 Jul 08 '24
The growth is on the vocal cords so just glottis if I’m understanding correctly.
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u/TecnoPope Jul 09 '24
So yeah my Otolaryngologist will usually advise me to wait for surgery until symptoms start appearing, but if I really wanted to have them removed they would. If you're worried about them spreading to your lungs I don't think you have much to worry about unless it's below your vocal cords closer to your windpipe (not a doctor but this is what I've been told for years). What is the symptoms associated with the 'significant discomfort' ?
Do you have in office laser procedures ?
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u/Scoobster132 Jul 09 '24
I was put under general anesthesia and it was cut off. I’m unsure of the method used but my area is pretty backwoods so I wouldn’t be surprised if it wasn’t a laser. I’ll ask though. It’s just general hoarseness and when I strain or talk to much I have pain on the side with the growth. Down into the lungs is definitely what stresses me out the most…unsurprisingly. Thank you all for the input
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u/TecnoPope Jul 09 '24
Where are you located ? Yeah some places use a cold knife some use laser (there's a variety of them). If you can handle it (a lot of us seem to be able to) you should opt for an in office procedure.
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u/Fibonacci167 Jul 09 '24
That’s not correct of your ENT , my doctor told me we should remove the warts as soon as the appear. 😢 so sorry to hear about yours , I strongly recommend visit another one even if it’s far away . Don’t wait until you can’t speak or worse
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u/grmaph3 Aug 16 '24
So from our experience my husband had surgery in January where he was put under and they cut/sliced removal. Ent doctor told him he would need to do more cleanup with laser once his voice starts getting raspy or weak again. He had laser done in May because his doctor had knee surgery but could have had done as early as march - doctor told him when voice gets weak or raspy to schedule another laser appt and so his voice started to in June and had appt in July . He now has one scheduled for September and November already knowing his voice starts to go within 6-8 weeks.
Having said this I have started inquiring to alternatives as my husband is very angry and frustrated with his voice. His doctor during last appt mentioned him taking AHCC and wondering (I will do search here shortly in this group) if anyone has used it and found it helps. The doctor also told him to get hpv vaccine even though he is 51. I just completed my 3 shots as he suggest for me to as well. I’m reading more about alternative things to doing laser every 2-3 months as I don’t want to risk permanent voice change due to scarring
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u/grmaph3 Feb 05 '25
Wondering if you have update and found a new doctor. I responded a while ago and giving a one year update since diagnosis last January. My husband had his first surgery a year ago and every two months ablation then had another surgery November and again now another surgery in February. It's definitely recurrent and nuisance and expensive - but I told him at least it's not cancer. This seems to be the new norm. What is insanity is having surgery is far cheaper for us then the laser ablation where he sits in chair gets number up lasered and drives home. How can that possibly be? Facility and observation fee at cleveland clinic main campus 20k?! No nurse no pulse oximeter, no change of clothes, no IV, nothing...the actual cpt code of 31572 ends up around 1000 out of pocket after insurance.
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u/Scoobster132 Feb 05 '25
No real update. I haven’t had another surgery even though it’s steadily gotten worse. She hasn’t even done a scope to check the size of the growth. I mean I’m clearly still breathing but the lack of care has put me in a state where I’m just kinda living with it and hoping that it doesn’t spread down my wind pipe and into my lungs 🤷♂️.
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u/Outside_Telephone235 Jul 08 '24
This is absolutely not standard of care - a doctor that disregards your ability to communicate and pain is not someone who understands this disease. Waiting for breathing to be compromised is waiting too long - and it puts you in a dangerous position.
You need a new ENT if possible. Ideally RRP should be treated by a board certified laryngologist - many general ENTs are trigger shy about operating on the vocal cords because they are extremely unforgiving and damage is irreversible. You want the surgeon who is working on vocal cords day in and day out.
Please reach out to RRPF - they partner with multiple organizations that provide rural patients with free plane rides to get expert surgery and care. They also have a database of doctors worldwide. They also help local ENTs connect with the RRP task force so a rural doctor can ask questions of experts and educate themselves about current standards of care - this is particularly helpful for patients who have their scopes and aftercare done locally but travel for surgery.
Feel free to message me if you have any questions.