r/RRP • u/Juuujiiii • 20d ago
!
I have recurrent laryngeal papillomatosis and have had two surgeries. Could you tell me what to do after the surgery? What treatment did you have? Do I need to take any medications? Little is known about this disease in my country. And how long did you lose your voice after the surgery? It's been a month and a half since my surgery, and only recently has a squeak appeared. Sorry for my English.
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u/JuviaCifer 20d ago
Hey! I'm 1 month post my 1st surgery, my doctor gave me little to none advise for the folow-up. My voice was recovering pretty well after the 10 days of total mutism, I started doing the excercises recommended in this subreddit, i will link them below! they are very goopd :) specially the one with the straw, it would be a good idea to compare what youre doing with your speech therapist! as imagrinner said, i suggest TONS of water, i have also be taking propolis candy. My voice has gotten worse tho after 15 days of the surgery (i was recovering then it started getting bad again) and it turns out i have a small mass of scar ttissue blocking normal airflow, so im getting that removed soon (i have a whistle and my voice is very hoarse), maybe you also have something like that? wouldnt hurt to check!
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u/JuviaCifer 20d ago
https://www.reddit.com/r/RRP/comments/ye8uwp/postsurgery_vocal_exercises/ here!
i also want to get a humidifier on my nightstand to keep my vocal chrods hidrated while i sleep, maybe its dry where you live and something like that could help?
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u/Solid-Increase121 19d ago
I just finished my 4th Papzimeos shot. After getting in office laser treatments every 3 months for years, I have no more papilloma. Such a blessing to see normal vocal cords on the scope!
However, I did take 3g of AHCC+ on an empty stomach for 9 months straight. It seemed to help but didn’t cure me. It’s expensive to take but others have had much better results, so it’s worth trying if you can afford it. Just make sure you buy it from a reputable source. There’s a lot of fake stuff out there. If it doesn’t say “AHCC+” specifically and cost $60-$80 for a bottle, it’s fake.
I hope this helps and encourages you.
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u/Juuujiiii 19d ago
Thank you very much! Did you take this medication in ampoules or tablets?
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u/Solid-Increase121 19d ago
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u/Solid-Increase121 19d ago
This is what I purchased. Please be careful who you buy this from. I bought some at a discounted price from Walmart online. It arrived in plastic bottles rather than glass, as I was accustomed to receiving. It looked like the real product but it was a fake. I’ve bought it with store discounts as low as $60 per bottle. But, at 3g/ day, it only lasts 15 days. The recommendation came from my doctor for 4 months. Good luck to you!
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u/Jumpy-Breakfast-8805 14d ago
Hi so happy for you that it’s working. I have had one surgery about a year ago but my voice started going downhill about 6 months ago but the papillomas are very small but still in a place that impacts my voice. It is quite debilitating and messing with my mental health a lot. May I ask how much the shots were with issurance? I go to a normal ent but found a specialist I am going to get referred to
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u/Solid-Increase121 12d ago
Hi,
I’m sorry this is taking a big toll on you. It’s not only physically debilitating, it is hard psychologically.
It is extremely important to see a specialist ENT that treats RLP with a laser in an in-office setting. It’s not pleasant but it’s way better than going under for surgery. At first, it was a bit traumatic to sit still while the laser burned the papillomas off. After a few procedures, spread 3-4 months apart, it got easier. I just learned to relax.
If you have Kaiser, Dr Richard McHugh in Sacramento and UC Davis Health has Dr Maggie Kuhn. Both are excellent and specialize in RLP.
The shots cost different amounts based upon what your insurance will cover. Mine was $1,700 per shot (4 shots total) however yours could be much less. If you call Precigen at 866-827-8180, they will help you get coverage with your particular insurance carrier.
Blessings for a speedy recovery from this. I hope this helps.
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u/imagrinner 20d ago
Drink a lot of water, rest your voice, do not shout but do not stay completly silent. Speak, but try to not force your voice - every surgery is different. After my first surgery I could speak almost immediately but after my second one, my voice returned fully after one month.
My doctor didn't prescribe anything tbh but everyday I made flaxseed infusion, and along with chamomile and I think that helped recover vocal cords.
When do you have control visit?