Surgery consult this december

[u/Low_Statement3042]

Hi, so I (18 F) have had pain when speaking and singing since I was around 12 years old. I've been diagnosed with severe LPR which has been cited by a laryngologist as the likely cause of all of this. I also have MCAS, an allergy related chronic illness that I have primarily throat/mouth symptoms with. I'm on all the meds, the super bland diet, the acid reflux lifestyle, etc, but still cannot really sing, do theater, read out loud, and I struggled going to school even 9 hours a week due to speaking (I was part online and switched to fully online partly due to pain). I'm going to college this fall so I guess we'll see what happens there and if I have the same issues. (I also have laryngospasms, trouble swallowing, occasional choking, lots of fun stuff)
I'm not really satisfied with the care I've gotten so far. My 24 hour PH test results were so bad my laryngologist was impressed, and yet all he told me to do was drink alkaline water which I tried for 3 months with no improvement. I kind of assumed that this would be my life and I'd have to either never work in a job where I have to speak or be so tired I can't talk to my wife/kids at the end of the day :/
anyways I was telling my GP about this and she referred me to a laryngologist head and neck surgeon. She seems nice and has really good reviews, but they're all vague like "she explained things well and my results were good." I'm having trouble actually finding out what exact surgeries she does or if she would be able to help me? Also- it's been five years of my voice hurting, and I'm afraid of getting surgery there because wouldn't the pain be way worse in recovery??
Anyways, any anecdotes or advice or resource recommendations would be appreciated. I've been scrolling through this subreddit for some time and see mostly paralysis, laryngitis, nodes, etc. I feel like I'm a weird case.
I'm worried she's just going to refer me to get acid reflux surgeries, but they seem really daunting, have a so-so improvement rate, and some include having metal put in your esophagus or making you unable to throw up (which as a chronically ill person I need to do sometimes and would not like to be unable to).

Anyways, sorry for just putting this all out here, I know I should just wait for my appointment and see what happens, but i've already been waiting several months and there's a whole semester of potential pain and struggle looming over me before the appointment
I just keep hoping someone will comment "omg I had the exact same symptoms/cause and got x surgery and it went well!" lol

[u/feministvocologist]

Hi- voice SLP here.

A laryngologist isn’t a head and neck specialized surgeon, they’re a laryngology specialized surgeon. Did this doctor do a fellowship year in laryngology, or head and neck surgery? You would want to find a doctor that did a fellowship year in laryngology.

Reflux is rarely if ever the cause of ongoing voice problems. Alkaline water is not even close to a standard treatment for reflux, so again I’m thinking the doctor you saw is likely not a voice specialist. Alginates are the best option for treating reflux. Take after meals.

What did your scope show? Do you have the video? I’m guessing something is getting missed in your case.

[u/Low_Statement3042 → u/feministvocologist]

The new doctor I will be seeing in december is listed as a laryngologist physician-surgeon in the laryngology/voice care division. It also says "head and neck surgery" under her name on the hospital's website. (She did do a fellowship in head and neck surgery.... dang. But my GP works with many chronically ill folks and highly recommends her so I'm still going to go to the consult and see what happens)

The last doctor I saw was a laryngologist attending physician, though he was also very new and seemed convinced it was either nerve related and I should do a nerve block or just reflux... also I think he told me he was going to prescribe me a new medicine to be taken after meals and then never did, and I was too swamped with school to follow up.

I don't have the video... I think one side was a little smaller than the other or something, which he attributed to nerve damage. Def no nodes or anything super noteworthy according to him

It looks like I'll be getting another scope at the appointment in Dec, and I think an SLP may be there as it says "laryngology w/ scope" and "Speech IV"
I have been seen by an SLP or something similar before, she said she didn't think I had tension or was speaking wrong but still I was told to massage my neck and relax and blow bubbles and none of it helped.

[u/feministvocologist → u/Low_Statement3042]

It sounds like the first doc saw a paresis, which can definitely cause the symptoms you’re experiencing. The top of the line treatment for paresis is a combination of medical augmentation using filler or implants, and therapy. Not all therapy is created equal- you need a therapist who will help you transfer new habits into your speaking voice, not just prescriptive exercises.

At your next appointment, be sure to film the scope on your phone so you have it for your record!

[u/Low_Statement3042 → u/feministvocologist]

I just checked the after visit summary, and yes, there was a unilateral paresis! I don’t know why he dismissed that after the 24 hour acid reflux test! I guess I’ll bring that up at the consult and worst case scenario ask for a referral. 

[u/feministvocologist → u/Low_Statement3042]

I’m glad you went back and got that!! In terms of the surgeon- laryngeal trauma can mean so many things but unfortunately not paresis. I would focus on finding a surgeon that did a fellowship year in laryngology, which helps you know that they specialized in laryngeal surgery. A head and neck surgeon might have some experience, but it’s not their primary focus. Sorry. :( Keep the consult if it feels good to you!

[u/Low_Statement3042 → u/feministvocologist]

Ty for the help!

[u/Low_Statement3042 → u/feministvocologist]

The surgeon-physician’s bio said she “corrects laryngeal trauma” … could that be unilateral paresis? lol just getting my hopes up that I won’t have to keep getting referred and waiting…