I was born with a disease called Recurrent Respiratory Papillomatosis which causes life threatening growths on my vocal cords. I've had to have these growths surgically removed since I was an infant and have had over 80 surgeries thus far. I still continue to need surgery every 3-6 months. Due to all this trauma to my vocal cords my voice is kind of weird and I sound more like an old dude who has smoked for way too long than the 21 year old girl that I actually am.

About 5 years ago the anesthesia for one of these surgeries didn't work correctly. I was given the drug that paralyzes you but not the one that puts you to sleep so I was fully conscious yet unable to move throughout the entire surgery. I felt everything the surgeon did, heard everything that was said in the OR (including my doctor asking the anesthesiologist why my blood pressure and heart rate were so much higher than usual), and saw the majority of what was done to me. Obviously, this was pretty rough on me and I have been dealing with some serious PTSD problems since then.

Alright reddit, have at it. AMA about my disease, repeated surgeries, PTSD, or the surgery that went wrong.

EDIT: First of all, you guys are awesome. Much love to you all. Second of all, proof: http://imgur.com/7srkh

EDIT 2: PLEASE NOTE! The surgery that got messed up did NOT take place at Mass General!!!!! I switched doctors and hospitals shortly after my ordeal. I just didn't want you guys getting your pitch forks and torches and heading to Massachusetts. I absolutely adore Mass General and all of their staff.

EDIT: I'm going to bed guys and I work in the morning but I'll get back to you tomorrow evening, I swear!! <3 you all!!!

Comments: 1478 • Responses: 69  • Date: 

Dollarama540 karma

You must have excellent health coverage

PunkMcKickass1210 karma

I actually don't. Unfortunately my parents and I have had to pay 90% of everything out of pocket. My surgeries cost anywhere from $1,500-$15,000 depending on what needs to be done. Plus we have to pay for hotels and plane tickets (my doctor is in Boston and I am not). Yay non-universal health care in America....

jerrylundegaard581 karma

THIS needs to be higher towards the top. America is backwards as fuck.

PunkMcKickass304 karma


deruke175 karma

Holy hell. Time for you to move to Canada.

PunkMcKickass88 karma

I wish. haha

[deleted]22 karma

Is it really as easy as that? I suspect not. How will you get the visa? Not to mention visas for your family members, or one that supports dependents.

As an expat from America, I can tell you that simply "moving to another country" is not easy. More than that, I weep for those who try to move to America, for immigration more than anything else.

Thirsteh17 karma

8 months and waiting (for the first reply.)

PunkMcKickass7 karma

Aww I'm sorry. I wish I could help!! Are you moving to or from America?

jontss58 karma

Just sue the crap out of whoever did the one you woke up for and you'll be covered for the rest.

PunkMcKickass84 karma

One of the other posters in this thread already did the research for me and apparently the statute of limitation has already passed =( Good idea though!!

Shady_Love228 karma

Did you mention it to anyone in the hospital afterwards? Did you file any malpractice lawsuit?

PunkMcKickass484 karma

I told my parents as soon as I was with them that the anesthesia didn't work correctly and they were shocked. My mother immediately began crying and my dad started storming around the hospital demanding to see the anesthesiologist. When the doctor finally came over and listened to what I had to say he told me and my parents that it was impossible. He was "too good a doctor" to make such a "rookie mistake". He claims that I was dreaming. Even after I could repeat verbatim some of the conversations he had with the other doctors and nurses during my surgery.... My actual surgeon believed me completely and has been very understanding through everything.

We considered trying to sue the anesthesiologist or the hospital but decided it just wasn't worth it. At that point I was having a SUPER hard time talking about the experience/getting through day to day life so I didn't want to have to testify in front of an entire court and such. I did have it put in my chart though that I refused to be under that anesthesiologist's care again and the hospital was understanding and has accommodated my request.

mortaine230 karma

You've had 80 surgeries. Do you often dream during them?

Your parents should revisit the malpractice suit, if it's not too late. Seriously-- civil court is for making sure you have $ to pay for things like a therapist to help you get past this trauma.

PunkMcKickass266 karma

I've never had a dream during a surgery although a lot of times when I'm waking up from them I feel like it's all been a dream. Very trippy, I assure you.

And I've never even thought of trying to sue to get money to cover my therapy (face palm). That's an amazing idea seeing as how each appointment is $150 entirely out of pocket and I go every week.... mortaine, you're the bestest. Many hugs

mortaine148 karma

Bring up both of these points when you file the suit. His claim is that you were dreaming. Sure. For exactly ONE surgery out of EIGHTY you had a dream that was so vivid, you remembered exactly what he and the other doctors said. No sane judge will believe it.

It's not that you need to bring the anesthesiologist's career down. It's that you absolutely deserve to have someone else pay for the expense of treating a trauma that could have been avoided.

It's why the anesthesiologist has malpractice insurance. It's why doctors monitor things like heart rate and bp during surgery, to ask questions and make sure things are being done correctly.

tl;dr: Many hugs back. I hope you get some recourse for what's been done to you.

NeoM532 karma

this isn't exactly something that would hold up in court, or at least you can't advise the OP with the current amount of facts.

mortaine56 karma

Good point.

OP: I am not a lawyer. Get one.

PunkMcKickass72 karma

Haha will do. Seriously though, I haven't really thought about it in a while but after your ideas a lawsuit doesn't seem like such a terrible idea. Like you said, not to bring down his career or anything, just to cover my expenses. Thanks again. You guys are fantastic. See! Reddit is good for something aside from cats and memes after all!!! I always knew it!

BlaineMissouri47 karma

You absolutely should- there is no harm in speaking with a lawyer (most consults are free). It amazes me how many people sue for the dumbest shit, but amazes me even more how many people who deserve the world and more, don't sue. You my dear, are one of those who deserve the world :)

PunkMcKickass29 karma

Awwww psh you're too sweet. You're seriously making me blush! I'll definitely have to look into it. But only cause you told me to BlaineMissouri <3

NeoM59 karma

yep, I'm interested to know why though. did he give the drugs and they didn't work? did he not give them? etc. Needless to say, if he gave them and a weird interaction occurred, I can't imagine a big settlement. Also depends if he's private practice or a hospital guy.

PunkMcKickass25 karma

According to the chart he gave the appropriate amount of the medications. I suspect he just forgot one of them though or gave me way way way way too small of a dose. And I'm not looking for a huge settlement. Just a bit to cover my treatments. Really anything would be better than what I'm currently getting.

BlaineMissouri99 karma

Just want to say how sorry I am about that. This happened to both my father, and his father. Luckily my father woke up mid-surgery and was put back out so it wasn't for long, but my grandfather was awake during a 2 hour complex eye surgery and he was never the same since it happened. :(

BlaineMissouri77 karma

Also, when I had to have a surgery because of the history I was petrified the same was going to happen to me. I spoke in depth with the anesthesiologist about it who told me that I was at one of the best hospitals in the world, and that it wouldn't happen because an alarm would go off if my heart rate / bp significantly changed which would be an indicator I was feeling something. That's really interesting how there was an obvious change in your HR/BP being so high but it was brushed off. Yikes.

PunkMcKickass77 karma

Wow, being awake during eye surgery? I couldn't even imagine that. Give your dad, your grandfather, and yourself all a huge hug for me. I'm glad your surgery went ok though. It's great when medical professionals are caring and do their best to make patients feel at ease. <3

kindabiglie52 karma

Fellow PTSD'er here. I had a shot at court too (and a decent one, including a hefty payout) but decided against it. It's still so hard to talk about, and the thought of going through a court process where half the people involved are there to try and prove you're lying about the most traumatic event in your life? Fucking frightening as hell.

Anybody who hasn't been through this sort of situation can't judge your decision NOT to press forward with suing. I hope nobody's ever judged you for not going forward with it because they can't possibly understand.

It's good that somebody who was there believes you though. When people tell you over and over that you're lying or imagining it for years, it really wears on you.

PunkMcKickass31 karma

Thanks for the support! It's great to hear from someone who really gets it. Hope all is well for you! Feel free to PM me if you ever want a PTSD buddy to talk to! <3

Rex8ever15 karma

Honestly, I'm still traumatized by my csection where they struggled for 15 minutes to get my spinal block to work before putting me under. I was terrified the whole time that they were going to start the surgery... Probably didn't help that I was lying flat on my back and still feeling contractions.

PunkMcKickass11 karma

You poor woman!!! I am reaaaaalllly not looking forward to having children. I wish they could just knock me out when I hit month 9 and cut the baby out when it's ready. I hope you (and your child) are doing well and you never have to go through something like that again!!!

kkkkkttttttt20 karma

I am so sorry for that--I don't know how I would have handled that internet hugs And I absolutely love the pretentious ass telling you he's 'too good a doctor' and 'you must have been dreaming' PATRONIZING DICK!!

PunkMcKickass24 karma

Hahaha couldn't have said it better myself =) I love how everyone who reads my AMA is just as angry at the anesthesiologist as I am! It kinda makes me feel better haha

gaspasser8115 karma

Really sorry to hear about your experience. I'm trying to imagine how this could have happened. I want to state up front that I'm not trying to cast doubt on your story, if you remembered specific conversations that occured and that was confirmed by the nurses and the surgeon then there is little doubt that you were conscious.
You stated below that you remember absolutely everything from the procedure, including induction and intubation, which must have been horrific. Typically multiple medications are given during these procedures aside from paralytics, including narcotics, propofol and/or anesthetic gases. Depending on his choice of anesthetics, there would have to be several mistakes made in order for you to be fully aware. Did you feel fully conscious or drifting in and out? It's possible that the meds given had lost their potency for some reason (storage issues?) but unlikely that all of the meds failed. It's almost impossible to believe that he would have just pushed a paralytic with nothing else (he'd have several syringes in his hand when he was getting the case started and would surely notice that you gave only one out of the 3-4 meds)
This type of event is the reason that alot of anesthesia providers have begun using BIS monitors or other EEG devices to measure consciousness. It gives another monitor for the effectiveness of the anesthetic, but also gives evidence that the patient was unconscious in case you have someone that is falsely claiming intraop awareness. I really wish you the best of luck in overcoming your PTSD, it must be especially difficult with your frequent procedures.

PunkMcKickass4 karma

Thank you for your support!!! I didn't know that OR's have started using EEGs. That's really interesting! I was pretty much fully conscious the whole time, it's not like I was coming in and out of it as if the meds were wearing off. Maybe he just didn't use the full amount of the drug? According to what he said and my chart he gave me the same amount of propofol as I had the previous surgeries so really everything should've been the same. Oh well. Anywho, thanks for your support! <3

galactica216186 karma

What would happen if you didn't have surgery?

PunkMcKickass330 karma

If I don't continue to have surgery the growths can grow so large that they obstruct my airway and I die. Or they can spread down into my lungs at which point they're more or less untreatable and I also die. So at least for now I think I'll continue to go for treatments. Good question though!

IveGotOdds123 karma

I have the same condition (juvenile laryngeal papilloma), though I'm in remission. I've also had countless surgeries, and was considering one more; vocal chord reconstruction. But this scares the SHIT out of me. I know I'm no more likely than anybody to experience this, but wow....

PunkMcKickass186 karma

You should totes PM me! I had some vocal cord reconstruction done a few years ago so I know all about that too! And I understand your fears. I'm a very mathematical kind of person and I remember hearing the statistic on how often anesthesia fails on the radio when I was younger. I can remember sitting in the back of my parent's car and doing the math to figure out what my odds were and basically I discovered that I was fucked. I figured out that because I was having so many surgeries it was pretty much bound to happen to me at some point. One thing you can do though is talk to your anesthesiologist before surgery and tell them that this is one of your biggest fears. Since the surgery that got messed up I always tell my docs now that I'd rather not wake up from surgery than wake up too soon. I think this shocks them so much that they pay a teeny tiny bit more attention when administering medications.

Taremz111 karma

Could you feel pain? If so, on a scale of 1-23, how much did it hurt?

PunkMcKickass227 karma

Yes I could feel pain. And on a scale of 1-23 it was probably a solid 47. Haha Looking back on it I'm not even sure that it was that physically painful. I think it was more the mental "holy shit I'm not supposed to be awake for this" thing that made it seem so much worse. It kind of felt like having your vocal cords tattooed.

The_Oryx106 karma

Tattoo artist here,

I can barely imagine how horrifying it would be to endure a feeling like "having your vocal cords tattooed" for hours. More than an hour of ANY kind of pain is a horrible experience, and causing/receiving hours of pain as a job doesn't make it easier.

You are one tough cookie!

PunkMcKickass53 karma

Why thank you!!! You should totes give me a free(/reduced price) tat!! haha jk. I currently have 3 but I'd LOVE more!!! Particularly something inspired by my disease everything I've been through. Thanks for reading! Hope you enjoyed!!! <3

orangetj35 karma

and nobody noticed your eyes were open?

Superduperdoop78 karma

I think since most surgeries start once you are out cold that she probably shut her eyes but then could not open them because of the paralytics.

orangetj32 karma

oh, i learned something new today

PunkMcKickass81 karma

Yay for learning!! haha My eyes were open but once the drugs all took affect one of the nurses closed my eyes and I couldn't reopen them.

AdtEU201 karma


PunkMcKickass100 karma

Upvote for that most epic "moist" at the end there.

sambluemain29 karma

You said in your first post you saw the majority of what they did to you? Don't mean to be picky just wondering!

PunkMcKickass27 karma

I saw most of the important stuff I guess is what I meant? I mean once I'm intubated and such it's kind of just a bunch of guys standing around me staring at a computer screen. But good catch nonetheless!

DrDeath66676 karma

Thank you for doing this AMA. I'm a new registered nurse and love learning about new things.

PunkMcKickass74 karma

Congrats! Nurses are the best, I seriously don't know where I'd be without you guys! I love you all!! Best of luck in all your endeavors

EnkiduEnkita59 karma

Hopefully this doesn't come off as insensitive, but I'm very curious -- obviously, no obligations to answer if it's too uncomfortable to answer.

What sorts of PTSD experiences do you derive from your experience? I've only heard elaborations of the condition given for people who have suffered shellshock, rape, or domestic violence. Never something like this. Do you have certain triggers related to it, or do you just fear surgery? Or do you have nightmares?

Thanks for the fascinating IAMA, by the way. This is the sort of thing I really subscribe to this subreddit for, I don't really care much for celebrity interviews :p

PunkMcKickass103 karma

Oh it's not insensitive at all. I actually encounter a lot of hardships from the mentality that only vets and battered women can have PTSD so I'm all about educating the public! Often times when I tell someone I have PTSD they tell me I can't have that because I'm too young or I wasn't in the service. Well....tell that to my boyfriend who gets beat up on a nightly basis when I have nightmares. haha I have really really really really awful night terrors, frequent flashbacks, difficulty going out into public, crippling depression, and pretty much anything else you've heard soldiers having to deal with. I do have my triggers as well. Anything that smells sterile or like anesthesia, being pinned down (as in while having tickle fights etc), I actually can't wear super tight fitting shirts cause they freak me out, laying on my back, warm blankets (cause that's what they had in the OR), and certain types of sounds all cause me to flashback/otherwise freak out. Thanks for the interesting question! Keep them coming!

CODDE11750 karma

"Lets make you comfortable!" *is now completely afraid of many things comfortable*

PunkMcKickass70 karma

Yea, sorta sucks right? I mean really, who the fuck is afraid of warm blankets? Also, they make the masks smell like root beer to make you less scared (this was a children's hospital) so now the smell of root beer makes me freak out too. DAMN YOU ANESTHESIOLOGIST FOR TAKING AWAY MY LOVE OF ROOT BEER!!!!

EnkiduEnkita21 karma

That makes a lot of sense, thanks! I wouldn't have been able to draw those examples from my own understandings, but I think I more or less understand the correlation.

Could you provide and insight into how PTSD in this circumstance can trigger depresion? I've suffered from a fair deal of depression due to various ongoing problems in my life, but as far as your case goes, can't you say something along the lines of, "well, that terrible experience is done and over forever"? Or is this a short-sighted understanding of your situation?

PunkMcKickass64 karma

It's been really hard for me to "heal" from this ordeal because every 3-6 months I have to go back in for surgery and there's always the chance that it could happen again or something even worse could happen. I have a super negative outlook on life because I have been "blessed" with this awful disease that only a super small percentage of the population has and then I was "blessed" again by having to go through the experience of being awake through an entire surgery (something only a small percentage of people go through). I guess I just deal with a lot of "why me" kind of things? If that makes sense? Most of the time I just feel generally run down and want to stop treatment and just give up because I feel like it's not even worth trying anymore. The way I see it, no matter what I do I still get shit upon by the giant bird of unhappiness and suffering so why not just give up now and safe myself the extra pain. Sorry, I feel like this is super morbid and I've really tried to make this AMA not make people feel sorry for me but you asked for it!! haha Does that answer your question at all though?

BabyElephantBanana23 karma

Thank you for your honesty, no matter how bleak it may come off. Perhaps being open about it on here will help you heal. So sorry this happened to you. Good luck, and thanks for the great AMA.

PunkMcKickass2 karma

Yea, that's one of the main reasons I decided to do the AMA and it's already proved super helpful!! Thanks for your support!

[deleted]4 karma

i feel the same way. ive got ptsd and a few other disorders. it sucks, but it really does make you stronger!

PunkMcKickass4 karma

I very much agree. Although sometimes it's nice not to have to be strong. PM me if you ever wanna chat/rant/bitch. I'm always looking for fellow PTSD-ers!! Also, your name is probably the best I've seen on this thread yet. haha

MsBostonLee55 karma

Did you tell the surgeon afterward that the anesthesia didn't work?

If so, what was their response?

How do you stay positive with all that you go through?

Thank you.

PunkMcKickass132 karma

My parents and I talked to the anesthesiologist, my surgeon, as well as many of the nurses in the OR. Everybody believed me and felt super bad for me except for the anesthesiologist. Being the arrogant asshole he is, he simply said I was dreaming and that he could never make such a stupid mistake. The other nurses and stuff were really supportive though. Many of them actually cried because they felt awful being right next to me and not even knowing what I had been going through.

lockntwist107 karma

Wow. What a fucking dick. I think I would have gotten violent.

"oh no, I just dreamed I was in excruciating pain for 2 hours and could hear everything the doctors said"

PunkMcKickass333 karma

Yea, I was pretty pissed. I promise you, if I ever encounter that man again I will beat the shit out of him and then tell the police he dreamed it all.

tugtugerin34 karma

He was probably trying to save his own ass by saying stuff like that. He could have been in some serious shit and lost his license for something like that happen, so I'm sure he was scared shitless. I kind of wish you had gone through with suing him so that he got what he deserved (especially after being such a dick about it), but I completely understand why you didn't, and I probably wouldn't have either for the same reasons.

PunkMcKickass48 karma

I wish we could go back and sue him now but alas, it's been too long/I have no proof. I'll just bitch about him on reddit. All you guys agreeing with me that he's a total tool actually is making me feel much better =)

KWiP112349 karma

I'll just bitch about him on reddit. All you guys agreeing with me that he's a total tool actually is making me feel much better =)

This was surprisingly satisfying to read.

Sometimes the best thing someone can do for you is just agree with you.

PunkMcKickass25 karma

Hahaha love it. You're the best! <3

shortman140010 karma

I'm not a lawyer, but my understanding is the statute of limitation on malpractice is years and years.

PunkMcKickass4 karma

Somebody looked it up for my state and they said it's only 2 years (which I find surprising). After talking to all you wonderful people I think I'm going to revisit it though! Just to make sure

pyxis47 karma

No questions. Raspy voices on girls are hot.

PunkMcKickass32 karma

Teehee well thank you sir!!! (or madam) haha

mgearliosus47 karma

This is literally my biggest fear. I've always had a fear of medical procedures, but this takes the cake. I have a heart defect, and because of that I was always told to tell somebody if my chest hurt anywhere. It has, and I've never told. I know it's an incredibly stupid thing to do, but even the thought of surgery paralyzes me from even mustering the courage to tell anybody. I literally think death would be better than this happening. I have no idea why I have this fear, but I do. And I hate it. When I was five I had to have four people hold me down when getting a vaccination for school.

PunkMcKickass29 karma

I totally understand. Since my ordeal I've had some serious issues surrounding going to the hospital for really anything. There have been times I know I really should have gone to the doctor/ER but I just kept my symptoms to myself or would refuse to go if my friends and family tried to talk me into it. I still am scared to death that I'll get in a car accident or have some kind of injury that will force me to go to the ER. I've already planned out the conversation I'm going to have with the first responders telling them if they expect to get me in a hospital they better sedate the hell out of me and practice this talk regularly in my head.

AstroLi41 karma

How long did it take after the surgery for you to begin moving again?

PunkMcKickass76 karma

After the surgery the nurses wheeled me back to the recovery area where I think I actually fell asleep for a while. When I woke up (able to move) I just began bawling. The nurses knew this was totally unlike me so they brought my parents back thinking they'd be able to comfort me. I told them what had happened and they were super supportive and comforting.

marmighty30 karma

How did being intubated feel? Was it unsettling being unable to control your own breathing or was it okay? Did you hear the surgeons discussing anything inappropriate? How have you felt about subsequent surgeries?

Anaesthesia awareness is one of my biggest fears and I never fail to wake up from GAs hyperventilating and terrified because I think I haven't been asleep yet. As I am theatre staff myself and am looked after by my colleagues, this is endlessly embarrassing.

PunkMcKickass44 karma

It shouldn't be embarrassing, you have a totally rational fear. This stuff happens every day plus, surgery is fucking scary, even when it goes right! Your staff should understand that and be prepared to console you when you come out of anesthesia. Having a friendly face there who can tell you exactly what's going on when you first come to has always helped me, maybe ask one of your closer colleagues if they'd be willing to do this for you. Being intubated feels pretty awful, not gonna lie. It feels pretty much exactly like what you would expect it to. Not being able to breath for myself was also strange and frightening. I just felt totally out of control of my own body which really sucked. Since this incident my other surgeries have been awful. So much so that I've considered several times just not continuing treatment (which would ultimately lead to death). Now that I've started to work through my PTSD though they're becoming more bearable.

leetbit28 karma

I'm having my wisdom teeth cut tomorrow and I gotta say, l'm a little more nervous about it now. I can't imagine having to go through something like that, especially on your throat. You're a trooper. Best wishes.

PunkMcKickass33 karma

I'm sure you'll be fine. Just talk to all of your doctors ahead of time, be totally honest with them, and be sure to tell them if you're unsure of anything. I'll be sending good thoughts your way tomorrow! *hugs

thatwhitekid3625 karma

Was it hard to remain calm when you were conscious

PunkMcKickass75 karma

Who said I remained calm? haha I was totally panicked the entire procedure. My surgeon even noted at one point that my blood pressure and heart rate were WAY higher than they usually are which was due to the fact that I was pretty much going through hell. When I realized nobody was going to notice I was still with it I began to try to take stock of my current situation. I remember thinking that really, I wasn't in any risk of death; it was just scary as shit. Then I began focusing all of my attention on trying to blink my eyes. I don't know why but it made sense at the time. I figured if I could just open my eyes the surgeon would see it and stop the procedure. Even though I wasn't able to do this I think just having something to focus on helped me get through it.

x123428 karma

How much of it did you see? I assume your eyes were closed, as you mentioned you focused all your energies into trying to open your eyes. At what point were your eyes open? (sorry not trying to corner you, just wondering which parts of the surgery you witnessed)

PunkMcKickass56 karma

Don't be sorry, it's all cool. I did say ask me anything. My eyes were only open for the very beginning of the surgery. They put the mask on my face with the anesthesia then inserted the IV into my arm and gave me the medicine (or not in this case). I could tell that the hospital staff thought I was asleep at this point cause they're whole demeanor changed. They kinda switched from "let's make the little girl feel comfortable" mode into professional/get it done mode at this point. They all started crowding around my head, attaching the final wires to me and such. As they were about to intubate me (aka stick a giant ass tube down my throat so I could breath) one of the nurses kind of pushed my eyes closed and that was that.

theodrixx51 karma

They kinda switched from "let's make the little girl feel comfortable" mode into professional/get it done mode at this point.

For some reason, this comforts me. Most of the people involved were doing their jobs and doing them well.

PunkMcKickass52 karma

I totally agree. I think it kinda came off as bitchy when I wrote that but that's totally not what I meant. Looking back on it I'm very impressed by how professional everyone was. There was no joking while I was "asleep" and everyone treated me as if I were still conscious.

Jezzikuh27 karma

This sounds absolutely horrific. I'm so sorry you went through this, but I hope you are aware that it makes you a total badass.

PunkMcKickass29 karma

Why thank you sir (or madam?)!! That makes me feel pretty good about myself. haha

unbridged7724 karma

Thank for you for this AMA as I am overly intrigued.

I'm sure this sounds like a simpleton's question, but why have you needed 80 surgeries?

Does your disease have degenerative effects? Can each surgery only be performed under certain time constraints?

PunkMcKickass24 karma

It's not a simpleton's question at all!! The doctors go in and laser off all the growths but they keep growing back. My disease is really rare so pretty much nothing is known about it and doctor's aren't even remotely close to finding a cure so I'll probably be having surgeries to treat my disease till the day I die. When I went through puberty the hormonal changes in my body seemed to slow the growths down quite a bit and I went over a year and a half without surgery (my longest stretch to date) but since then thing's have gotten worse again and I'm back to every couple of months.

unbridged777 karma

I'm so sorry that the growths keep returning. It must be challenging to constantly go through the same process in an attempt to heal. -Do you have any emotional or physical reactions when it is time for you to go into surgery again?

I had to spend a year crowning all of my teeth after they were ruined by the glue from braces, and every few weeks, when It was time to go back, I would start shaking and crying without even really knowing why. This is obviously MUCH less traumatic than your situation, of course, which is why I assumed you might have some type of reaction to the constant need for surgery.

PunkMcKickass22 karma

I usually don't get any sleep for several nights before my surgeries. I tend to stop eating and get really irritable too. The morning of my surgeries I do tend to get shaky and cry. and cry. and cry some more. (just ask my poor boyfriend). It's been tough. Especially since I feel like I don't have enough time between surgeries to properly "heal" from the emotional damage that each one causes. And I dunno, I had braces for 8 years, they can definitely be traumatic too. haha

chiplizard17 karma

How long was the surgery that you ended up being awake for?

PunkMcKickass37 karma

I honestly couldn't tell you. It literally felt like hours and hours. I know that my surgeries usually are around two hours by the time everything is said and done though so it was probably close to that.

monrobotz15 karma

UPVOTE for how many comments you responded to!!!!

PunkMcKickass20 karma

UPVOTE for reading my copious comments!!!!

christgoldman14 karma

I'm so sorry this happened! Ever since I saw Breakdown on Alfred Hitchcock Presents I've had nightmares about similar situations (doesn't help that I suffer from sleep paralysis).

Anyhoo: How do you think your life (re: treatment quality, treatment cost, etc.) will change with the new healthcare act, assuming you're in the States? Do you even think it will change?

Sorry to bring politics into it, but I've never had the chance to ask someone who regularly has surgery more than twice a year. In what I've read so far, I honestly can't tell if the PPACA would make recurring surgeries more or less expensive in the long run.

PunkMcKickass21 karma

Very interesting question! Probably my favorite thus far actually. haha I'm not entirely sure how the PPACA will change everything for me. It's hard to sort through the finger pointing and name calling to find out what the hell the act is actually going to change, you know? I think it should make things easier for my family and I financially but I might not be able to go to the super dooper awesome specialist I'm going to now cause the government might think I'd be ok in the hands of a "lesser" doctor. I have friends in England who have my disease and they get just as high quality treatment as I do but pay pretty much nothing so hopefully that'll end up happening here! fingers crossed

murphys__law13 karma

No questions from me, but I just wanted to tell you that you seem like an amazing person. I've read every single one of your answers and your kindness and positivity is apparent in all of them.

This sure does sound like a shitty condition to have, but on the bright side, you're stronger because of it. The lack of research and knowledge on something which affects you so greatly must be really frustrating though...

PunkMcKickass20 karma

You have no idea how frustrating it can be. I'm not ashamed to admit that sometimes when I see college kids on the side of the road collecting money for cancer research I get a bit jealous. I just wish a teeny bit of that could go into research for my disease, you know? (and I know that sounds super terrible, sorry cancer people out there!!!)
Thank you for reading and posting though!! I love hearing from all you guys! It's great to know I have such support (and one really pissed off guy) should I ever need you guys!! haha

moderndayvigilante12 karma

We want a video/vocaroo of your voice !!!

PunkMcKickass8 karma

I don't have any videos of me talking though!! I was going to record something but then I couldn't think of anything to say and it was just weird. Sorry!! Haha

fazedx12 karma

If you were awake, and feeling everything, wouldn't your blood pressure and heart rate be through the roof? I imagine it would be incredibly stressful and fearful, causing your bp to skyrocket, not just be a little higher than usual?

PunkMcKickass31 karma

I thought that too but after talking to other doctors and anesthesiologists about it I've found out that the paralytic medicine lowers your bp/heart rate to drop some. I also found out that they should have stopped immediately when they noticed my vitals were quite a bit off from what they usually were...

Rawkzr11 karma

My girlfriend got the exact opposite of what you have I think. She got kind of holes in her vocal cords, which makes her sound like she's a heavy smoker. Doctors told her it's the most extreme case they've ever seen, and so far none of the treatments have worked for her so far.

She has to use a lot of energy to just speak, do you find it energy consuming to speak? I better not tell her about this otherwise she'd freak out.

I find you very brave and wish you the best PunkMcKickass!

PunkMcKickass12 karma

Hahaha please don't show her!!! Although feel free to give her my contact info if she wants to talk, I'm always looking for people to commiserate with! Plus I might have some ideas as to what might work for her (I've done tons of research into all kinds of vocal therapies and treatments).
I know exactly what you mean by finding speaking energy consuming though. There are times where I come home from work and am silent for the rest of the day just because I'm tired of forcing sound out of my vocal cords. I also get really awful headaches if I talk too much cause of all the force it takes.

bookemdanno11 karma

The anesthesia for my wisdom tooth also wore off and I felt the dentist use a drill to remove my tooth. I winced and the dentist injected my gums with anestthesia again. I haven't gone to the dentist since.

PunkMcKickass11 karma

I can't say I blame you!! That's awful! I'm so sorry you had to go through that

Hotwings2611 karma

Do you have lots of scars or do they keep opening the same spot?

PunkMcKickass17 karma

I don't have any external scars, they go in through my mouth. So physically, you'd never be able to tell I've had all these surgeries. My vocal cords are completely covered in scar tissue though.

Mashu00910 karma

I'm curious to know how your voice sounds..

PunkMcKickass26 karma

It's really not that bad anymore, I'm just super self-conscious about it. I just sound like I have a cold and am in the first few stages of losing my voice. When I go to stores the cashiers and such are ALWAYS asking me if I'm sick.
My voice used to be much worse but a couple years ago I had some reconstructive work done on my vocal cords that've done wonders.

nirkbirk9 karma

What lead to the diagnosis of your disease? Symptoms, etc.

Also, I'm really sorry this happened to you! I've had nightmares about this kind of thing and couldn't imagine living it. You're extremely brave, especially to be able to come out and talk about it like this!

PunkMcKickass24 karma

Thanks! It's actually been a really cathartic experience thus far (good use of that word, right? Fuck yes) and I think it'll end up being very beneficial towards my recovery from this experience.

My disease wasn't diagnosed until it was almost too late. When I was born I never made noise. I never really tried to babble like most babies and when I cried no sound would come out. My parents took me to a bunch of doctors but they all said it was a phase and I'd grow out of it. Eventually one of the doctors had enough sense to look down my throat (duh) and realized that my airways were almost entirely obstructed. They scheduled me for emergency surgery and the next morning I had my first of too many OR visits. I think I was like 9 months old at this point but don't quote me on that. My disease actually kills thousands of children a year because it goes undiagnosed. I forget the statistic but an overwhelming amount of SIDS (Sudden Infant Death Syndrome) cases are actually caused by my disease. Great question btws!

bigbrainonb-rad9 karma

That's freaking terrible. As they were working on you, were any parts of your body reacting to the procedure, even involuntarily, or were you 100% paralyzed?

PunkMcKickass19 karma

I was 100% paralyzed. Because they're lasering away in my trachea I have to be totally immobilized or else my body could involuntarily flinch causing them to laser a hole in my airway. Which obviously would not be so good. haha So literally everything was paralyzed. I couldn't even blink my eyes to try and tell the doctors something was up although I tried to throughout the entire procedure.

bigbrainonb-rad26 karma

It's mind blowing that they can paralyze your entire body but your heart still continues to beat. That's a muscle too, bro.

groshe77 karma

anesthesia resident here. The paralytics work on skeletal muscle. They don't work on cardiac muscle or smooth muscle (like in the bowels or blood vessels) because those don't have the same receptors on their surfaces.

PunkMcKickass35 karma

Also known as magic. hahaha Thanks for all the work you do and PLEEEEEEEAAAASSSSEEEEE be careful!!!! Or else a few years down the road some girl on reddit will be bitching about you! haha

bigbrainonb-rad6 karma

So if they DID work on the muscles in your bowels, would you poo yourself during surgery?

PunkMcKickass17 karma

I peed myself during surgery once when I was like 8. Dunno if that counts. Also I've never told anyone that. Shhh, it's our little secret reddit...

PunkMcKickass13 karma

I've often thought the same thing. It's magic, I swear.

lockntwist8 karma

I had my wisdom teeth taken out on Tuesday, and I woke up during that, and that hurt pretty bad even though my mouth was numb. I was also pretty drugged, so I can't imagine how much worse it would be to completely sober while having your throat lasered and stuffed with stuff.

I'm so sorry you had to deal with that. Internet hug.

PunkMcKickass17 karma

Sorry you had to get your widom teeth out! I hear that's a bitch. Luckily, I was born without mine (at least I got one thing going for me, right?)

CODDE11711 karma

Wait, born without yours? What? And interesting. You are the best responding AMAer btw.

PunkMcKickass4 karma

Yea, apparently the next step in the evolutionary tree for us humans is to get rid of our wisdom teeth. Which means I am the future of man kind!!! Mwahahahaha Also thanks. Haha

Renfield_3337 karma

How did you pass the time while you were paralyzed?

PunkMcKickass14 karma

After the initial "holy shit holy shit holy shit this isn't supposed to work this way holy shit holy shit holy shit" period I spent most of the time trying to will any part of my body to move. I focused mostly on blinking my eyes because for some reason I thought that'd be the easiest? Still not sure why I thought that. Especially considering during surgery they usually tape your eyes closed.... I have never been that concentrated on any one thing in my life though. Seriously, ever fiber of my being was trying to get my eyes to move even the slightest bit.

jackel34157 karma

This is a huge fear of mine. I'm convinced this will happen to me if I ever need surgery. Insensitive questions: do/did you ever sound like Dr. Girlfriend from Venture Bros. ?

Is your mental reaction dulled at all to what's going on? Or were you full on fighting your body to move the whole time?

Were you intubated? That scares me the most.

PunkMcKickass8 karma

I had to look up Dr. Girlfriend but no, I don't sound like that. haha After all my reconstructive surgeries and such I sound pretty normal now. Think Emma Stone with a cold. A lot of guys tell me it's sexy but I dunno.
Anywho, I was totally with it mentally. I mean, I probably wasn't thinking clearly cause I was panicked but my mental faculties were in no way compromised due to the medicine. I was intubated and it was pretty terrible. It felt exactly as you would imagine it.

As_A_Driver6 karma

Have you ever considered(is it even possible?)having your vocal cords removed? Would that solve the issue?

Would being mute and never having to have surgery again be better than the possibility of being awake through another surgery?

Will your disease get worse as you age? Is this something that might be considered in the future if that is the case?

PunkMcKickass12 karma

Someone just asked the same question!! haha Back in the early 90's doctors tried removing the vocal cords but found that the disease just grew where the cords used to be so they don't do it anymore. Were it feasible though I definitely think I'd go for it. I know a bit of sign language already so I think being a mute for the rest of my life would totally be worth not going in for surgeries anymore.
Hopefully my disease won't get any worse as I age. Most people with my condition actually go into remission when they're in puberty but I did not (because I'm just that lucky). Those who DON'T go into remission tend to either stay the same for the rest of their life or get worse. Sorry for the kind of vague answer but there's really not any good data on this so your guess is as good as mine. Stay tuned and maybe in 10 years I'll do another AMA!

AdtEU5 karma


PunkMcKickass6 karma

Yea, I stay far, far away from that movie. haha It just strikes a little too close to home for my liking. And I'm not entirely sure what happened. My understanding is there's two drugs they're supposed to administer; a paralytic and one that puts you to sleep. Obviously, I got the one that paralyzes you but not the other. They're normally administered at the same time though so I dunno if he just didn't use enough of the one medicine or didn't give me any. According to my chart and what he said, the anesthesiologist gave me the proper dosage of both medications. And I have thought about going to further lengths to get him in trouble and such. The main reason I wanted to sue was not to get money or whatever but to protect others who would be in his care. I still feel somewhat guilty for not taking it further but there was really nothing more we could have done. We talked to much of the hospital staff and they made a note of the incident (supposedly) so I'm hoping they at least talked to him about it. If nothing else I'd think that he'd feel bad for making me go through that and would be a bit more careful going forward.

rumorhazit5 karma

This may have been asked but how old were you when this happened? Sorry to hear about your experience :(

PunkMcKickass13 karma

I was in high school at the time. I think I was 16-17 years old? Somewhere around there. I didn't really start having the PTSD issues until I was 18 though and functioned just fine immediately after the surgery (which is not uncommon believe it or not).

Halostar4 karma

What are the symptoms of your disease, besides the voice? Do you have trouble breathing?
Also, so many hugs. I can't even imagine going through that ordeal.

PunkMcKickass6 karma

My disease isn't severe enough to really cause breathing issues anymore but yes; that can definitely be a side effect of it. The voice is the big give away though. That's usually how it's detected. Good question!

netabuser4 karma

If the growth wasn't remonces what exactly would happen? Would you lose voicw completely or...?

PunkMcKickass10 karma

I'd lose my voice and the growths would grow so big that they'd obstruct my airway and I'd die. Or they could grow into my lungs at which point they're untreatable and I'd also die.

netabuser5 karma

Well that sounds just lovely! Is there any possibility that there will be a permanent cure in the future?

PunkMcKickass4 karma

Hopefully? It's tough because there's almost no funding going into finding a cure due to the fact that it's such a rare disease. My doctor (whom I think walks on water) is doing his best and has some very promising technology coming down the pipe here shortly so hopefully that will help advance the research some.