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My VFS with Dr. Haben

Started by GeekGirl, July 11, 2016, 09:02:58 PM

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jollyjoy

Hope you will have a great recovery! Sleeping on 2-3 pillows helped me a lot to prevent coughing at night time.
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GeekGirl

Quote from: jollyjoy on July 22, 2016, 11:25:48 PM
Hope you will have a great recovery! Sleeping on 2-3 pillows helped me a lot to prevent coughing at night time.

Thanks jollyjoy! Yes, I've been trying that, experimenting with keeping my head elevated versus my whole upper body elevated, kind of like laying on a lounge chair. I'm done with my hydrocodone this morning and the last of my steroids is tonight. I bought some Delsym to lessen any future coughing.
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anjaq

So sad, Synatura is only availabe in Korea. it was so good against rough thoat and coughing...

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GeekGirl

My one week update: I started taking Delsym after the 5 days of hydrocodone for cough suppression. Delsym makes me really tired and dizzy. I can't seem to stay awake past 10pm and I wake up around 5:30am. I coughed (not willfully) single coughs 24 times in the past 7 days (a little more than 3 a day) and accidentally tried to speak 8 words (about 1 a day). No sound came out during any of those times. I noticed that a lot of heavy laughing the other day made my throat feel sore. I'm not supposed to speak for 30 days. For a talkative person, this is harder than you can imagine. I've been using pre-written phrases, typing into a notepad, and a text to speech app as my communication devices.

I was told to not speak for 30 days because the first time I did the surgery, I was told to not speak for 7 days (I did 10) and the stitches didn't hold so Dr. Haben concluded I was a slow healer. Thinking back to the first experience, I was hacking up (coughing severely) a lot the moment I was awake from the anesthesia and I did vomit a couple of times in the hospital so that probably didn't help. This time none of that happened so I remain optimistic.

There's a slight tinge of soreness in my throat. It was a little sore after the surgery a week ago so the soreness is a lot less now, but then again I am taking a 200mg ibuprofen pill 2-3 times a day to manage pain (I suspect I won't need this soon). I'm sucking on cough drops all day long and my appetite is very good. I haven't had a Pepsi in over a week (I love Pepsi) and will try to follow Yeson's practices of no spicy food for 1 month, no caffeine for 2 months, and no alcohol for 3. No caffeine in my body could be contributing to my going to bed so early every day.

Anyway, I'm following the rules more carefully for this surgery than any others I've had. I really want this to go well.
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kwala

Glad your recovery is still going well.  Giving up Pepsi (and yes, pepsi specifically, as I prefer it to Coke) was one of the hardest parts of recovery for me, too! 
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GeekGirl

Quote from: kwala on July 29, 2016, 11:48:07 AM
Glad your recovery is still going well.  Giving up Pepsi (and yes, pepsi specifically, as I prefer it to Coke) was one of the hardest parts of recovery for me, too!

Thanks kwala!

So one bit of an unfortunate thing happened... I saw a mouse in my condo two night ago, got startled, and screamed "Mouse!" to my partner. It came out as an indistinct "Eeeeeuuuurrrrrrrrggghhhh!" sound. I surely hope that that didn't cause my stitches to break. I've been thinking about it yesterday and today and kicking myself. I didn't feel any sharp pain after I "screamed," but I was sad and upset about the prospect of the stitch popping. My partner kept saying "you would feel it" if the stitch broke and tried to keep me calm. She also said that the stitches are designed to hold for a month before dissolving, but surely the stitches can tear through the vocal folds with a scream? Argh... I guess Dr. Haben would know (I sent him an email).
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GeekGirl

Dr. Haben replied and said that, true to what my partner had thought, if the stitches had ripped, I would've likely felt it. He said to not worry about it now and just things heal. Okay, so here are some reasons why I'm hopeful.

1. At about this time the first time I had the surgery (which failed), I was able to talk. Almost clearly but with raspiness. This time I'm not able to make much sound except light whispers and that "Eeeeeuuuurrrrrrrrggghhhh" sound.

2. I remind myself to shut up and relax and it's basically working.

3. The little lump feeling in my throat from the previous weeks is going away little by little.

The big scare is what happens if I'm never able to speak again? I know there are technologies out there to fix this. When I was little, I knew a woman in my neighborhood who lost her voice and had to use a metal instrument that looked like an aerosol spray can to talk. She had a metallic voice. Is that my fate? (hope not)
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kwala

Well, I can tell you that you are probably right about the stitches not popping due to the fact that you are unable to make much noise.  Your web is probably formed already.  It does take time, however for swelling to come down and the vocal folds have to sort of readjust to their new shape.  As for losing your voice forever, I wouldn't panic.  You know by now what happened to me, but I am an exception.  The odds are still very much in your favor, so just try to be patient and don't judge your voice too harshly until 2 or 3 months have gone by.  Most people panicked when they couldn't speak at all during the first month and 9/10 of them turned out just fine!
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GeekGirl

Quote from: kwala on August 01, 2016, 02:31:08 PM
Well, I can tell you that you are probably right about the stitches not popping due to the fact that you are unable to make much noise.  Your web is probably formed already.  It does take time, however for swelling to come down and the vocal folds have to sort of readjust to their new shape.  As for losing your voice forever, I wouldn't panic.  You know by now what happened to me, but I am an exception.  The odds are still very much in your favor, so just try to be patient and don't judge your voice too harshly until 2 or 3 months have gone by.  Most people panicked when they couldn't speak at all during the first month and 9/10 of them turned out just fine!

Thanks kwala :) I'm just fearful that I'm that lone 1% or 4% or something like that. Dr. Haben said something about 96% success with the web forming, so that means out of the 300 or so surgeries, it didn't work 12 times (of which I was one of those).

I remember the first time he announced my surgery failed. He said "1 out of 50 people have problems". That was back in 2013.

I remember you said that your new ENT doctors said that 75% of the vocal cords were covered. Does that mean you had trouble breathing? That would suck in my case with all of my allergies. Oh, yeah, that's another thing I have to fight, too. I have severe allergies and am taking Xolair once a month (allergist prescribed) to combat it.
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kwala

Quote from: GeekGirl on August 01, 2016, 02:38:47 PM
Thanks kwala :) I'm just fearful that I'm that lone 1% or 4% or something like that. Dr. Haben said something about 96% success with the web forming, so that means out of the 300 or so surgeries, it didn't work 12 times (of which I was one of those).

I remember the first time he announced my surgery failed. He said "1 out of 50 people have problems". That was back in 2013.

I remember you said that your new ENT doctors said that 75% of the vocal cords were covered. Does that mean you had trouble breathing? That would suck in my case with all of my allergies. Oh, yeah, that's another thing I have to fight, too. I have severe allergies and am taking Xolair once a month (allergist prescribed) to combat it.
To be honest, I didn't notice any issues breathing, but after the second surgery to remove part of the web I noticed a very slight change, like I had a slightly bigger space to breathe into.  I grew up with asthma though and so far any changes I've noticed have been so so very slight that they are almost not worth mentioning- so I wouldn't worry about that.  It was a concern of several doctors I've seen though, and they had me do tests with a breathing tube and all said I was still breathing normally even with the super web blocking so much of the airway.
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GeekGirl

Quote from: kwala on August 01, 2016, 10:07:03 PM
To be honest, I didn't notice any issues breathing, but after the second surgery to remove part of the web I noticed a very slight change, like I had a slightly bigger space to breathe into.  I grew up with asthma though and so far any changes I've noticed have been so so very slight that they are almost not worth mentioning- so I wouldn't worry about that.  It was a concern of several doctors I've seen though, and they had me do tests with a breathing tube and all said I was still breathing normally even with the super web blocking so much of the airway.

Another point I've been thinking about is I wonder if not doing the CTA versus doing the CTA affects the healing process of the web. After the CTA, aren't the two muscles that normally open up and close together when you make sounds always in a contracted, or pinched, position? Because these muscles are stuck in this position of little movement, there should be less agitation on the web. Despite all of our best efforts to not use our voice, everyone always makes the random cough or sneeze or whispered word. That probably agitates the web, especially for those who haven't had the CTA.

Age is certainly a factor in the healing process, too. I'm older than a lot of Dr. Haben's patients (I'm 48) so my healing is certainly going to be slower than a 21 year old. Maybe Dr. Haben was a little too quick in telling me (after my first surgery) and others my age that "Hey, you can talk after a week of voice rest!" I know we're all anxious to recite The Rainbow Passage to show our results to each other, but saying all of these Rainbow Passages probably agitated our vocal cords when some of us should've been taking additional days or weeks of voice rest. That's why I think the one month vocal rest makes sense for me, but I really wasn't prepared for this. I thought I might be able to speak after maybe two weeks. I think my workplace has been very patient and understanding so far and a lot of people have adapted to my new form of communication. I've found a lot of strangers to be very kind when interacting with me. It's like they see I have a disability and take extra steps to be extra nice to me. Some even think I'm deaf and mute instead of just mute. Occasionally, I meet someone who seems impatient when interacting with me, but that's rare.

My week 2 update: A little less coughing and accidental words spoken per day than the first week. Of the spoken words, they came out as nothing more than a whisper. I'm using my text to speech app a lot more. Yesterday, I answered three phone calls using my text to speech app, two for doctor's appointments and one to order merchandise (a pool cue). I even spelled out credit card information using the app. I couldn't believe it worked. My colleagues sitting next to me were all amazed that it worked. This made me feel a lot less helpless, because the days prior to that I've been getting my colleagues to answer the phone for me and I felt guilty doing that, like it wasn't their job even though they all work for me.
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Dena

I was nearly two weeks before the swelling went down enough that I could make noise and when I did, it didn't sound very good. I suspect my thread broke around the 5 week mark but I didn't feel it or notice a change. My only proof was a tiny bit of thread that came up in a cough that was less than an eighth of an inch long. Anyway while I was still non speaking, I had a UTI and it was funny how in the hospital they were using sign language. I had to write that I could hear but just couldn't speak.

Paper and pen worked best for me as my huge hands just don't work well on my tiny iPhone keyboard. As for the phone, it didn't ring much and anybody who was important to me knew how to contact me by other means. I even set up a separate email address just to be used with the phone as nobody texts me.
Rebirth Date 1982 - PMs are welcome - Use [email]dena@susans.org[/email] or Discord if your unable to PM - Skype is available - My Transition
If you are helped by this site, consider leaving a tip in the jar at the bottom of the page or become a subscriber
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GeekGirl

Quote from: Dena on August 03, 2016, 05:29:42 PM
I was nearly two weeks before the swelling went down enough that I could make noise and when I did, it didn't sound very good. I suspect my thread broke around the 5 week mark but I didn't feel it or notice a change. My only proof was a tiny bit of thread that came up in a cough that was less than an eighth of an inch long. Anyway while I was still non speaking, I had a UTI and it was funny how in the hospital they were using sign language. I had to write that I could hear but just couldn't speak.

Paper and pen worked best for me as my huge hands just don't work well on my tiny iPhone keyboard. As for the phone, it didn't ring much and anybody who was important to me knew how to contact me by other means. I even set up a separate email address just to be used with the phone as nobody texts me.

At work, we have a chat system called Slack that we all use to communicate with each other, so that's what I'm using in place of most phone calls. I've found that the CVS equivalent of Delsym is not as gritty as Delsym and it doesn't make me as sleepy but it's not as effective as Delsym. I start coughing a couple of hours prior to my next 12 hour dose. I think Delsym is probably the best over the counter choice of cough suppresant for me.

My taste buds are finally clearing up such that I can taste things almost 100% now. I've read all these articles about how long anesthesia stays in the body. Some people don't even believe it lasts more than 48 hours in the body, but it sure does something to the taste buds.
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Dena

What destroys the sense of taste is the physical pressure of the instruments on the tongue. Dr Haben was extremely brutal with my surgery and my whole mouth was sore after surgery and it took several weeks for the teeth to stop hurting when I chewed. The first meal after surgery with the chicken and carrots was so difficult to chew that I was ready to send it back uneaten. It took almost 2 hours to eat that first meal. When destroyed, Taste buds take 6 to 8 weeks to regrow. Destroying them is pretty common as really hot spicy food will do it.

As for the cough medicine, I still have my one year old bottle short only one dosage that Dr Haben told me to take before my flight. I should have never take it because I wanted to sleep all the way home and I am so big that there was no room to do that in the small seating space that South West uses.
Rebirth Date 1982 - PMs are welcome - Use [email]dena@susans.org[/email] or Discord if your unable to PM - Skype is available - My Transition
If you are helped by this site, consider leaving a tip in the jar at the bottom of the page or become a subscriber
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GeekGirl

Quote from: Dena on August 03, 2016, 06:17:08 PM
What destroys the sense of taste is the physical pressure of the instruments on the tongue. Dr Haben was extremely brutal with my surgery and my whole mouth was sore after surgery and it took several weeks for the teeth to stop hurting when I chewed. The first meal after surgery with the chicken and carrots was so difficult to chew that I was ready to send it back uneaten. It took almost 2 hours to eat that first meal. When destroyed, Taste buds take 6 to 8 weeks to regrow. Destroying them is pretty common as really hot spicy food will do it.

As for the cough medicine, I still have my one year old bottle short only one dosage that Dr Haben told me to take before my flight. I should have never take it because I wanted to sleep all the way home and I am so big that there was no room to do that in the small seating space that South West uses.

So sorry to hear about your teeth and taste buds!

I love spicy foods, but I've forced myself to cut down a lot on spicy stuff the past two weeks. One day I had something mildly spicy and I paid for it that night with acid reflux. Even mildly greasy foods give me acid reflux. One thing I've noticed,though, is today I had my first sip of Coke in a while (they didn't have Pepsi at the place I ate at) and it shocked my tongue, to the point it felt like it was burning. Needless to say, I'm going to have to cut soda out completely or find a way to dilute it. Yeson says not to drink carbonated drinks for 2 months, so I should probably follow that rule.
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GeekGirl

Oh, so some of you might be wondering why I refer to Yeson so much when I had my surgery with Dr. Haben. Well, I decided that Yeson has the more conservative approach to healing, which is probably what I need, so I freeze framed a video by someone who did her surgery with Yeson and I grabbed the info on Yeson's post-op care info sheets.
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GeekGirl

Week 3 update:

Some random episodes of coughing and some accidental whispering of words here and there. I switched to the CVS brand of Delsym to control my coughing, which was a mistake; it's not as strong as Delsym. I tried speaking a "hello" last Saturday and the pitch was promising. I had to do that because I was getting anxious that I might have lost my voice permanently. Over the past week, the little soreness in my throat gradually disappeared. My partner and I bought a new bed, a Tempur-Pedic adjustable, which has made sleeping much nicer now. No issues with acid reflux even after my wonderful slow-cooked meatball dinner the other night. Except for those few sips of soda last week, I haven't had Pepsi in three weeks. I used to drink five or six cans a day. I feel like I'm almost ready to start my Aikido training again. Last week, I attended an Aikido seminar and just did some basic rolls on an open mat to see how I felt. I felt a little dizzy afterwards, so a little more rest should help.
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GeekGirl

30 day update: Originally, I thought I'd stay silent until August 20, but then I said to myself, "Hey, wait a second, August 19 is my 30 days!" So, without further ado, after a little over 4 weeks, is The Rainbow Passage. Like many of you at this time, my voice is very weak, very breathy, very low in volume, and in its beginning stages of development. Earlier in the day, I had trouble completing full sentences because I felt I didn't have enough strength to complete them. It's like I really have to exert a lot of energy into saying more than 5 words in sequence. After about five words, my voice would go quiet in a whisper like the volume would trail off or slowly decrease from word 1 to 5 and then on word 6 someone hit mute. My throat feels a little sore after a couple of sentences (or partial sentences), I'd rest, and then I'd have enough strength to say another five words followed by whispers.

This is why it was so surprising to me when I got home and I was able to just say the entire passage without the trail off in volume. However, I wasn't speaking as loudly as I was with my customers earlier today (I'm in IT support), so that may have been why. I have a big presentation on Monday that requires me to speak for about 15 minutes, but luckily my colleague will be there to say most of the words and I will just fill in the details.

July 10, 2016 Rainbow Passage: http://vocaroo.com/i/s06fOsABFAiv

August 19, 2016 Rainbow Passage: http://vocaroo.com/i/s1qO1GigAVql
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Dena

Very good for your first shot. It was about 7 months before I was really able to regain my volume but I seem to be very slow at everything so I suspect your voice should greatly improve over the next month. The pitch an inflection sound feminine but the voice is whispery, possibly do to swelling and as you  noted still on the weak side.
Rebirth Date 1982 - PMs are welcome - Use [email]dena@susans.org[/email] or Discord if your unable to PM - Skype is available - My Transition
If you are helped by this site, consider leaving a tip in the jar at the bottom of the page or become a subscriber
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GeekGirl

Quote from: Dena on August 19, 2016, 07:49:41 PM
Very good for your first shot. It was about 7 months before I was really able to regain my volume but I seem to be very slow at everything so I suspect your voice should greatly improve over the next month. The pitch an inflection sound feminine but the voice is whispery, possibly do to swelling and as you  noted still on the weak side.

Thanks Dena!

What I found interesting was when I was ready to speak, I couldn't and not because I didn't want to, but because I conditioned myself not to speak for so long. I was unsure of what I might sound like and what I should say. It's weird when you've muted yourself for so long and got used to other means of communication. 30 days of silence may not seem like a lot for some, but for others who are used to speaking every day, it's a lot. I learned a lot about people in my silence, too. I observed people's reactions to me, a mute. I could tell who had a good heart and who was an impatient ass.

Many of us take our voices for granted and many of us fear that if we didn't have a voice, we'd lose a part of our identity. I'm glad I was able to make the most of my silence.
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