Also here's a link about speaking from the "mask": http://lifehacker.com/identify-your-voices-mask-to-optimize-your-natural-pi-1578598070
Spasmodic Dysphonia Surgery (SLAD-R) Diary
This blog was created to share my Spasmodic Dysphonia (SD) experience leading up to SLAD-R (Selective Laryngeal Denervation and Renervation) surgery and my recovery.
Monday, October 3, 2016
T+6 Months Post Op Voice Sample
Hi everyone - Please click on the voice sample below for my 6 month update. Overall I am very pleased with the outcome of the surgery.
Also here's a link about speaking from the "mask": http://lifehacker.com/identify-your-voices-mask-to-optimize-your-natural-pi-1578598070
Also here's a link about speaking from the "mask": http://lifehacker.com/identify-your-voices-mask-to-optimize-your-natural-pi-1578598070
Monday, July 11, 2016
T+3 Months (w/ Voice Sample)
Today is July 11th 2016. Tomorrow marks three
months since my SLAD-R surgery with Dr. Berke.
I feel the progress with my voice has slowed considerably since day
1 post surgery. There are still improvements but they have become smaller steps forward each week vs. the prior larger steps day by day. As long as the progress continues I'm perfectly fine with that!
I am still in that squeaky and raspy phase of recovery but my voice has gained some volume since my 2 month update. I thought by now I would
have a pretty fully functional voice (not sounding like I have laryngitis), but I suppose it will take a bit more time
until the raspy and squeakiness disappears.
Expecting my voice to sound a bit more functional at this
point in recovery has caused me to try and push my voice out when speaking in
attempt to eliminate the raspy and squeaky sounds. This bad habit caused me to
create tension in my throat and as a result, for a few days last week, I actually thought
my spasms were coming back. After practicing speaking at different volumes and
focusing on not using any techniqe to push the words out – the choking feeling
in my throat when speaking is no longer an issue.
It seems I only have issues with my "normal conversation" volume. I was in a loud environment this past weekend with friends. When I attempted to speak over the volume of noise – I could be heard perfectly fine without any squeaks or that raspy sounding voice. But once we were back in the car and I attempted to speak at my normal conversation volume, the raspiness and squeakiness returned. So I suppose everyone recovers differently.
As far as my day to day, everything is back to normal. I
still continue my workouts at the gym 5x a week and also eat and drink anything
and everything normally. I am still on paid short term disability from work
until Septmeber 1st. This time away from work has allowed me to heal
comfortably mentally and physically.
I will probably post my
next update in a month or two. If there’s any considerable improvements to my
voice, I will post sooner. Thanks for following and listening to my blog! Message me if you have any questions. Thanks!
Sunday, June 12, 2016
T+2 Months (w/ Voice Sample)
Today marks exactly two months since my surgery at UCLA. It's hard to believe two months have already gone by!
I was very surprised at the amount of progress my voice has made in just one week. A day after publishing my 7 week update, my voice began to sound squeaky. From there it progressively gained volume day after day. Listening to my recording, I feel my voice slightly higher pitched than what it was prior to surgery. However I am completely satisfied with the results so far as I have no spasms. I am back to my normal chatty self during dinner conversations at home. It feels great to finally be able to express what's on my mind. However, if the tone of a conversation with a group of friends escalates to laugher or louder speaking -- it's almost impossible to make myself heard. But I know in time it will come back.
I am noticing techniques I previously used to control my spasms have been retained as bad habits. Well at the time of having SD it was essential but at this current point in time and moving forward I consider them bad habits. Techniques such as varying my pitch when speaking, adding a breath in front of difficult words and elongating words when speaking are no longer needed.
I also notice if I speak in a "monotone" pitch/voice it tends to reduce the chance of sounding squeaky. I suppose sounding boring is better than sounding squeaky and even better than having no voice at all.
My scar doesn't seem to be improving. It's still a little dark despite applying mederma. Hopefully over time it will lighten.
My next update will be at the 3 month mark. Feel free to contact me if you have any questions. Thanks for following my blog!
I was very surprised at the amount of progress my voice has made in just one week. A day after publishing my 7 week update, my voice began to sound squeaky. From there it progressively gained volume day after day. Listening to my recording, I feel my voice slightly higher pitched than what it was prior to surgery. However I am completely satisfied with the results so far as I have no spasms. I am back to my normal chatty self during dinner conversations at home. It feels great to finally be able to express what's on my mind. However, if the tone of a conversation with a group of friends escalates to laugher or louder speaking -- it's almost impossible to make myself heard. But I know in time it will come back.
I am noticing techniques I previously used to control my spasms have been retained as bad habits. Well at the time of having SD it was essential but at this current point in time and moving forward I consider them bad habits. Techniques such as varying my pitch when speaking, adding a breath in front of difficult words and elongating words when speaking are no longer needed.
I also notice if I speak in a "monotone" pitch/voice it tends to reduce the chance of sounding squeaky. I suppose sounding boring is better than sounding squeaky and even better than having no voice at all.
My scar doesn't seem to be improving. It's still a little dark despite applying mederma. Hopefully over time it will lighten.
My next update will be at the 3 month mark. Feel free to contact me if you have any questions. Thanks for following my blog!
Tuesday, May 31, 2016
T+7 Weeks (w/ Voice Sample)
It has now been 7 weeks since my SLAD-R surgery at UCLA.
I finally returned home to Hawaii on 5/15. I took roughly 1 month to recuperate in San Francisco with friends. It feels great to be back at home.
My voice seems to be gaining some volume in the lower registers. It's definitely stronger in the morning and usually reverts back to a whisper towards the evening. It's still very difficult to speak at restaurants and there's no way I can use a drive-thru yet for my morning coffee. However it's very easy to have regular conversations indoors. I am so thankful there are no spasms. My voice right now feels and sounds like I received a very strong botox shot.
I continue to apply mederma to my scar 3x a day + mederma PM at night. I don't notice any considerable difference in the lightening of the scar. I hope it gets better over time. All of my friends noted the scar is barely noticeable.
My energy level is back to where it was pre-surgery. I finally returned back to the gym last week. I made it 4x and it feels great despite losing a lot of strength after being away for more than a month.
The numbness under my chin is slowly going away. The left side feels a little more numb than the right but there's no pain at all. It still feels a little weird to shave with the area slightly numb.
I'm pretty happy with the progress and hope I have a much louder and functional voice at the 3-month mark.
I finally returned home to Hawaii on 5/15. I took roughly 1 month to recuperate in San Francisco with friends. It feels great to be back at home.
My voice seems to be gaining some volume in the lower registers. It's definitely stronger in the morning and usually reverts back to a whisper towards the evening. It's still very difficult to speak at restaurants and there's no way I can use a drive-thru yet for my morning coffee. However it's very easy to have regular conversations indoors. I am so thankful there are no spasms. My voice right now feels and sounds like I received a very strong botox shot.
I continue to apply mederma to my scar 3x a day + mederma PM at night. I don't notice any considerable difference in the lightening of the scar. I hope it gets better over time. All of my friends noted the scar is barely noticeable.
My energy level is back to where it was pre-surgery. I finally returned back to the gym last week. I made it 4x and it feels great despite losing a lot of strength after being away for more than a month.
The numbness under my chin is slowly going away. The left side feels a little more numb than the right but there's no pain at all. It still feels a little weird to shave with the area slightly numb.
I'm pretty happy with the progress and hope I have a much louder and functional voice at the 3-month mark.
Thursday, May 5, 2016
T+3 Weeks (w/ Voice Sample)
It's been a little over three weeks since my SLAD-R surgery at UCLA with Dr. Berke.
My voice is still a whisper and it can be very frustrating at times. The most noticeable improvement is my ability to speak more words in a sentence before having to take another breath. Don't get me wrong, I still feel winded if I'm trying to push the words out in a loud environment. But in quiet indoor environments I am noticing I'm able to hold a pretty normal conversation without feeling light headed.
This week I finally started exercising again. On 5/2 (Monday), I went for a 2.25 mile jog. I was pretty winded after the first mile so I decided to half walk and half jog for the remainder of it. I also did the same on 5/4 (Wednesday) and today 5/5 (Thursday).
Prior to surgery I would workout 4-5x a week so it felt good to start exercising again but I can't wait to get back in the gym and lifting again. I need to wait about 1 month post op per Dr. Holliday before lifting heavy weights.
I still need to be mindful that I don't gulp down liquids too quickly. Other than that, I have been eating and drinking as normal.
I am able to touch the incision site with no problems. I apply mederma 3x a day in addition to mederma PM before I go to bed. My bottom neck line present before surgery is still more prominent than normal which I'm presuming is from slight post surgical swelling which I can feel when I touch the incision site. It's not painful but just slightly tender and numb to the touch. The scar is a little dark and I'm hoping it will lighten over time. I posted a closeup and regular shot of the incision site below.
I'm still recuperating in San Francisco and return back to Hawaii on 5/15.
My voice is still a whisper and it can be very frustrating at times. The most noticeable improvement is my ability to speak more words in a sentence before having to take another breath. Don't get me wrong, I still feel winded if I'm trying to push the words out in a loud environment. But in quiet indoor environments I am noticing I'm able to hold a pretty normal conversation without feeling light headed.
This week I finally started exercising again. On 5/2 (Monday), I went for a 2.25 mile jog. I was pretty winded after the first mile so I decided to half walk and half jog for the remainder of it. I also did the same on 5/4 (Wednesday) and today 5/5 (Thursday).
Prior to surgery I would workout 4-5x a week so it felt good to start exercising again but I can't wait to get back in the gym and lifting again. I need to wait about 1 month post op per Dr. Holliday before lifting heavy weights.
I still need to be mindful that I don't gulp down liquids too quickly. Other than that, I have been eating and drinking as normal.
I am able to touch the incision site with no problems. I apply mederma 3x a day in addition to mederma PM before I go to bed. My bottom neck line present before surgery is still more prominent than normal which I'm presuming is from slight post surgical swelling which I can feel when I touch the incision site. It's not painful but just slightly tender and numb to the touch. The scar is a little dark and I'm hoping it will lighten over time. I posted a closeup and regular shot of the incision site below.
I'm still recuperating in San Francisco and return back to Hawaii on 5/15.
Incision site |
Incision site (close up)
|
Monday, April 25, 2016
T+13 Days
After landing in San Francisco, everything was pretty normal. I was going out, walking around, eating/drinking as usual until the evening of Tuesday 4/19/16.
My friends took me to a Poke Bowl shop where I ordered Spicy Tuna as my protein and later realized there was Octopus mixed in by accident. As I was eating my Poke bowl, there were several pieces of white meat and I didn't think anything of it ---- until I saw suction cups! I then realized I ate something I shouldn't have. I've never eaten Octopus before because I know I'm allergic to shellfish and squid, hence I had no idea what those few white pieces of meat were at first.
Note on my shellfish allergy: If I accidentally eat shrimp mixed in with food I typically get itching and I sometimes have difficulty swallowing. I have never gone into anaphylactic shock or needed to visit the ER due to my shellfish allergy. I have never officially been diagnosed with a shellfish allergy by a Doctor.
I began to feel itching on my arms and went to sleep. I woke up feeling very tight around my neck and upon further inspection my neck was quite swollen. I took some Benadryl in the morning and again in the afternoon. There was minimal relief so I felt it was best to visit the ER. I was admitted into the hospital on the afternoon of Wednesday 4/20/16.
There was a lot which transpired because the Doctor's at Mills-Peninsula have never heard of SLAD-R surgery and were being extra cautious. They didn't know if my swelling was truly an allergic reaction or a complication after surgery. They even contemplated air lifting me back to UCLA which in my opinion was overkill. However in retrospect I appreciate the Doctors at Mills-Peninsula aired on the side of caution.
I was on IV from 4/20 thru 4/23. I was allowed to have a liquid diet on the morning of 4/23 and slowly progressed to a regular diet in the evening and eventually discharged on 4/24.
**Note I've added more details at the bottom of this posting (for those who are interested) in regards to the events which happened at the hospital. The above is a brief summary but overall it was a VERY frustrating experience! But again, the doctors did the best they could with what the knew and I'm thankful for that.**
I got back to the house on the evening of 4/24 and took a nice long hot shower. The steri strips which were already beginning to curl, easily peeled off after my shower. I noticed a big bump on my neck and was a little worried --- but as time progressed it started to go away. My neck was probably squeezed tight from the steri strips and needed time to "relax."
This morning on 4/25, the bump around the incision spot is barely noticeable and looks pretty normal. The incision site looks very good. If you notice in the photos I have two lines on my neck. The green arrow shows a neck line which was present BEFORE surgery. The red line shows the incision site. The green line is more prominent because there is still some post surgery swelling (or post allergic reaction swelling haha). But other than that I'm happy with how my neck looks. I bought some mederma + mederma PM to begin using within a few days.
My voice is the same and still a whisper. It's stronger in the morning and weakens as the day progresses. If I talk a lot I do get light headed.
My diet is normal except I will stay away from ALL seafood whether cooked or raw as a precaution!!!
**Additional events from my frustrating hospital ordeal**
My friends took me to a Poke Bowl shop where I ordered Spicy Tuna as my protein and later realized there was Octopus mixed in by accident. As I was eating my Poke bowl, there were several pieces of white meat and I didn't think anything of it ---- until I saw suction cups! I then realized I ate something I shouldn't have. I've never eaten Octopus before because I know I'm allergic to shellfish and squid, hence I had no idea what those few white pieces of meat were at first.
Note on my shellfish allergy: If I accidentally eat shrimp mixed in with food I typically get itching and I sometimes have difficulty swallowing. I have never gone into anaphylactic shock or needed to visit the ER due to my shellfish allergy. I have never officially been diagnosed with a shellfish allergy by a Doctor.
I began to feel itching on my arms and went to sleep. I woke up feeling very tight around my neck and upon further inspection my neck was quite swollen. I took some Benadryl in the morning and again in the afternoon. There was minimal relief so I felt it was best to visit the ER. I was admitted into the hospital on the afternoon of Wednesday 4/20/16.
Admitted to Mills-Peninsula on 4/20/16 |
My neck was noticeably swollen on 4/20/16 |
There was a lot which transpired because the Doctor's at Mills-Peninsula have never heard of SLAD-R surgery and were being extra cautious. They didn't know if my swelling was truly an allergic reaction or a complication after surgery. They even contemplated air lifting me back to UCLA which in my opinion was overkill. However in retrospect I appreciate the Doctors at Mills-Peninsula aired on the side of caution.
I was on IV from 4/20 thru 4/23. I was allowed to have a liquid diet on the morning of 4/23 and slowly progressed to a regular diet in the evening and eventually discharged on 4/24.
Discharged from the hospital! |
I got back to the house on the evening of 4/24 and took a nice long hot shower. The steri strips which were already beginning to curl, easily peeled off after my shower. I noticed a big bump on my neck and was a little worried --- but as time progressed it started to go away. My neck was probably squeezed tight from the steri strips and needed time to "relax."
This morning on 4/25, the bump around the incision spot is barely noticeable and looks pretty normal. The incision site looks very good. If you notice in the photos I have two lines on my neck. The green arrow shows a neck line which was present BEFORE surgery. The red line shows the incision site. The green line is more prominent because there is still some post surgery swelling (or post allergic reaction swelling haha). But other than that I'm happy with how my neck looks. I bought some mederma + mederma PM to begin using within a few days.
Red arrow = Incision from surgery Green arrow = Neck line I already had before surgery |
My diet is normal except I will stay away from ALL seafood whether cooked or raw as a precaution!!!
**Additional events from my frustrating hospital ordeal**
- Wednesday 4/20/16
- Admitted into the ER at Mills Peninsula Hospital
- They ran an MRI and noticed a small amount of fluid near the right side of the incision.
- I was given Benadryl and an anti-inflammatory steroid via IV.
- Mills Peninsula was able to get ahold of the resident doctor on-call at UCLA; The resident doctor recommended I be on antibiotics and stay in the hospital overnight. They will attempt to get a hold of Dr. Berke tomorrow.
- I am transferred to the ICU step-down floor so I have heart monitors and an IV hooked up to me.
- Thursday 4/21/16
- My neck was still swollen but not as bad as the prior day and the tenderness around the glands has gone down.
- 9am: The Dr. at Mills Peninsula feels it's a bad reaction to the Octopus.
- 11am: The ENT at Mills Peninsula examined me and feels it's a bad reaction to the Octopus and is fine releasing me.
- 2pm: Now the Dr. at Mills Peninsula notified me they will keep me for 5 days. I will be on an IV only diet --- so no food or drink. They contemplated air lifting me back to UCLA but decided to leave me at Mills Peninsula based on information provided by Dr. Berke.
- 3pm: To get further clarification, my mother called UCLA and spoke to Dr. Berke. He said there "could be" a salivary leakage point causing an accumulation of liquid which "could be" causing an infection. Dr. Berke is concerned that if I continue to eat and drink food, particles could get stuck in the leakage point and want me to be on IV for 5 days for the "possible" leakage point to heal. This is from the SURGICAL point of view. UCLA is making the assumption above based on my symptoms from a post surgery point of view and not factoring in the Octopus.
- 5pm: A case manager came to my room and informed me they are attempting to transfer me to UCSF or Stanford so I can be provided with a "higher level of care." It turns out the team at Mills Peninsula is not comfortable treating or diagnosing me as they are not familiar with SLAD-R
- 6pm: Frustration sets in. I am not sure why they want to transfer me to a different hospital because:
- #1: I have never had a fever even prior to being admitted into the hospital
- #2: My blood pressure has consistently been below 120/80
- #3: There were no visible signs of infection (leakage etc..) other than the swelling which did go down with the Bendaryl
- #4: No swallowing issues
- Physically I feel perfectly fine.
- Friday 4/22/16
- 9am:
- The Dr. came to examine me and now is concerned because my neck was slightly red. I explained my skin is very sensitive and she just examined my neck which turned red after.
- The Dr. is now concerned about Celulitis and wants to drain the fluid around the incision site
- 10am:
- UCSF does not want to touch my incision because "it's so minimal" and it's normal post surgery fluid -- The Mills Peninsula Dr. said UCSF would have just discharged me but they will not follow that recommendation.
- Stanford said they have 60 people lined up in the ER and are unable to take me
- So the Dr. at Mills Peninsula will ask the radiology department to drain the fluid
- 11am:
- Medications being taken:
- Prednisone
- Protonics
- Ampicillin
- Vancomycin
- 1pm:
- The ENT came to visit me and said they will attempt to extract the tiny pocket of fluid
- Best case scenario - It's just dried blood and post surgery fluid.
- Worse case scenario - It's pus and will better determine what antibiotics to use
- However the ENT thinks it's just dried blood and I had an allergic reaction to the Octopus
- 2pm:
- Now the draining of the incision is cancelled. The radiologists aren't comfortable removing the fluid because it's a little deep
- They will continue to observe me in the hospital
- Saturday 4/23/16
- 8am: ENT came to visit and said I look really good and wants me to start eating a liquid diet and evaluate if it causes anymore swelling. If there's no swelling, I will be discharged by Sunday at the latest. They just want to make sure there's no salivary leak/incision.
- 11am: Doctor wants to observe me overnight again and discharge me tomorrow
- 5pm: I'm given the green light for solid foods! YAY!
- 8pm: I'm moved from the ICU step-down floor to a regular room. The heart monitors are finally taken off and the IV is only reattached when I need my medication!
- Sunday 4/24/16
- 9am: I am notified I need a few more dosages of vancomycin and I will be released about 7pm tonight
- 7pm: #freedom
Tuesday, April 19, 2016
T+7 Days (w/ Voice Sample)
Over the weekend I started to develop a hacking cough. It starts off as a tickle in my throat and I begin to cough profusely. Sometimes there is clear phlegm which comes up and other times it's only a dry cough. It's made it a little difficult to sleep but I find sleeping on my side helps a lot. After a few minutes it goes away.
The area under my chin/neck feels very numb to the touch. I did bring this up to Dr. Feinstein on Friday and he said others have reported the same issue after surgery. (The area above the incision leading up to my chin)
On Sunday 4/17/16 - I hopped on a plane from LAX-->SFO. My mom helped me communicate if needed. She will be returning home to Hawaii and I will be recuperating in San Francisco with friends until 5/15/16.
I originally planned it this way thinking I wouldn't be able to eat solid foods for 25 days, have a persistent cough with swelling and pain in my neck. The only issue I have is the intermittent cough and numbing of the chin. Technically I could fly back home to Hawaii but since everything is already arranged I will just enjoy the time with friends here in San Francisco.
I was out from 8am when we left the hotel for the airport and I didn't get "home" until 6pm in San Francisco as I had lunch and went out to the city with friends after landing. This was the longest I've been out and about and I was completely exhausted. I ended up sleeping for 12 hours.
The steri strips are starting to curl slightly but there's a lot more to to go before it falls off on its own. It has only been one week so I refrain from touching it. When I go outside I do wear a scarf to protect it from the sun --- I know I still have the steri strips on but I don't want to take any chances of the scar darkening.
In regards to my diet, everything is back to normal food-wise. As for liquids I can drink anything except 1) I need a straw and 2) I can't take huge gulps.
I don't know if this does anything but several times a day I try to do mouth movements to move the area under my chin to alleviate the numbness. I also massage under my chin with my fingertips. For the neck area, I attempt to SLOWLY look up, left, right and down repeatedly for several minutes so my neck does not develop any muscle tension. There is no pain -- only some pinching from the steri strips.
As for my voice -- It's VERY breathy. There is no way I can be heard at restaurants. I am able to be heard indoors over the dining room table with a lot of effort. My friends can hear me while we are driving as long as the music is turned down and I'm leaning forward slightly (they're in the front and I'm in the backseat). But there are no spasms!
The area under my chin/neck feels very numb to the touch. I did bring this up to Dr. Feinstein on Friday and he said others have reported the same issue after surgery. (The area above the incision leading up to my chin)
On Sunday 4/17/16 - I hopped on a plane from LAX-->SFO. My mom helped me communicate if needed. She will be returning home to Hawaii and I will be recuperating in San Francisco with friends until 5/15/16.
Goodbye LA! |
I was out from 8am when we left the hotel for the airport and I didn't get "home" until 6pm in San Francisco as I had lunch and went out to the city with friends after landing. This was the longest I've been out and about and I was completely exhausted. I ended up sleeping for 12 hours.
The steri strips are starting to curl slightly but there's a lot more to to go before it falls off on its own. It has only been one week so I refrain from touching it. When I go outside I do wear a scarf to protect it from the sun --- I know I still have the steri strips on but I don't want to take any chances of the scar darkening.
In regards to my diet, everything is back to normal food-wise. As for liquids I can drink anything except 1) I need a straw and 2) I can't take huge gulps.
I don't know if this does anything but several times a day I try to do mouth movements to move the area under my chin to alleviate the numbness. I also massage under my chin with my fingertips. For the neck area, I attempt to SLOWLY look up, left, right and down repeatedly for several minutes so my neck does not develop any muscle tension. There is no pain -- only some pinching from the steri strips.
As for my voice -- It's VERY breathy. There is no way I can be heard at restaurants. I am able to be heard indoors over the dining room table with a lot of effort. My friends can hear me while we are driving as long as the music is turned down and I'm leaning forward slightly (they're in the front and I'm in the backseat). But there are no spasms!
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