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. 
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! 
**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. 

Red arrow = Incision from surgery
Green arrow = Neck line I already had before surgery 
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**

  • 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. 

Goodbye LA!
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! 

Friday, April 15, 2016

T+3 Days

This morning I woke up and the incision is a bit tender. It looks slightly swollen but there's no pain. I took my steroid medication and antibiotics at 6am and fell back asleep until 9am. 

It was a nice day so we went for a walk through the botanical garden right across the street. We saw some butterflies and squirrels running around. It was quite nice as it's Sunny and about 65 degrees outside. 

Selfie at the Botanical Garden! It feels so good to be outside!
Seating area at the Mildred E. Mathias Botanical Garden

It helped me to work up an appetite and we walked to Denny's to order some takeout. Today I was able to eat: 

  • Scrambled Eggs 
  • Hashbrowns 
  • 2 Sausage Links 
  • Smoothie 
The amazing thing is I haven't needed thick-it other than on day 1 after surgery. I am swallowing just fine and pretty happy with my progress! 

I am a little worried about the tenderness in my neck. Below are two photos. One at 6am and another at 2pm. I've been on my antibiotics for a little under 24 hours. I'm not sure if there's slight discharge but it could be residue from a few days ago. I left a message with Dr. Berke's office and haven't heard back yet. I will continue to monitor the incision for any changes. 

Neck at 6am
Neck at 2pm. Slightly less swollen
Update @ 5pm: 
  • I saw Dr. Feinstein (Resident Physician) and he said the incision looked perfectly fine
  • It was comforting to hear especially before the weekend and knowing I will fly from LAX-->SFO on Monday 
  • The swelling is going down from this morning so it looks like the antibiotics are working as they should 
I was craving some Starbucks and I was actually able to drink an Iced Venti Soy White Mocha without Whipped Cream in addition to a Chocolate Croissant. 

Tasted so good! 

I got back to the room and rested. I'm quite exhausted even though I haven't been doing much. I know the trauma from surgery probably tired my body out. 

Thursday, April 14, 2016

T+2 Days

I woke up at 6am, took my medications and fell back asleep. I got back up around 10am feeling very well rested. 

My mom went down to Denny's and bought me a bowl of baked potato soup, mashed potatoes and a strawberry banana smoothie. It tasted so good I devoured all of it! 

Post Op Appointment: I felt this was the most uncomfortable part of the process so far! My large bandage was finally taken off which allowed Dr. Berke to apply some pressure to the incision. This was VERY uncomfortable and the first time I felt real pain. He wanted to ensure there was no liquid building up underneath the incision. 

Another ENT on his team attempted to take video of my vocal chords. This was VERY uncomfortable. They eventually had to use the laryngoscopy through my nose and down my throat. This was a lot more comfortable than the camera going straight down my throat from the mouth. 

Dr. Berke noted my incision looked a bit swollen. He also asked if I was prescribed any antibiotics which I was not so he prescribed something to help with the exterior swelling. We picked this up at CVS and headed back to the hotel room. It felt really good to walk around outside! 

I was feeling pretty good about my swallowing abilities so I had the following for dinner from Denny's:
  • Grilled zucchini and veggies 
  • Scrambled Egg 
  • Potato Soup 
  • Strawberry Banana Smoothie 

All of it went down smoothly and I also took my steroid medication without having to crush the pill! 

Wednesday, April 13, 2016

T+1 Day w/ Voice Sample (Day after Surgery + Discharge Day!)

I woke up at 5am feeling some pain in my chest area and when I swallow. It was very minimal but I requested some pain meds at 5:30am. The pain felt like it was from the breathing tube from during surgery. 

Around 730am a lot of Dr. Berke's team came to visit me. They removed the bandage and inspected the drain tube. They said it looked very good and it was dry so they removed the tube, added steri strips and placed the large bandage back on my neck. 

Dr. Holliday came by about 8am with some pudding. He taught me some techniques to swallow. I started off slowly but eventually got the hang of it. He said I am now allowed to eat puree'd food. 

My first meal was puree'd pears, soy milk, and pudding. 

My first meal in over 36 hours! 

I downed the pears and pudding! I added a packet of thick-it to a small amount of soy milk. 

Around 10am Dr. Berke's team came to visit again and checked on how I handled breakfast. Because I did so well, they asked if I wanted to be discharged today! Of course I said yes! 

I walked around the recovery unit to get the blood flowing in my legs. I also met and spoke to a friend I made on the SLAD-R Facebook page! It was so nice to have support in the same recovery area knowing we both were going through the same thing. 

I then ordered lunch which consisted of puree'd chicken, mashed potatoes and a bowl of potato soup.
Second meal the day after surgery

The lunch disappeared quite quickly! The RN then came by with my discharge papers to sign. Dr. Holliday also made a last round to ensure everything was ok. The pharmacist came by and dropped off several medications: 

  • Steroid for the internal swelling
  • Antacid 
  • Pain medication (liquid form) 
  • Stool softener (to use with the pain medication) 

Around 4:30pm, I was wheel chaired to the shuttle pick up area and taken back to the hotel. 
Time to be discharged!

Because I was discharged a day early, I still wasn't able to remove the large bandage or shower. I managed to rinse/wash at least my hair. 

Before bed I inhaled a container of applesauce. I then took some pain medication even though I probably didn't need it. I wanted to ensure I slept comfortably. 

Below is a recording made in the morning: 

Tuesday, April 12, 2016

T-0 days - Surgery Day

The shuttle from the Hilgard House took us directly to the front door of of the Ronald Reagan Medical Center at 5am. We proceeded to admissions in suite 1314. After filling out some paperwork I was given a yellow packet with my surgical information and sent to the second floor to the pre-op area. 

I changed into my surgical gown and placed all my belongings in the clear plastic bag provided. I was then visited by: 

  • RN on duty
  • RN to place in my IV (She was amazing and did an awesome job)
  • Anesthesiologist 
  • Dr. Feinstein (Resident Doctor for Dr. Berke) 
  • Dr. Holliday
  • Dr. Berke 
While waiting I listened to the meditations CD and dozed off a bit. At about 7:30am I was informed it was time to start. I gave my glasses to my mom and was wheeled away. Because I couldn't see (my contact prescription is -650/-600) all I saw were blurs and heard voices not to mention it was freezing! 

Before I proceeded into the OR, the Anesthesiologist said I will begin to feel relaxed. All I remember is being rolled into the OR and within a few minutes I was out. My next recollection is waking up in the post-op area. 

A RN was constantly monitoring my vitals. Once cleared I was rolled into the transitional recovery unit. 

I don't remember any pain at all. I was just spitting up a lot of phlegm and using the suction device to clear it. I was a bit uncomfortable when the meds would wear off but it wasn't painful at all. 

Dr. Berke came into the room and informed me the nerve on my left vocal chord was unusually small. This could have contributed to my SD symptoms. He said all went well and we will change the dressing/bandage tomorrow. 

Here's a photo of my post op: 

Monday, April 11, 2016

T-1 Day / Pre-Op Appointment

My pre-op appointment is scheduled for 3pm. It allowed me time to explore around the hotel. 

The Hilgard House is actually directly behind the UCLA Tiverton House. The area has a lot of shops and restaurants nearby including Target, Trader Joe's, Ralphs, Starbucks, Denny's, CVS etc.. This will be very convenient over the next week. 

My mother and I had In-and-Out Burger before lunch and headed back to the hotel to relax before my pre-op appointment. 

Upon entering the office I finally met Gloria ("Lorena") who I've been communicating with via E-mail for the last several months. She was upbeat and friendly as expected.  

I then met Dr. Holliday and Dr. Berke. I spent most of my time with Dr. Holliday who answered any questions I had. He could tell I was nervous and tried to reassure me everything will be fine. Dr. Berke also reassured me I will be fine and I am in good hands. 

I then proceeded to patient financial services at 200 medical plaza drive. I am paying for this procedure out of pocket. Telva at financial services was friendly and very helpful. She contacted me a few days prior to ensure I had all the paperwork needed. Everything went smoothly. 

Upon exiting the medical plaza building we spoke to a volunteer asking about shuttle services to and from the Hilgard House tomorrow morning. The gentleman was very friendly and provided us with phone number to call at 4:30am for a pick up. 

Everyone we've come into contact at UCLAHealth have been attentive, courteous, and genuinely interested in answering my questions/concerns. 

To prepare I listened to "Meditations to Promote a Successful Surgery." It's a little "out there" but it really helped me to relax and put myself in the right frame of mind prior to surgery. I also had a playlist of classical music to calm me down prior to sleep. (Note - I did start listening to this CD on the plane while flying from HNL-->LAX)

I have to report to the hospital at 5am meaning no meals after 9pm and no liquids after 3pm. 

Sunday, April 10, 2016

T-2 Days (HNL-LAX)

Today is the day I leave for LAX. My mother will be traveling with me to assist me through this surgery. I have reservations set at the Hilgard House for our entire stay in LA. Unfortunately the UCLA Tiverton House was booked.

Let's just say my flight arrived in typical United Airlines fashion. Originally we were at Gate 15 and moved to Gate 12 where our flight was delayed due to a late inbound aircraft. We then were move to Gate 8 and delayed 2.5 hours due to a mechanical issue. Eventually we arrived safe and sound at LAX.

Upon arrival we had some late night ramen and eventually settled into our hotel.

Saturday, April 9, 2016

T-3 Days

This last week I have been eating at my favorite restaurants knowing it'll be a few weeks before I enjoy these foods again. I also enjoyed my last Les Mills Body Pump class at the gym today which I always do every Saturday. I know it'll be quite sometime before I can return. 
My last BodyPump class for a while!

Saturday, April 2, 2016

SD Background / Pre-Op Recording

This blog was created to share my Spasmodic Dysphonia (SD) experience leading up to SLAD-R (Selective Laryngeal Denervation and Renervation) surgery. 

A little about me -- I am a 35 year old male living in Honolulu, Hawaii. I am an Operations Consultant for McDonald's Corporation. I manage and lead the daily operations of six company owned and operated McDonald's restaurants overseeing six General Managers and roughly 500 employees. I have been working for McDonald's for 19 years. 

I am going on six years in my current position which requires the constant use of my voice. I am constantly on phone calls with my General Managers, vendors and customers, face to face conversations/meetings with my employees and customers etc.. 

In 2005 I began to have issues with my voice and sought out assistance from a local ENT here in Honolulu.  I felt as if my voice was "strangled" and felt like I would choke on certain words. My voice was not as fluid as it once was. 

The ENT insisted my issue was due to a deviated septum and acid relfux in which he recommended surgery to correct the deviated septum. I disagreed with the diagnosis but the emotions of feeling desperate and not knowing my condition swayed me to proceed with the deviated septum surgery. I kept telling this ENT it was something to do with my throat and vocal chords but he insisted it was not. I was on a regime of acid reflux medication and allergy medication including nasal sprays. 

Of course after surgery my symptoms still persisted and it prompted me to seek out another ENT here in Honolulu. I researched information online and suspected I had Spasmodic Dysphonia -- information which I gave to my new ENT. She was not familiar with the condition and referred me to an ENT in Chicago. 

In 2010 I was officially diagnosed with Spasmodic Dysphonia. By definition: 
    Spasmodic dysphonia (or laryngeal dystonia) is a voice disorder characterized by involuntary movements or spasms of one or more muscles of the larynx (vocal folds or voice box) during speech.
There are two forms of SD and I was diagnosed with ADSD (Adductor SD) by Dr. Robert Bastian in Downers Grove, IL and began receiving Botox treatments. This would require me to fly from HNL-ORD every 8-12 weeks which was quite costly. Results of these shots often resulted in a 3-4 week breathy period making it very difficult to communicate. At the time, I felt the 4 weeks of having a 'good voice' outweighed the side effects. The staff at Dr. Bastian's office were amazing I might add in addition to Dr. Bastian being very patient and knowledgable. 

Eventually I found a neurologist in Hawaii to administer Botox shots for SD in 2012. Because the doctor was local, we played around with the dosage and if there was no effect I could always return the following week for a reinjection. We attempted to use 1.75, 1.5 and 1.25 dosages with various combinations of bilateral and unilateral. Many of my injections resulted in 4-6 weeks of a breathy voice, 2-3 weeks of a good voice and I would have to wait until the 3 month mark for a re-injection. This doctor has a 3 month minimum between successful injections. I also suffered from heavy bruising on several occasions when he had difficulty finding the vocal chord. 
Painful bruising from a Botox injection

I became very frustrated with the variability of the Botox injections. The ups and downs of the injection cycle --- breathy and unable to speak loudly, a short period of a good voice and eventually returning to a strangled voice really started to take a mental toll. I always felt like I was being judged every time I spoke. This prompted me to seek the SLAD-R surgery as a permanent fix for my condition. Some resources I found very helpful: 

I made my decision to proceed with the SLAD-R surgery with Dr. Gerald Berke after my November/December 2015 injection. I received a unilateral injection right before Thanksgiving which didn't quite take. I revisited the neurologist on December 10th 2015 and he reinjected the same side -- but it turns out the original shot before Thanksgiving probably had some effect. After December 10th my voice was shot completely. I felt like I received a double dosage and I sounded like I had laryngitis for a good 3 months! This only reaffirmed my decision to proceed withe the SLAD-R surgery. 

In January 2016 I began reaching out to Dr. Berke's office and set my surgery date for April 12th 2016. Below are a list of contacts you may find useful: 
Insurance: After two attempts the surgery was denied by my insurance company. HMSA (Hawaii Medical Service Association) is an affiliate of Blue Cross Blue Shield. My plan is an HMO and they state "the standard form of treatment is Botox" in addition to saying, "Based on our review, our medical director has concluded there are no well-designated randomized controlled published trials that this procedure improves health outcomes." 

I worked closely with Gloria to determine the costs of the surgery. UCLA provides a 30% discount fee for those paying out of pocket. Keep in mind they require payment BEFORE the surgery! 

Also a side note -- See if your credit card limit can be increased and charge what you can. Why not get airline miles out of this too? Then right after charging your credit card, pay down the balance ASAP. They also accept cashiers check as a form of self payment. 

Below is a recording of my voice before surgery.