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: 

• SLAD-R Facebook group 
• Erik Laurence's SLAD-R Diary
• Richard Stuart's SLAD-R Blog

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: 

• Ania "Anna" Prus - Assistant to Dr. Berke - aprus@mednet.ucla.edu 
• Gloria "Lorena" Sanchez - Scheduling / Admin - GSanchez@mednet.ucla.edu 
• Telva Aguilar - Patient Financial Services - taguilar@mednet.ucla.edu  

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.