Spasmodic Dysphonia Surgery - SLAD-R Surgical Diary
I had Adductor Spasmodic Dysphonia (AD-SD) and underwent the Selective Laryngeal Adductor Denervation - Reinnervation (SLAD-R or "De-Re") procedure at UCLA Medical Center in Feb 2011. It was performed by Dr. Berke and his team. This surgical journal blog charts my experience starting from a few days before surgery and through my ongoing recovery.
I just recently passed the 5 year anniversary of my SLAD/R surgery with Dr. Berke and his team, and more than 3 years since my last update.
I've been meaning to post an update these past few years, but I just never managed to get around to it. That's partly because I've been busy: we moved back to the US from China, bought a house, started (a couple of) new jobs, etc. But it's also because I just don't think much about spasmodic dysphonia any more. And that's because I don't have to.
My voice has remained strong, clear and most of all reliable. I no longer worry about it misbehaving at the wrong moment, or giving out on me when I need it. Along with this gift has come an unexpected bonus: a reduction in stress that I don't think I noticed I used to have.
For those of you wondering about the long term effect of SLAD/R surgery, here's a recording from this morning:
It's hard to believe that two years have come and gone since my SLAD/R surgery with Dr. Berke in California. I think back to when it was only two weeks since the surgery, and wished I could just press the fast forward button. A friend told me that before I knew it, it would be two months, and then two years. It turns out that she was right!
My voice is strong, spasm-free and mostly doesn't squeek. I mostly don't struggle in loud environments anymore. Occasionally, someone will have trouble hearing me in a loud room, but then I realize that I can't hear them either. So it's not a case of a weak voice, but rather a normal voice in a place that's too loud.
I stopped taking the Prilosec a long time ago, and I haven't needed it.
There's not much more to say. For all intents and purposes, my voice is normal, and Spasmodic Dysphonia is happily becoming a distant memory.
Here's how I sound today:
Thanks again to Dr. Berke and his outstanding team at UCLA for pioneering and carrying out this incredible operation.
Last month I was in California, so I set up a follow-up
visit at Dr. Berke’s office. The visit
took place about a year and a month after my surgery.
I was seen by Dr. Jennifer Long, who said that my voice
sounded good. She had a look at my
larynx using a laryngoscope and noted that they were showing good symmetry.
At the time I was still unintentionally hitting high notes
on a few words here and there. Noting
that there was some inflammation on my larynx, she suggested that reflux could
be playing a role and that I should try taking Prilosec. While I haven’t noticed a problem with
reflux, my throat was indeed scratchy from time to time. Dr. Long prescribed that I take double the
recommended dosage of Prilosec OTC, which can be purchased over the counter
(i.e. 2 tablets per day instead of the usual 1).
I’ve been taking the Prilosec for about four or five weeks now and
the occasional falsetto notes have stopped. My throat is also no longer scratchy. It would seem that the Prilosec is helping,
so I am planning to keep taking it for a while.
It’s also possible that I’m just further along in the recovery. At some point, I will probably ease off the
Prilosec and see if there’s any difference.
As a side note, Dr. Long remarked that my larynx is somewhat
narrow overall, and that this seems to be a characteristic not uncommon for people
with spasmodic dysphonia. Perhaps people
with narrow larynxes naturally have their vocal cords closer together, lowering
their tolerance to the hyperactive signals coming down the laryngeal
nerve. That’s my theory, not theirs.
My voice feels stronger and better than ever, and I don’t
think I’ve had a single voice spasm since before the operation. It’s not 100% and it can give out if I get
tired. It’s also not quite as loud as it
once was, and yelling in loud environments is not my strong suit.
Today marks exactly one year since my SLAD-R surgery with Dr. Gerald Berke on February 1st, 2011. I’m
thrilled to have finally reached this milestone and what a year it’s been. I was expecting a four to six month recovery, was hoping for a two to three month recovery, and wound up with a year long recovery. While this has been a lot harder and took a lot longer than expected, the result is worth it.
You can listen to the result yourself here:
I would now characterize my voice as near normal, perhaps 95% of normal. It's now fully functional and doesn't impede me in any way. It's loud and for the most part clear. I can yell if I need to, and no longer have
trouble in noisy environments.
The reason I don't put it at 100% is because it's not quite as smooth or melodious as I would like it
to be. The squeekiness that I was experiencing over the past few months has almost completely gone away, but I still get it here or there with a word or two. That's been happening less and less, and I expect it will go away completely. In the mornings, I need to speak for a few minutes to "warm
up" my voice before it gets to an optimal state.
Late at night or especially after a couple of drinks, my voice can start
to give out a little.
The scar has healed well.
I also can’t really sing very well, but then again
I never really could. While it would be nice to sound like Michael Bublé, I’ll
have to leave that to another lifetime.
For those of you that are singers, be aware that this operation will
probably not do a great job of restoring your singing voice.
The neck pain that I reported a few months ago has also all
but disappeared. I still don’t know if
it was related to the operation or not. The scar has healed
almost perfectly and is difficult to see.
A little bit of numbness does persist in the area above the incision and
below my chin, but it doesn’t bother me.
That part of my neck is still a bit flabbier than I’d like it to be, but
maybe that’s just because I'm older, and hopefully it will regain some tone with
time.
The best news of all is that I have now gone for 365 days
without so much as a single voice spasm. Spasmodic dysphonia is not a fun thing to have. The road I took to get relief was a
long one and not always an easy one, but I feel it was the right one. Hats off to Dr. Berke and his team! The work they do is truly amazing, and
something that I’ll be appreciative of for a long time to come.
Going forward, I will probably only update this blog at semi
annual or annual intervals, unless there is something noteworthy to report
along the way.
Please feel free to reach out to me at any time if you have
questions, either by leaving a comment on this blog or by contacting me via the
Spasmodic Dysphonia Group on Facebook, which is another worthwhile resource for people with SD.
It’s been several months since my last entry. My voice is now much louder. In the mornings I sound near normal, and I can go about my days much more easily than before. However, my voice is not perfect. By now as I approach the 10 month mark, I expected it would have been.
The biggest problem I have had during the past few months is a bit of squeekiness, or what I call the “puberty voice.” Sometimes while speaking my voice breaks into a higher pitch for a few words. This is not the same as the spasm type of break I had pre-surgery. I have heard that this phenomenon tends to occur in some people toward the end of the recovery period. In this sense, it’s good news. During the past few months, I was both hopeful because I was getting louder and frustrated because of these slightly embarrassing falsetto moments. These high pitched breaks are happening less and less though, and that’s a good thing. I’m hoping that they go away completely in the next month or so.
The other problem I have is that my voice is not always smooth and can sound a little gravelly. I don’t mind this problem so much. I’d prefer not to have it, and it might go away, but if it doesn’t, I can live with it (assuming the puberty voice resolves).
Here’s another sample so you can listen for yourself:
I have also learned by talking with some other patients that outcomes and recovery periods vary. I was originally hoping for a quick recovery, but instead my recovery seems to be taking twice as long as what some others are experiencing. However, since my voice is already at a stage where I function well, I’m no longer in the mode of counting days as I was early in the recovery, and know that it will simply continue to improve as time goes on.
The best news is that in recent months I have become much more social than I have been in a long time. In many ways, I’ve started to become the old me again, the outgoing, gregarious person I was in my long ago pre-SD days, and that’s a really good thing.
About a month and a half ago (mid-July), I started having some pain on the left rear portion of my neck, and extending into my left shoulder. I figured it was unrelated to my operation and that it would go away after a few days. It didn't.
I went to see the doctor last week. The doctor took some x-rays and decided that I possibly had a pinched nerve, and that physical therapy might help. I told him about my surgery. He seemed to think it was unrelated, though didn't rule it out. I then sent a note to Dr. Berke's office, and his new clinical assistant, Dr. Jamal (Dr. Long had by then moved on to another role in the hospital), about the neck pain. She felt that most likely it was not related to the operation.
Today, I started the physical therapy. I explained the operation to the therapist. She believes that there very likely is a connection between the operation and the pain. Since the muscles in the front of my neck were cut as part of the operation (there are some small muscles in the neck on that area as I understand it; they don't cut any major ones), the muscles in the back of my neck have been compensating.
The PT helped (I would describe it as kind of a neck message targeted at key muscles) and the pain is now less. She gave me some neck exercises to do at home, mainly intended to help the muscles in the front of the neck regain strength. The exercises are also intended to restore some of the mobility that I've lost in my neck since the operation (I can't turn my neck as far left or right as I used to be able to).
There's probably no knowing definitively whether the operation played a role or not. It might just be that I'm getting older, but my gut feeling is that the neck pain is a result of the operation. The pain isn't extreme, just annoying, a "pain in the neck" in every sense of the phrase.
Here’s the latest recording of my voice from this morning. I got tired of reading that tedious passage on the history of China, so instead I’m just talking about my voice for long enough so that you can make your own determination:
I’m nearing the six month mark now, and I wish I could report that my voice has fully recovered, but I’m not quite there yet. However, it does continue to improve every day, and the fact that it’s less than perfect is more of an annoyance than a handicap. I no longer go around apologizing about my weak voice, and very few people ask if there’s anything wrong with my voice when I speak. Either they think I have a head cold (which is sort of how it sounds now) or they just assume that my voice is naturally a little raspy. The only challenge I have is with noisy restaurants – to produce a fair amount of volume, it sort of feels like I’m trying to shout, which eventually becomes tiring.
Dr. Long did tell me that the recovery is “4 to 7 months.” I was probably hoping against hope that I would have my normal voice back in only 3 months. Instead it seems as though I might be getting the full 7 month version. In any case, now that I have much more voice than before, while I’m a little impatient, I don’t really mind having to wait another month or two.
The good news is that I still haven’t experienced any spasms at all, and while I do sometimes miss the louder volume that I could produce with my pre-surgery voice, I do not at all miss the spasms, and am thankful that they are now gone.
I’ve passed the hundred day mark, which was something of a milestone. My voice is getting stronger and is no longer as breathy as it was before. A better description might be “croaky.” I can speak for longer periods of time without getting lightheaded now. However, in noisy places, I still don’t have much volume and so I can’t project. Here’s a sample of my voice at the three month mark, which was a couple of weeks ago:
You can clearly hear that I have a lot more volume now than I did at 3 weeks post op. And if you compare it to the pre-op recording, you can hear that I no longer suffer from vocal spasms, which is great.
Back to my "normal routine" - playing golf at the world's longest golf course in Lijiang, China (near Tibet).
Despite my still imperfect voice, I’ve mostly been back to my normal routine: business travel, conference calls, meetings with customers, etc. If I’m in a quiet environment, then speaking is no longer the chore it was when I had SD. So all that’s left now is for me to improve to the point where I can be comfortable is noisy places too. I suspect that’s still a few weeks off.My scar is healing well. I’ve been careful to apply suntan lotion with SPF50 most days in case I wind up outside for extended periods. I suspect the scar will be barely visible in the future. Most people don’t notice it already. The numbness in my neck is still there, but seems to be less so. I expect that will resolve soon as well.
It’s now about two and half months since the surgery, and there hasn’t been that much to report since my last update. My voice is a little stronger now, and especially in the morning I am starting to have a bit of volume. If I’m in a quiet area, my voice is actually quite functional, and I am pretty much back to my normal routine at work, going on business trips, meeting with colleagues and clients, etc. I even present with my semi-voice in front of small, friendly groups, but not yet in front of large audiences. I can converse relatively easily on the phone now, though I’m hesitant to call people who are unaware that I only have a partially functioning voice. One of the things that I appreciate is that there are no spasms at all, and if I’m in a quiet environment, I can speak quickly and without effort. However, since I still need to use a lot of breath, if I speak a lot I can get a bit light headed, but this is happening less and less.
Loud places such as restaurants are challenging, but I’m getting used to my weak voice, and my weak voice is getting a little stronger every day. Swallowing liquids is not a problem and I don’t gag anymore, but I’m also not up to chugging a bottle of water all in one go. I suppose that will eventually come. The area from the incision to the bottom of my chin is still pretty numb, but I think it’s getting better – either that or I’m getting used to it. But most of the time I don’t notice it.
The good news is that I’m well past the half way point now. The bad news is that I’m getting tired of not having my real voice. But it shouldn’t be much longer now.
Well, one month down, and I’m not sure how many more to go. Dr. Long says to expect my voice to return four to seven months after the procedure. The NSDA website that describes the procedure says two to four. I’m hoping that Dr. Long is just being conservative. But only time will tell.
If I speak a lot with my breathy voice, I can still feel a little lightheaded. This can be avoided by simply whispering instead of trying to force out my weak voice. But I prefer having a little voice over having no voice. I made a recording a few days ago of the same passage about China that I read pre-op, and here it is:
You can hear that I don’t have any spasms anymore, but I also don’t have much voice. Obviously not a trade I would make if it were to be permanent. But it’s not, and I look forward to posting another voice clip when my voice finally does return.
The scar should fade over time.
While the scar is easy to see if you’re looking for it, it’s not highly visible, and as long as I protect it from harsh sunlight, it should disappear over time. I can move my neck left and right without any problems. Looking up, my neck feels a bit tight, as if the skin is being stretched a little. I expect that this will abate with time.Fluids are easier to drink, but I’m still being careful. I’m not as tired anymore and have been putting in full days at work.
I’m trying to spend more time in my office, and less time out with colleagues, partners and customers. It’s not a lot of fun avoiding speaking situations, but I’m getting through it.
Recovering from surgery plus 11 hours of time difference from jet lag do not make for a good combination. I got through my first week back at my office, but am very tired. I’ve been sleeping 8 to 10 hours a night, and feel if I could take a nap during the day I would. A lot of this is jetlag, but it is important to rest too.
Fortunately, much of my work can be done by computer and e-mail. However, I have had meetings with colleagues, both in person and by phone. My voice is functional but still very low in volume and very breathy. I have to use much more breath to get out a sentence than I would with a normal voice, and this tends to make me get light headed.
Technically speaking, I only took two days off from work, one was the Monday I met with Dr. Berke, and the other was the Tuesday of the operation. The next eight days were the Chinese New Year holiday, then I worked remotely for a few days, then attended those conferences and am now back in Shanghai working. It’s been a bit much, and I would recommend taking it easier than I have for at least the first month.
Drinking is getting easier, but I still have to be careful with thin liquids or they’ll try to go down the wrong tube. It’s the same sensation that happens to all of us from time to time, it’s just that it happens a little more often now. I’d say before the procedure that it would maybe happen to me once every month or two, if even. Now it’s happening about once a day or two. It is getting easier though and I expect in another week or so I’ll be able to drink anything I want quickly and without worry. We’ll see.
I’m finally back in Shanghai. In fact, I felt I was back in Shanghai the minute I boarded that China Eastern flight at JFK. People were pushing and shoving, talking loudly in the aisles while others around them were trying to sleep. And the lady across the aisle kept spitting into the vomit bag the whole flight – I was wondering if maybe she too recently had an SLAD/R operation and had excess phlegm that she needed to part with. They should outfit those planes with the suction devices I used at the hospital. Better yet, they should outfit all of China with them. But enough China bashing, I’m getting off topic and there are plenty of good things about China too. (If you want to read more about China, and my tales as a reluctant expat in Shanghai, you can do so at: www.shanghaied.asia.)
Stepping aboard China Eastern is like already being back in China
However, the guy who sat next to me on the flight wasn’t one of them. He spoke Mandarin with a funny accent that I had trouble understanding. And because of the airplane noise, he could barely understand me. Since he noticed that I had a watch, for the last 11 hours of the 15 hour flight, he asked me every 30 minutes how much longer until we land. It seemed that we would never land, but eventually we did. That was sort of a microcosm of what I’m going through now with my voice. It seems that the next several months will never pass. But, of course, they will. And just as sure as I’m back in Shanghai now, I will soon have a strong and spasm-free voice.
As an aside, I do speak a fair bit of Mandarin Chinese, and found that my spasmodic dysphonia was always worse when trying to speak this non-native language than it was when speaking English.
It’s been a long journey, in many respects. In retrospect it wasn’t that bad, but I’m relieved that the hardest part is behind me. Now all I have to do is wait and be patient, which is not easy, because I’m not a patient person.
In one regard, it’s easier to be voiceless in China than in the US. I can just point to things in shops and they’ll just assume that I'm a dumb foreigner that doesn't speak Chinese instead of assuming that I just don’t speak.
Baltimore was more of the same – more colleagues that I hadn’t seen in a long time. More of the “I feel better than I sound” and the Godfather imitation lines. Now I’m back in my hometown in New York. Took Amtrak last night. Ordered the ticket by starting off with, “Sorry I lost my voice.” The Amtrak agent said, “I’m listening up.” This is easier than I thought it would be.
I jettisoned a 30 oz unopened can of Thick-It in my hotel room in Baltimore.
I jettisoned the unopened Thick-It in Baltimore as I don’t need it anymore and I’m traveling alone and with much more luggage than I normally travel with. I also jettisoned my Scar Guard. I figured I would try using it to help protect my scar, but it gets flaky and shouldn’t be used in hirsute areas, so I decided it wouldn’t be helpful.
It’s now two weeks since the operation, and I’m doing fine. For me at least, the first two weeks weren’t “highly unpleasant.” The first day or two were “somewhat unpleasant” with the rest being what I would term “neither pleasant nor unpleasant.” I started to drink liquids without the Thick-It. I have to be careful, but I’m getting them down. I’m doing fine at the conference because I’m only listening. Often at these conferences I speak. With spasmodic dysphonia that was always a stressful challenge. Now it’s impossible. But I’m looking forward to speaking again. Think I’ll be a great speaker when I eventually wind up with a non-spasming voice.
With a half dozen colleagues from Asia, we fly together to Baltimore, for the other conference that we all need to attend. I just bought a giant 30 oz can of Thick-It before I left Las Vegas that I’m dragging with me, but I don’t think I’ll even need to open it.
Apart from having my relatives take me to too many loud restaurants, where I could only be heard by the person next to me, I spent my time relaxing and mostly doing nothing. I brought Thick-It to the restaurants in a plastic bag. I’m not sure if bringing a plastic bag of white powder into a public place is really a great idea, unless maybe you’re Charlie Sheen. My Aunt makes these really thick fruit smoothies for me, which are delicious, healthy and really easy to swallow.
The first 8 days after surgery was Chinese New Year so I didn’t need to be working. But I’ve been working remotely, keeping up on e-mail and staying in touch with the office the whole time. I took a nap in the afternoon each day – I seem to need to – and I’ve been sleeping at least 8 hours each night (which I also seem to need).
I have a little more voice than a week ago, though it is still very weak. I’ve been drinking a lot of smoothies, which are easy to get down. I can eat essentially anything now. My Steri-Strips are starting to half come off, and I have a beard now because I haven’t been shaving.
Clean shaven again. Bet you can't see the scar!
Today with guidance from Dr. Jennifer Long, I used a washcloth and some soapy warm water to gently help the Steri-Strips ease off. I then lathered up and shaved. It’s a bit of a funny feeling shaving my neck because it’s still numb so it was slow going. I managed to shave over the incision – carefully and slowly but without any problems. It’s nice to be clean shaven again.
"Some day, and that day may never come, I will call upon you to do a service for me."
I checked into the conference hotel, where I’m now bumping into 320 of my colleagues from the US that I haven’t seen in more than a year (I used to work in our New York office before moving to China). I warned many by email that I would have no voice, but for others, it’s still a surprise. My typical line is, “I feel better than I sound.” They ask if I have laryngitis, so I tell them I had surgery to fix my voice, then ask, “Doesn’t it sound great?” Then I tell them it will take a few months and say that my “Godfather voice” makes me more effective with customers. And then I do my best Marlon Brando as Godfather impression, “Some day, and that day may never come, I will call upon you to do a service for me.” Everyone laughs.
I’m in a loud, noisy place. I’m “yelling” and people can barely hear me, but everyone’s having a good time.
Warm, beautiful days, with skiing just an hour outside of LA. I really should move here.
Dad and I drive to Las Vegas. We stop half way at Burger King and I have an Angus Whopper or whatever the heck they call their premium burger. It’s really good, really disgusting and totally unhealthy all at the same time. I finish it off in no time and wash it down with a milkshake, which is really easy to drink, plenty thick without having to use Thick-It. Normally I can do a 5 hour drive easily on my own, but I got really tired, so Dad took over after 3 hours, while I had a nap.
We make a great father and son team: I can't speak and he can't hear!
Since we’re on the way to stay with relatives in Las Vegas (I have a conference 6 days from now in Las Vegas, so decided to stay with relatives for a few days), we stopped to pick up a little gift. Dad’s ears had clogged up so he was having trouble listening to my non-voice. The guy behind the counter didn’t know what to make of us, so I said, “We make a great team – I can’t speak and he can’t hear.” That led to laughs all around.
One thing that will help you get through this period is to have a good sense of humor about it. The good news is that in a few months, I should (hopefully) be permanently relieved from the symptoms of spasmodic dysphonia. The bad news is that my voice is now worse than it’s ever been. But in a way, that’s okay. People understand surgery, and my voice is obviously not functioning. People don’t understand spasmodic dysphonia, and it was stressful to continually try to “hide” the problem.
I had breakfast, showered up again, had my last antibiotic by IV and was about to leave when lunch arrived, so I had lunch. The nurse was doing a great job of yelling at the catering staff to bring me 10 packets of Thick-It with each meal instead of just three. I’ve been managing to eat with less Thick-It so I managed to build up a surplus of Thick-It packets.
Back at Tiverton with Steri-Strips over the incision
They finally removed the IV from my hand, which felt great. I changed into my street clothes and was taken in a wheelchair (regulations) to the pharmacy (which is in the same building in the basement) to pickup my antibiotic, Prednisone steroid, Colace, Percocet pain killer and Nexium for reflux (I’ve never had reflux but it’s a precaution to protect the surgical site). Then they wheeled me to the front door and, together with Dad, we walked back to Tiverton House (about a 10 minute walk). There’s a shuttle or you can also take a cab, but it was a nice day and I felt up to it.
I went across the street to Ralph’s and stocked up on Yoplait strawberry pudding which is really easy to eat. I was also told that Ralph’s had “great chicken dinners” to go so Dad, Craig and I went over to check them out, and ate it at the Tiverton house lounge. “Great” was probably an overstatement, but it was much better than that mush I was eating in the hospital, and was my first real meal since the surgery. I can now eat just about anything as long as I chew it fully and swallow carefully. For beverages I still need the Thick-It.
I’m taking my medicine by opening up the capsules and mixing them into the Yoplait yogurt. In general, this is not an advisable technique since with some medicines this could result in a concentrated dosage. But I’m a little freaked out about swallowing capsules whole, and for the antibiotic and Nexium capsules, this method is works just fine. The Prednisone is in small tablet form and poses no problem when I eat it with yogurt. I don’t seem to need and thus don’t take any of the Colace or the Percocet.
It feels good to be out of the hospital. I don’t have much voice, but it’s more than I expected. If it’s quiet, people understand me. My wife and kids understand me by phone or Skype. If I need to talk to someone briefly in public, I just say, “Sorry I lost my voice”. They assume I have laryngitis, and it’s no problem.
I bought several boxes of tissue to deal with the phlegm, but they went unopened, as the phlegm has largely subsided.
Dr. Berke and Dr. Long came to check on me in the morning. Doing fine – I have no pain and I’m getting the hang of eating. With Thick-It I can now polish off my meals in about half the time it took the day before. My voice is about the same, maybe ever so slightly better. I’m walking the halls quite a bit.
The gauze around my neck came off to reveal Steri-Strips over the incision line (about 4 or 5 inches long just below my Adam’s apple), but still in the area where I shave. I noticed that my neck is quite numb from above the incision line to just below my chin. This is normal and will go away in a few months.
I probably could have been discharged on this day (and another guy who had the operation on the same day was discharged today), but I found the hospital to be comfortable, and a bit nicer than Tiverton House, so decided to hang out. (Don’t get me wrong – Tiverton House is a decent place to stay, but since I now live in China, I have grown accustomed to five star hotels for about $120/night, so Tiverton House at about the same price with its outdated décor and 1990s-style floral print bedspreads wasn’t beckoning me to return immediately.) So I stayed one more night in the hospital.
The IV in my hand is starting to bother me a little, but I’m not eager to start taking medication orally, so I’ll stay on IV for one more day and get my medication that way.
That’s grape juice on my spoon. I went a little overboard with the Thick-It!
They brought me breakfast, consisting of clear liquids: chicken soup, grape juice and tea. I added Thick-It to everything. Note that they’re quite stingy with the Thick-It packets at the hospital so I had to keep ordering more. They would bring me 3 packets per meal when I needed about 10. Word to the wise: have someone sneak your own can of Thick-It into the hospital just in case. At first it was a bit tricky to swallow but I managed to get through breakfast. Dr. Berke stopped by and showed me a few tricks to help swallow, which helped. Lunch and dinner (with similar “cuisine”) got a bit easier. Definitely can’t drink fluids, so the Thick-It is important.
Compression bandage already removed, just gauze now.
The residents came in and removed my compression bandage and replaced it with a large piece of gauze wrapped around my neck. It’s not uncomfortable. With the help of a nurse, I walked around quite a bit on the first day. My voice is about the same as day 1: weak and croaky, and the croakiness is more pronounced if I have a little fluid/phlegm in my throat. I had a headache at one point, but no pain at the point of surgery.
I was transferred to a private room finally. The private rooms at UCLA Medical Center are quite nice, and feature both a couch and a reclining chair for family or friends that want to visit. There are no visiting hours at UCLA Medical Center; family and friends are welcome around the clock. I got a little more sleep the second night, but still using the suction, and/or tissues to deal with the phlegm. They gave me some liquid Colace (stool softener -- typical after general anesthesia) which I mixed into some thickened water – it tasted terrible.
I read on Scott Adam's blog (he’s the Dilbert creator that had the same operation a while back) that the first two weeks would be “highly unpleasant.” I found the first day to be somewhat unpleasant, certainly not “highly unpleasant.” In fact, the most unpleasant thing was eating that horrible tasting Colace mixture – the other stuff wasn’t all that bad, maybe just because I was expecting it to be worse.
Pre-Op: Arrived at the hospital at 7:30am for the 10am procedure. Something I had read said leave everything in the hotel, so I complied and left my insurance card there. You should definitely leave rings, watches and other valuables at home or at your hotel, but definitely bring your ID (driver’s license) and insurance card. After some paperwork, I was shown to the pre-op area where I changed into a hospital gown and they prepared an IV on the back of my left hand. So far everyone has been friendly, polite and professional.
Operation: There was another SLAD-R spasmodic dysphonia surgery procedure scheduled before mine, but Dr. Berke had another procedure that morning before the first SLAD-R procedure, so I finally was headed toward the operating room at about 2pm. I was getting really hungry by that time as I had been fasting since my “Last Supper.” The last thing I remember is being wheeled down the hall, and talking to the anesthesia team. I recall telling them, “I feel great but this anesthesia stuff isn’t having any effect on me at all.”
Post-Op: I woke up about five hours later at about 7pm in the recovery room, and heard that everything went well. I’m happy and relieved to have the operation behind me. I have a tight compression bandage around my neck, but it’s comfortable and there’s no pain. I had a very slight, weak and at times croaky voice after the operation. I had expected that I would only have a whisper after the operation, so I am pleasantly surprised to find that I have a bit more than that. I seem to have a lot of phlegm and I’m periodically using a suction device (similar to what they use at the dentist’s office) to remove it from my mouth, as it’s kind of hard to swallow it. I didn’t eat or drink after the operation on this day but was no longer hungry, I guess due to the IV. Private rooms were in short supply so they transferred me to an “observation room” for the first night – as far as I knew, it was the private room and was fine with it. It was a bit hard to sleep because I kept using the suction to get rid of the phlegm.
Dad and I drive around LA. Beverly Hills is beautiful and the weather is perfect despite the rest of the country suffering under unprecedented cold and snow. We blow $12 for tea and coffee at the Polo Lounge in the Beverly Hills Hotel. (We had shed our rented Toyota up the street as you really shouldn’t pull in to the Beverly Hills Hotel in anything less than a Mercedes S-Class). The deep blue skies and palm trees make me decide to move to California after I’m done with China.
We meet Dr. Berke and his clinical assistant Dr. Jennifer Long in the afternoon. I have a lot of questions, and am still weighing whether to do unilateral or bilateral. I eventually decide on bilateral. The recovery is a bit more difficult, but I only want to do this once.
Dad, me and Craig at my "Last Supper"
Dad, Craig and I go out to dinner for my “last supper.” We’re at Palomino’s just down the street from Tiverton. Nice restaurant. We have a small celebration of my dad’s 80th birthday which I missed the week before. I have a glass of wine because Dr. Berke said it would be okay, and maybe it will help me get a better night’s sleep.
Craig (who is unmarried) tries asking the pretty waitress out on a date by leaving her a note on the bill. He never hears from her.
I’m looking forward to the next time I’m in a nice restaurant, speaking loudly and drinking wine. I guess it’ll be a while…
Craig and I go to LAX to pick up my dad who turned 80 last week. He looks and acts like he’s younger than me and flew out to help me through the operation. My wife and kids are staying in China. We have lunch at a nice hotel on the beach in Santa Monica. Jetlag and anxiety about the operation are preventing me from getting a good night’s sleep.
I landed in LA after a 10 hour flight from Shanghai. I’m from New York, but moved to Shanghai 15 months ago. It’s nice to be back in the USA, and nice to be in California, but I’m filled with anxiety about the operation. I try to check-in at Tiverton House at 10am, but they tell me to come back at 3pm. I go have breakfast at Denny’s down the street, then call my childhood friend Craig who lives in LA and we go hang out at the Getty Museum, which is beautiful.
Here is a sample of my pre-op voice from about a week earlier. My spasmodic dysphonia varied quite a bit and this was on a “bad voice day” with minimal effort on my part to avoid the spasms.
