MVD Diary - Joe Stepien
Pre-surgery:
I haven't really read too many descriptions of the periodicity or progression of spasms for the people belonging to the HFSA, so I thought I'd include a description of mine and see how they might correlate to anyone else.
I've struggled with having the surgery for a while, but my spasms have gotten worse in the past year or so (started in 2001 or '02). Mine happen on average about every 3 minutes. They start with a twitch then progress to spasms at greater frequency until I reach full spasm. At full spasm my left eye is half closed, my mouth is tugged to the left and my neck becomes 'corded'. The full spasm then generally releases followed by a few twitches and then calm again. On a really bad day, the calm is replaced by an immediate climb to a next full spasm. From start of initial spasm to release lasts anywhere from I'd say 45 seconds to 1 1/2 minutes. On a bad day, it's the latter figure. That leaves about 2 minutes until the start of next episode. As many who have it knows, it can be quite maddening. Those who don't have it, usually offer that they don't really notice or it seems far less frequent. I've tried to make some sort of correlation to diet, electrolyte level, fatigue, eye strain, hydration level, etc over the years but I don't think a pattern ever emerged. In the end, it's a mechanical issue I guess. Accepting that and that the spasms may even become worse I decided to have the surgery and accept the risks of hearing loss, temporary (or permanent) palsy, etc.
Tuesday, August 25, 2009 - Day of Departure:
Surgery is scheduled for Wednesday with Dr. Sekula and Dr. Jannetta of Allegheny General Hospital, Pittsburgh. My dear wife Pauline, who is a nervous wreck about the whole thing, my son Michael and daughter Katya accompanied me on the drive to Pittsburgh from northern New Jersey. To begin the trip and relieve some stress I asked my wife to name our adventure. She's pretty good at coming up with names on the spot and she christened it "The Hole-in-the-Head Gang heads West". That's a good start. On the way, we forgot to ask God for travel mercy and we ended up in a sticky situation with a flat tire on Route 80 West, milepost 183. I knew I should have had a closer look at that right rear tire pressure before leaving. On the side of the road with a narrow shoulder to a guardrail. Other side of guard rail is a couple of feet and then a steep grade of brush. Being a AAA member I called them and spent the next 25 minutes speaking to different representatives describing our location. My first attempt at using them in maybe 10 years as a member. I told each rep mile post 183, 80 West PA, to which one replied, "But that could be a mile to the next marker". Hello-o-o-o. That's the general idea of a mile marker. They're asking me what town I'm in over and over again. Aren't they supposed to be professionals? Asking if I have license and registration (I'd already given my membership number, name, address, at least twice), the license plate number, on and on with imbecilic questions while tractor trailers are roaring by within a few feet, blowing your hair back. I told them to look on googlemaps.com. I eventually gave up on them and called 911. Trooper arrived in maybe 10 minutes. Having some protection from the trooper's vehicle I proceeded to change the tire. It's a Volvo wagon and the jack inserts at center and lifts both wheels off the ground. Being on a slight grade, this, of course, caused the car to roll off the jack. Jack now worthless. Trooper has no jack. But he knew a AAA truck nearby and that guy arrived and changed the tire in a few minutes. In between all this, AAA, always working on a solution, connects with a AAA tow truck operator and he tells me he can't find me. He's looking at milepost 220 on the east-bound side. AAA was fairly useless in this regard. I felt like Jack Lemmon in the movie, "The Out of Towners", ready to take names. But finally we were on our way - still an adventure.
Tuesday, August 25, 2009 – "MVD DAY":
Stayed at Hampton Inn in Greentree, PA, which is supposedly 6 miles from Allegheny General Hospital Left on the 7:00 am shuttle to get there for 7:30 am check-in. Pittsburgh appears to be under construction everywhere. There are all sorts of detours. Thank God for the shuttle since my wife could never have negotiated her way to the hospital, even with the GARMIN we had. Lady Garmin was always a little late on the instructions especially considering that there were lots of diversions - RECALCULATING. The Hampton Inn shuttle drivers were great and everyone was incredibly nice and accommodating. Being from the New York metropolitan area, kindness appears to be just an afterthought in New York/New Jersey. People in Pittsburgh, WITHOUT exception, were all very nice . This made things so much easier for my family and me. Finally made it into pre-surgery on a gurney where I was marked up and asked numerous times what was being done - LEFT Retromastoid Craniectomy with Microvascular Decompression for Hemifacial Spasm (in the pike position) was my reply. I've been in surgery before (appendectomy, an injury in 1982, biopsy) and was expecting the usual delay so it didn't surprise me that the clock read 10:38 and I still hadn't seen the surgeons - Dr. Sekula or Dr. Jannetta. It's a lot like air travel except with scalpels and drills, hurry up and wait. The anesthesiologist introduced himself and described what he'd be doing. I just said make sure I'm fully anesthetized (having watched some horror medical documentaries about people who are paralyzed but can feel everything) and that I wake up. He explained that I wouldn't be paralyzed anyway since they needed the muscle and nerves to respond to inductions to address the compression. This was reassuring. I expelled another sigh of relief while I watched the clock. Dr. Sekula, the doctor I consulted with back in May, came out and informed me that Dr. Jannetta had cut two tendons in his hand in the early morning and would be unable to attend the surgery. He asked if I still wanted to go through with it. I know that Dr. Sekula has done many of these operations and I was comfortable with him performing the operation. But, after a quick last trip to the bathroom, I asked him if HE was ok with that. He said he was so that was that. Dr. Sekula would perform the surgery (which I think was the plan from the beginning anyway with Dr. Jannetta lending his vast experience and skill, had he not cut his hand). So I'm still laying there squinting at the distant clock while remarking to God that boy, he sure does like to throw me some curves to test my resolve and faith. The last I remember it was 10:58 am. The next thing I remember was somebody prodding me as I was wheeled from the recovery room, presumably. I saw a hazy image of my son and daughter, with my dear wife looking now very, very relieved. I immediately noticed, even through the haze of the anesthesia and the nausea, that I was no longer having spasms. Dr. Sekula whispered something in my left ear and I heard it clearly so my hearing was intact, thank God. Dr. Sekula later personally sat down with my family, he in between my wife and family and drew a diagram of the offending artery and the remedy. He is a very personable fellow and my family was very comfortable with his demeanor and character. I was offered a swab of an alcohol wipe to relieve the nausea, while the room was spinning, and as I was wheeled to my room. This apparently worked and I arrived there without barfing. My head felt like I had been in a fight. My neck was sore, apparently from the positioning of my head in the heavy metal halo to keep it fixed in place while they drilled through my cranium. All in all though - not too shabby. AND the best thing of all - NO MORE SPASMS! I was given some Demerol for the pain and I took maybe 2 more injections of that before I switched to something less powerful. I’ve been on Demerol before and I don’t like it, particularly when you ‘come down’ from it. It gives you, or me anyway, a jolt similar to the jolt you sometimes feel when you begin to fall asleep. Unfortunately, the Percocet instead apparently made me nauseous. The next couple of days were spent just trying to get some food down. Food was still very unappealing but didn't really make me nauseous except for the Percocet. I tended to feel better when I had something else in my stomach. Oh, and the food wasn't very appealing to a healthy person. In my experience with hospitals, it seems that a good, healthy meal would be very, very restorative to the recuperating patient. The meals are instead usually over-salted, bland, and unpalatable which you'd probably pass over at any school cafeteria. Blech. Well, at any rate, I eventually switched to just Tylenol and took some anti-nausea medication, was able to eat some cereal, fruit, juice, milk, etc. feeling good enough to be released on the Saturday following surgery.
Saturday, August 29, 2009 – Day 4 Post-Op - ICU:
We returned to the Hampton Inn, on the shuttle and continued our unhealthy eating of the available fare locally. I suppose we could have found a better restaurant but there was also a budget to consider for hotel, meals, etc. I really, really missed the cooking of my wife and my teenage daughter Katya, who may also be an aspiring chef.
August 31 - September 1, 2009 – Days 6-7 Post-Op:
Went for my follow-up post-op visit with a Dr. Cheau (?) at Dr. Sekula's office. Both Dr. Sekula and Dr. Jannetta were now on vacation and Dr. Jannetta was receiving an honor in Boston, I believe, for World something-or-other, another accolade to a distinguished career. I was lucky to be in the care of his associate Dr. Sekula. Nothing too remarkable about the surgery in retrospect, except for perhaps a very distant ring in my left ear that is only audible when the room is completely quiet. The Dooctor and Nurse, Anne Wilkinson, explained that this would eventually resolve. Since I have had not a single spasm, except those I unfortunately dreamt about one night, I would be happy even with the slight ring rather than the "'demon". I still have dreams about spasms and looking in the mirror and seeing my face contorted. I suppose, since it had become such an overwhelming aspect of my life, especially in retrospect with the spasms now gone, that is to be expected. I did ask Dr. Cheau though, there must be hundreds of places in the human body where arteries pass in close proximity to nerves, why is it that this poses a problem? He replied, that although the former statement is true, such close proximity is not typical. I also asked if the offending artery is immediately apparent when they finally get an initial look. He replied that it is. This was a bit of reassurance that they had located the offending artery along with the accompanying EMG verification. So I could probably stop entertaining thoughts of it returning and rest a little easier. Ah, rest. What a beautiful thing to sit there quietly and not twitch. So much we take for granted. We returned home on Tuesday, with me, 6 days after neurosurgery (nothing but Tylenol for the pain), driving the entire 375 miles back home to NJ, while my much relieved wife, Pauline, breathed another sigh of relief. GOD IS GOOD! Thank you Jesus. PS: I'd like to thank the entire staff at Allegheny General Hospital, including doctors, nurses, nursing assistants, physician assistants, orderlies, everyone, who were remarkably kind and compassionate for my entire stay. God bless these caring people. Thanks to all those who prayed for me and my family. Update Arrived home safely and began my new life without spasms. However, it’s not without some bumps. I noticed that food tastes somewhat bland and towards the over-salted, bitter end of the taste spectrum. The tip of my tongue seems to be a bit numb and not quite as sensitive to taste. Sweet things, particularly chocolate, don’t have the same pizzazz. On the 8th day following my MVD surgery, in the late afternoon/early evening, I noticed that I wasn’t able to whistle or boo (occasion arose at a town-hall meeting for healthcare) without my mouth distorting somewhat. The next day was a bit worse and I thought that I was going to be one of the patients that suffer post-surgery delayed facial palsy (DFP). The 10th day it grew worse and I couldn’t move the entire left side of my face. I also couldn’t blink, wink, wince – nothing on the left side of my face. On the 11th day the palsy seemed to have reached its worse. I called my doctor and he prescribed a short course of steroids but this may also have been for the throbbing headaches that arose around the same time from irritation of the occipital nerve during surgery. The irritation of that nerve also produced some jaw pain, a burning sensation in my ear lobe, and some pain/discomfort that wrapped around my incision and to the top of the ear. The pain was aggravated by lying in a horizontal position which made sleeping very difficult and I slept in a sitting up position for a few nights until the steroids reduced the discomfort. After the steroids were concluded after 6 days I had just a faint occasional throbbing but nothing serious. So still spasm free but now having to deal with the facial palsy. One takes an awful lot for granted when you’re healthy and the palsy really drove home how so many people are afflicted in so many ways. Maybe I could really begin to appreciate how thankful one should be for their health, even the smallest of favors, like eating. Eating was a new experience when you can only wrap half your lips around an apple or onto a glass securely enough to not have it dribble down the side or nearly choke on it. Moving food around in the mouth was also difficult. I also had to take care of my eye, which wouldn’t close completely, making sleeping difficult again, and had to keep it well lubricated during the day. At night I had to tape it shut with an eye path along with some nighttime lubricant. But, I could tell day by day that the healing from the palsy was proceeding, if ever so slightly. My initial estimate at the beginning was that it was maybe improving ½ to 1% per day, so if it proceeded linearly then it should resolve anywhere from 100 to 200 days. Fortunately, it wasn’t linear and subsequent days and weeks saw it improving very quickly.
4 weeks Post-Op and 3 weeks post-palsy onset:
I’d estimate I’m at about 65% recovered from the palsy. When I speak with someone in anything above a modest voice, which is tough with a teenage son, my lips still don’t function or cheek still don’t function completely and the palsy is distinguishable. Otherwise, with a blank expression or modest emotion and speech, I don’t think one could discern that I have a palsy. I was also able to move my eyebrow ever so slightly now. At 4 weeks palsy onset, I’d say it’s at about 85% and most people wouldn’t notice the palsy. I still can’t whistle, suck through a straw, or annunciate p, b, or f words without some remaining difficulty or distortion of lips but it’s so slight that, again, no one else notices. I can almost blink the eye independent of the good right eye, but not quite without grimacing. But I’m very, very thankful I don’t have the spasms anymore and the palsy is only a minor nuisance. I’d be more than happy even if I were stuck at this point of the palsy recovery. I suppose that the remaining palsy may slowly, asymptotically approach 100% recovery from this point onward. I’m certainly ok with that too and I’m happy I decided to have the MVD. One thing has become pretty clear – doctors had asked if the HFS ever woke me during the night and my reply was always "I don’t know, I don’t think so. I do awake at night and the spasms are there but I don’t know if they wake me". In retrospect, they did wake me and the HFS had crept up on me so slowly over the 8 or so years (never having had any relief from Botox treatments which I opted not to have) that I had it that I didn’t notice or attribute the poor sleep to the condition. Now, it is quite clear that it did interrupt the duration and quality of my sleep. I now sleep 6-7 hours straight through without waking and I’m in a deep, dreamy sleep. Last year, I also had separate health problems related to my heart (atherosclerosis), in spite of exercising very regularly (resting pulse in the low 40’s) my entire life, eating healthy, and never deviating from my weight in high school by more than 5 lbs. The only exception being an appendicitis episode, when I lost weight. I had 5 stents inserted in 2008 and I now wonder if the stress from the HFS and the lack of sleep may have been a contributing factor. Thanks again to all at Allegheny General Hospital, Dr. Sekula, his staff and the members of this Hemifacial Spasm Association who contribute so warmly to fellow sufferers.