MVD Diary - Mike Frey
Tuesday, May 18,1999 - Pre-Op Testing:
My first test of the day was an EMG. In this, the doctor connects 2 electrodes (needles) to your face with various monitoring devices attached elsewhere - in my case, various places on the left side of my head. Insertion of the electrodes is not painful - far less sting than Botox injections.The electrodes are connected to a machine that registers the "short circuiting" of the HFS with a clicking sound. I was asked to squeeze my eyes tightly shut and purse my lips. Of course, this set off the machine. Clicking, humming, and buzzing, each sound was associated with the "misfire" of the nerves. I asked if the machine would make that sound if it was connected to the "good" side. "No", was the answer.
The doctor patiently explained how, in the case of HFS, the offending blood vessel pushes against the nerve bundle (but we all know that) and causes the short circuits. For example, each time my eye blinks, the signal is sent to my mouth as well. And vice-versa. You could see the impulse blips on the radar screen (as I called it) that showed each eye movement would have a matching mouth movement.
The doctor called out a series of numbers that made no sense to me as a nurse recorded them. This test lasted about 20 minutes, including the question and answer session.
The second test was audio testing. Similar to the tests we used to get back in school, you are in a soundproof room, earphones are inserted and you raise your hand when you hear the barely audible tones. I was told that my hearing was normal, so I guess all those years of high volume rock and roll have not damaged my hearing. I was told that this test would be repeated after the MVD surgery to check and see if my hearing was affected.
Next came the BSER. I was told what BSER stands for, but the name was long and I forgot it. This was an easy test. Monitors are pasted to the top of your head and each of your ear lobes, then you lay back in bed as headphones make a clicking sound, first in one ear, then the other. I was told that this test was to check the signal from brain to eardrum. Since this nerve is in close proximity to the affected nerve, they monitor this closely during the surgery to minimize the risk of hearing loss through nerve damage. Apparently, the nerve leading to the ear is a particularly sensitive one, and making sure it doesn't get damaged is one of the priorities during MVD.
Last test of the day was the History and Physical. It is also the time to meet the Doctor. Dr Kassam wil be performing my MVD. He explained the surgery, the risks associated with it, and he also has a negative opinion on Botox. Although "safe", he explained that Botox injections and the muscular paralysis that comes along with them are more permanent than I was led to believe. Although my smile is now much straighter than it was with the 45 unit Botox injection a year ago, it could possibly never be perfectly straight, due to the Botox - not the HFS or the MVD.
Tomorrow: MRI in the morning, Pre-Admission testing in the afternoon. My MVD is scheduled for Thursday morning.
Wednesday, May 19,1999 - Day before MVD with more Pre-Op Testing:
Today I only had 2 tests. First one was a MRI in the morning. I was tired and took advantage of the time in the MRI machine to take a nap! Some magnetic compound was added to my bloodstream and more MRI's taken. More Naps.This afternoon, Pre-Admission testing. X-ray’s of the head and chest from various angles. Donated various bodily fluids for more testing (painless again). Then, an ECG. This was so simple that the preparation took more time than the test itself.
Finally, all tests complete as of 3:00PM. At this time, I still did not know what time my surgery was scheduled for, nor had I received any special instructions for what to do in preparation for it. I was given a phone number to call and, by the time I got back to my hotel room, the nurse had left for the day. Luckily, she had left me a message telling me to be at the hospital by 6:30AM, use the "special shampoo" (which, by the way, comes in the very same type of container that my urine specimen went in. Looked almost the same color also (haha).
Surgery is scheduled for 9:30AM. I'm still not scared. Of course, we'll see how well I sleep tonight.
Thursday, May 20, 1999 - "MVD-Day":
Up at 6:15AM, I am supposed to be at Montefiore Hospital between 6:30 and 7:00 AM. Quick shower, into my clothes, and away I go. The waiting room is full of people. Sign in, take a number. Wait. Wait some more. After an hour or so, I'm told that Dr K is running late. I fall asleep in the chair in the waiting room.Finally, my name is called. It's time! I am ushered into a room, the obligatory gown is given to me, special socks that look like panty hose, and after a few questions and forms, I am wheeled into the pre-op room. It's about 10AM. An IV is started and immediately, I am given something that is supposed to calm me. I asked for a Zima. "Here's your Zima, Mr. Frey" the man says, and after a minute or so, it feels like 4 Zimas. Then I am wheeled into the operating room. A mask is placed over my face and I am told to breathe deeply. Good Night! That's the last thing I remember.
5:00PM (approx.), I awake in a dim haze. Dr Kassam is there, along with several members of the surgery team. He tells me that my case was an especially difficult one, as there were 2 arteries compressing the nerve, and one of them was entangled in the nerve that goes to my left ear. He whispered into my left ear. Nothing.
We had discussed the possibility of hearing loss in the event of damage to that nerve, he gave me an example where he did MVD on a patient who was a violinist. When he saw how much danger the hearing nerve was in, he carefully worked around it, and the results of this person's MVD was not 100%. The man explained to him afterwards that he would rather have lost the hearing in one ear and had successful HFS cure, that, although a violinist in an orchestra, he was far more concerned about his appearance. He could still hear his music with one ear. I agreed, be aggressive, if necessary. Dr Kassam told me that this was one case where, had we not discussed it beforehand, after seeing the hazards, he would have suspended the surgery, awakened me, and asked what I wanted him to do.
But, the spasms and twitches were gone completely. My face was "quiet", and I'm SPASM FREE. Better news on the hearing comes a little later. Now, having been warned that "You will feel like you've been hit by a truck", well.... it felt like I had been hit by a truck, maybe a train. As the anesthesia wore off, there was not much pain, but I was very tired. Lifting even my arms seemed a major task. Standing up was not even an option for the first few hours. I sat up a few times, but each time, collapsed back in dizziness and nausea.
I did walk to the bathroom (with help) at 10:00 Thursday night, to wash myself and brush my teeth. By this time, I had a headache, which I was asked to rate on a scale of 1-10, with 0 being no headache and 10 the worst (this question was repeated numerous times over the next few days). I said "Maybe a 4". The rest of the first night was spent in bed, sleeping fitfully, I took regular Tylenol every 2-4 hours, which helped. I was connected to a variety of machines. One IV in my hand was being fed automatically by a machine behind me, another probe in my wrist was monitoring something, I don't remember what, and I had a device on one of my finger tips with a glowing red light (looked like "E.T.") which I believe was monitoring my pulse and oxygen levels. Their was also a pair of inflatable stockings on my legs that inflated, then deflated, every minute or so. This was to keep the blood flowing through my legs and not stopping there.
Friday, May 21, 1999 - , The Day After:
By late morning, my headache had developed into a pounding, throbbing ache, including my spine. Doctors who examined me told me that this was probably due to pressure build up in the cerebral and spinal fluid, and that a lumbar puncture would relieve this pressure. Finally, one of the doctors recommended Toradol, and I was given this. After an hour, the relief was almost complete, and once again, I was able to sleep for a couple more hours. When I woke up, the pain was not so bad, but the weakness, dizziness and nausea were still present. I was brought regular hospital breakfast, lunch, and dinner, but could not eat anything at all. I managed to drink one small container of Orange Juice.
Friday night at 8PM, Dr. Kassam stopped by again. I was feeling a bit better, and we discussed my hearing. I described some sensations that I was feeling - ringing noises, small popping sounds, and the fact that I was "annoyed" by loud sounds, such as a toilet flush. His face brightened, and he said that these were all classic symptoms of a bruised nerve and fluid build up, and now his confidence that my hearing would return had gone up.
Saturday, May 22, 1999, Two Days Post-op:
In mid afternoon, I am feeling much better (relatively speaking, of course) and it's time to move me to a regular room. So, I am taken on a ride across the hospital and up 2 floors to my new home. It's a private room, and things are much quieter here. All of my IV's are now disconnected. I celebrate by taking a nap. When dinnertime comes around, I am finally thinking about food again, but nothing shows up. At 7PM, I call the nurse and request something to eat. Jell-O, something soft like that. Pudding shows up, and I manage to eat about « the cup and then my stomach says "enough".
In the evening, my headache is back, not quite as bad, and I feel like I've slipped backwards a bit. I notice some twitching in my eye also and tell the next doctor who stops by. They tell me not to worry - that many, if not most - patients experience some amount of HFS symptoms after MVD. I'm disappointed, since I woke up post-op completely without spasms. Oh well. Another price to pay. My left ear continues to make gentle ringing sounds, sometimes it sounds like there are carpenters at work hammering in a new wall somewhere, another sound is like the rhythmic hissing of escaping steam, like one of those old steam trains. I take these all as good signs, but my hearing in my left ear is nonexistent.
At midnight, a headache, and unable to sleep, I request a Demerol injection. "Sorry, that is not prescribed for you anymore". (Grrrrr). I ask about the Toradol. "No, that's not on your list either. We'll have to ask one of your doctors". But none are around to ask, so I settle for Percoset tablets.
Happy to report I'm SPASM FREE, but wow, what a price you pay!! Weak, headache, shaky. Dr Kassam told me that mine was "one of the worst" cases he's seen. I had 2 arteries causing problems, he fixed them both.
Sunday, May 23, 1999, Three Days Post-op:
The bandage on my incision site is removed in the morning, and I am now cleared to take a shower. Now that I can feel the stitches, I can also feel how much hair they removed. Not much - only about an inch away from the back of my ear. My remaining hair pretty much covers the incision site, I can't see a difference in the mirror, and visitors tell me that you have to be looking for it from behind to spot it. Another piece of good news is that this area does not hurt at all. It was sore for a while, but I've been able to lay on it without discomfort, and am still able to do so with the bandage removed. My shower is welcomed, I even wash my hair (doesn't hurt around the incision), but that activity wears me out also.
Sunday afternoon, and I can now walk around the room, although I am very unsteady on my feet. Each 10-foot walk seems like a miracle. It also takes what little energy I have away and I need to rest afterwards. The doctors agree that I should stay in the hospital one more day. At one point, I go a full 10 hours in between Toradol shots, as my headache has diminished markedly.
Still not much appetite. Still dizzy when I walk. I am laying flat on my back, still, I feel almost "normal".
By Sunday evening, I actually plan out my meals for the next day. I ask for all of the Jell-O type things, frosted flakes cereal in the morning.
Monday, May 24, 1999, Four Days Post-op:
I've been having bizarre dreams - mostly involving odors and electricity. My sense of smell is incredibly acute for some reason. I can smell the perfume on each nurse, however faint, whenever they walk into the room. I can smell lunch coming long before it arrives in my room. I eat again! A major accomplishment.
3:00PM - RELEASED!
I took a shower and got dressed. The nurses brought a wheelchair and rolled me down to the lobby. It's a very cool day in Pittsburgh. I waited at the entrance to the hospital for the blue shuttle bus that will take me to the Family House McKee, where a room was waiting for me. I was given a prescription for Vicodin, a painkiller.
My longest walk so far is from the lobby of the hospital to the shuttle bus. Thankfully, the bus driver took care of my belongings. My room was on the 4th floor of the Family House, I am allowed to be there alone. Checking in seemed to take forever (the staff was very friendly, though). All I wanted to do was get to my bed and climb back in. By the time I was situated in my room, some pain and discomfort had returned. There is a CVS drug store right around the corner, and I decided to take the walk - it's less than half a block away.
WHEW!!! I realized once I was out on the sidewalk that I could barely stay on my feet. I felt like I was walking while very drunk, and I think I looked that way, too. My equilibrium was way off, and I staggered across the street and began the arduous trek to the store. I walked along the sidewalk with my left side to the wall of a hotel, using my hand against it to maintain my balance. Once in the store, my prescription was filled and I walked back to the Family House. I found that if I walked with a severe limp, it looked (to me, anyway) like I was recovering from a leg injury rather than looking like I was some drunken fool walking down the street. My half-hour trip required a 3-hour nap to recover from. That night, I walked a shorter distance to mini-mart 2 buildings away to get something to eat, then I slept all night. The Vicodin was doing a good job on the pain, which at this point was not too bad.
Tuesday, May 25, 1999, Five Days Post-op:
I continued to gauge my improvements in percentage of feeling "whole" again. It's been 5 days, and 50% seems appropriate. I am starting to doubt that the dizziness that I am feeling will permit me to say I'd be back to 100% after the 10th day, although everything else (other than the hearing) kept getting better.
Wednesday, May 26, 1999, Six Days Post-op:
I'm 60% back to "normal", have no pain, but am dizzy and very! tired. I sleep more than I am awake. I saw my incision in the mirror today, and it doesn't look bad at all. My hair is only collar length in the back, and unless it's pulled to the side, it still covers the scar.
Thursday, May 27, 1999, Seven Days Post-op:
The last thing I had done before leaving Pittsburgh was a return to the Eye and Ear Institute for a hearing test - and unfortunately, I scored a "zero" in my left ear. (Dr Kassam told me that, during the MVD, when he moved the artery from the 8th nerve, the BSER reported a 50% drop in the eardrum to brain signal. It dropped farther when he made the final move to insert the Teflon pad, but that the nerve was not severed and that the machine did not drop to zero - a good sign, he says)
The 4 hour drive home from Pittsburgh was uneventful, although each bump on the PA Turnpike (and there are lots of them!) brought on the dizzy feeling. I slept about half of the time during the trip back.
2nd Week Post-op:
On Monday (Memorial Day) I decided it was time to get out and see if I could golf. I know that I was pushing things, but felt well enough to give it a try. No one thought I'd last a whole round, but I did. I could have even played some more! I felt no pains, but the equilibrium problem really threw me off my game.
On Tuesday - 11 days post-op - I drove my car. Although it was 2 days before the recommended "OK to drive" date, it wasn't too bad and I felt safe behind the wheel. The greatest problem was stopping at intersections and turning my head from side to side - not because of the incision pain (there was none), but any rapid head movements bring on waves of dizziness. Otherwise, by now, the dizzy feeling only exists when I walk.
The weekend of June 5th - now just over 2 weeks after MVD, I played golf on both days and my sleep is down to about 12 hours a day. I decided to return to work on Monday.
3rd Week Post-op:
An inventory of how I am feeling:
4th Week Post-op:
Stacy Caldwell (Brenneman - who lives just 10 miles away!) and I went to UPMC on Tuesday, June 15th - she for an HFS evaluation, and for me, a post-op checkup. While in the waiting room, Stacy and I met several other patients who were there for consultations on a variety of similar afflictions - mostly Trigeminal neuralgia. I was the center of attention for awhile, since I was a new veteran of MVD - and showed off my scar, which is now invisible underneath my hair.
Dr Kassam marveled at my recovery (although I'm not sure whether or not he was doing it just to make me feel better). I asked if I could meet Dr Jannetta, and sure enough, he popped in to see me! He was already familiar with my surgery (he said "Your operation was more complicated than most") and he also told me that I should expect a satisfactory recovery. He is quite charismatic and I was impressed with his manners and demeanor.
I was told that it will take "weeks, even months" of recovery from the loss of equilibrium and hearing.
So, new inventory of current condition:
5th Week Post-op:
At this point, if I had my wishes, I would rather:
Permission granted the HFSA to post MVD Diary on website.
Mike Frey, September 20, 2006