I first noticed a small twitch in my lower right eyelid in 1985 or 1986. I was winter paddling and the eye would occasionally move a bit and blur my vision for a brief second. I figured this was caused by the cold water and therefore didn’t think anything about it. Nor did I think of it for the following five or six years as it never got worse, but was an occasional occurrence that did not bother my lifestyle.

During the interim I had an appointment with my optician. I asked him if he knew anything about the flickering in my eyelid and he offered a suggestion to cut out chocolate, coffee, and any kind of sugar or caffeine. He said he had a patient with the same symptoms and it seemed to work. I tried this for about 2 years and at first it seemed to help. I experimented with it by starting back up with caffeine and then stopping for several months. It finally got to a point where it didn’t make any difference. At this point I was still getting the twitching but not the spasms. Time to see a doctor…..

In July 2001 I made an appointment with Dr. Tucker to help figure out what this tic was all about. He suggested it might be hemifacial spasms and that it might be best to get a MRI to rule out any other possibilities. We tried Neurontin and several other drugs with no or little effect. They only made me tired and hard to move around. I was running a business and attending a lot of slalom races where I needed the energy levels. I just couldn’t do this with the medications and therefore decided to live with the twitching for awhile to see what happend.

I consulted with Dr. Tucker in August 2006. Told him my findings and we discussed the options. He seemed pretty comfortable with me going for the surgery and this put me at rest that I was hopefully doing the right thing. After contacting Dr. Jannetta’s nurse, Ann Wilkinson, we started the tests and I was on my way to MVD.

8/24/06 MRA, 9/7/06 MRI & ABR, 9/9/06 Hearing test

9/15/06 Package with all tests on CD and Doctor’s notes sent to Dr. Jannetta.

10/23/06 Chest x-ray sent to Dr. Jannetta.

I learn today that my dad will be flying out to Pittsburgh for the operation. I’m flying out of Providence on US Air, arriving in Pittsburgh about 7:30pm. I’ll be staying with a slalom racer friend, Natalie. Natalie and I worked out some convenient times so that my schedule would take as little time away from her work as possible. She picked me up at the airport this evening and we went to Outback for dinner, which was quite good. Afterwards we went back to Natalie’s house so I could get settled in for the coming week. I’m looking forward to meeting everyone at the hospital.

Natalie let me use her car so I could get to the hospital for the consultation at 11:30am. Both her house and office are about 10 minutes north of Pittsburgh. The drive was very easy and I found the hospital with no problems. Oddly enough I find I’m not at all nervous during the consultation. I meet Ann Wilkinson who showed me into the consultation room. We chatted for a few minutes and discussed the EMG/NCV, which was set up in a rush due to the surgery change from November 25 to November 2. Five minutes later, Dr. Blumenkopf came into the room and introduced himself. Shortly afterwards Dr Sekula and Dr Jannetta came into the room. We talked about my past history, present health, any medications I’m taking, etc. I could easily see in their eyes that they were watching my spasms going off as we chatted about the operation and my questions to them. Dr. Jannetta did not feel that there would be any problems, considering my past medical history, which as he stated "You are probably the healthiest patient we’ve seen here in 6 months". After a bit of joking around and further diagnosis from Dr. Jannetta, I was sent down to get my last test done, EMG/NCV. This could not be done in Connecticut as the doctors were having a problem with what Dr. Jannetta was looking for from the tests, so Ann and I thought best to have this done in Pittsburgh.

Note: I would strongly suggest that the EMG/NCV be done by a doctor that is very familiar with HFS and what the surgeon will need during surgery.

A day of rest, and getting my stuff in order for the surgery tomorrow. I did some shopping, then hit the local Starbucks and picked up Natalie at work. We ate out tonight, talked of computers, paddling and tomorrow.

Today's the day and even though I’m first surgery for the day, I’m not nervous at all. Natalie and I are up around 5:00am, I have to be at the check in station an hour before surgery, 7:00am. The drive into the city was pretty quiet. We got to the Snyder registration where a girl took down all my information. She gave me an electronic pager for when my number comes up and also a white wristband with my name, DOB, account#, etc. You know, so they don’t get me confused with someone going into the maternity ward by mistake, LOL. Sat back outside in the Snyder registration room with about a half dozen other people who were there for one kind of surgery or another. After about 5 minutes my name is called. Natalie and I are lead through a series of doors into a large room with a nurse’s station in the middle and numerous side rooms with beds. People are scurrying all over the place, but at an odd pace. They are not rushing, but at the same time there is a definite sense of urgency in the air. We are lead to one of the side rooms where I get changed into a wrap around, hospital socks and full length white stockings! This is where the jokes begin. I’m trying to joke as much as possible to Natalie about these stockings. All my belongings are put into a bag to be given to a guard and stored safely until my discharge.

As I’m lying on the bed, the nurses cover me over and make sure I’m comfortable. Several people come over with clipboards to ask me numerous questions and take down my wristband information. I remember one doctor who asked me many redundant questions and I finally figured out he was the anesthesiologist. A young nurse came over and proceeded to give me an IV in the top of my right wrist. I held back a yelp as she inserted the needle and I knew right away that was not going to work. But she continued and another nurse saw my distress. She told the young nurse to take it out and the young nurse remarked that she thought she had found a good vein. I don’t think she did! The other nurse started on my left arm. By this time I was shaking pretty uncontrollably. She asked if I could try to relax and I said I was trying, but I couldn’t stop. I knew now I was nervous. This was causing my veins to contract and made it more difficult for her to find a proper vein. She finally had to give me a local to numb the injection point and get the IV in place. Once in place, she gave me an injection of something, though I never felt anything. Once all was settled and I was hooked up to an IV, Natalie and I gave our "see you on the other side" good-byes, and they wheeled me out to the operating room. I was outside for maybe 5 minutes and finally, the double doors opened to reveal a room with large circular mirrors hanging from the ceiling and medical equipment lining the walls. I thought, "This is my first time in an operating room since I had my tonsils out, almost 40 years ago". I felt a bit dizzy and at one point I remember Dr. Blumenkopf standing next to me imitating canoe strokes and saying something about going kayaking. Somehow I answered "You must truly be a rafter".

I barely awoke with someone yelling at me to move my feet. I could not move, or was afraid to move for fear that something might break. My head was pounding and spinning. The right ear was plugged and somehow I knew my right face was not right. I drifted in and out of sleep, but was constantly brought to the surface by a nurse yelling at me to move this or move that. I began to try to tell them of my head pain by moaning and was told to stop it. Finally I was given a shot of what I hoped was morphine. I was told later that it took them almost three hours to get me out of anesthesia. But also heard it took them an hour and a half. In any case, it took them awhile to break me free from my sleep. I had heard about folks getting sick from the anesthesia and since I don’t get sea sick, it won’t happen to me. I threw up twice right after that thought.

Most of the day was pretty much a blur until they wheeled me into my hospital room. A nurse asked if I could sit up, I was honestly afraid to move for fear that it might cause me more pain than I was already in. So, they slide me over onto the bed. I knew Natalie was there somewhere and seem to recall my dad and her saying hello to each other. At one point, I saw Dr. Sekula looking at me and checking my face. He was looking very intently at me and taking notes. Finally, Drs. Blumenkopf and Jannetta came into the room and began talking with my Dad. Dr, Jannetta came over to my bedside. I had tears in my eyes and was grateful that he was there to explain to me what happened during the surgery.

They found an artery that was looping towards and away from the eight and seventh nerves. The top of the loop was barely resting on the eighth nerve and though they found this was not the problem, they padded this out of the way. Further in, they found a vein under the seventh nerve, and when this was pushed away from the nerve, all the spasms stopped. The vein was cauterized and there was nothing else in the nerve’s area to touch it. It was as Dr. Jannetta stated, "an unremarkable operation". Everything went well except for one thing, and that was the facial palsy. Dr. Jannetta could not figure out why that was happening. The only explanation would be the nerves were over sensitive to the procedure. He gave Natalie a diagram, which is below:

At some point during the day I think a woman came in to ask me what my pain level was based on 1 to 10, I told her it was about an 8. That night I had two cartons of grape juice for dinner. That’s all I could take in as the stomach was unsettled and they needed to give me anti-nausea medication. The pain in my head wasn't bad and I finally surmised they had me on a morphine drip, though I could not really tell, I was sort of numb all over and it was hard to move. Sleep was on and off that night.

I have no idea what time I woke up. But I do know that when I did, I reached for the barf pan. I guess grape juice is not what the body wanted. I was parched and hungry all of a sudden. I must have been running a fever the whole time because I was told I was sweating up a storm during the night, even though I could not tell. They kept telling me to breathe long breaths and cough once in awhile to stave off any possibility of pneumonia. Most of the day again, was a blur. It was all I could do to keep breathing, deal with the head pain and dizziness, and at the same time try to eat something and use the bedpan. What a life this is I thought. Around noon I received a food basket from some online friends whom heard about my surgery. This was quite a surprise. I would have liked to open it up, but my stomach was not in the mood for much food.

I know my dad was there yesterday and only wish I could have been more responsive. After all he’s 85 and flew out to Pittsburgh to see how I was and how things were going. He flew back to Connecticut last night. Natalie was here all day to make sure I got what I needed as the nursing staff seemed a bit understaffed. Bless Natalie and all the help she gave me during this time. I finally got a better handle on the medication they were giving me and at one point the morphine drip was discontinued. I was to be taking Percocet once every four hours, but when the pills wore off the pain was pretty bad. So, I was able to talk a few of the nurses into giving me a morphine shot, and then about two hours later I would take a Percocet. That worked well as it took the edge off right away. I was still running a slight fever the whole day and night. Natalie stayed most of the night until visiting hours were over and made sure I got what I needed to be comfortable.

Natalie is there as I woke up and she helps me eat some breakfast. For the first time since surgery, those Kellogg Flakes are looking pretty good. It takes a little effort to eat them, but with cool milk, they are pretty darn good. Fever is still hanging with me, though it has dropped a little and I’m not sweating as much today. Most of the day goes by quickly as I find no problem sleeping. Food is starting to digest better, but I have to eat carefully as I can only chew on the left side due to the right cheek palsy. Swallowing is a bit cumbersome also, have to make sure its chewed well and washed down with liquid.

I feel a bit stronger today and realize I really need to get up and start walking a bit. I asked the nurses if they could get me into physical rehabilitation just once. Dr. Jannetta and others came around to check on me and see if there was any facial improvement. The doctors are still mystified by this occurrence, but are very optimistic it will improve. For some reason, from what I’ve learned what was done during the operation, I really can’t see any reason why it should not get better. By the end of the day, I’m beginning to walk better but still need a bit of help getting to the bathroom by myself. I’ve been here three days longer than what is the usual case for this type of surgery and one of the doctors asks me if I should go home tomorrow. Reluctantly, and even though the hospital food is not that bad, I agree with him it’s probably time to think about getting out.

The fever has begun to break and I can feel myself cooling down a little. Just after breakfast I’m given my walking papers. Resting most of the day and thinking when I should get up to get cleaned and feel human like. Natalie arrives around mid afternoon with my personals that were placed in storage just before I went into surgery. So now, I get to see myself in the mirror for the first time in days……yuck! What’s the white stuff all over my tongue? I proceed to get washed and taking a comfortable seat at the sink, I give myself a much needed shave. Well, I look a little more human anyway. The doctors come in to give me a once over before I head out. As for the tongue, it appears I have thrush. Nothing serious that can’t be cured by taking some special mouthwash for a few weeks. The drive back to Natalie’s house is a blur as my head is spinning from every bump and jostle. Once there I need a bit of rest before dinner. We have a simple meal of pasta and salad which actually goes down rather well. Natalie sets up a stool in the shower so I don’t have to stand there trying not to topple over. The shower was good and I sleep very well that night.

I spent most of the day in bed and eating when ever I felt like it was a good idea. The stomach has calmed down quite a bit after yesterdays ride, but things still seem like they are moving around. Once Natalie gets home from work, she assists me once again with the shower and makes a great meal of pasta and salad. Second night in row meal, but it tastes even better tonight and I actually finish it! Sleep comes easily, especially after I take a Percocet.

I actually stepped outside by myself today. It was a bit chilly but the fresh air was good. Another day of rest. Natalie put the stool in the tub before she left for work so I could take a shower by myself this morning. It was a bit shaky, but I was able to pull it off. I got into regular street clothes and played a bit on the computer, checked e-mail and found some sites with which to entertain myself.

Arrangements were made for me to fly home tomorrow, after my final checkout at the hospital. I tried to arrange it so that we could get to the hospital, and then have a leisurely drive to the airport and still leave plenty of time for us to get to the terminal. My travel agent friend also made sure there was a wheelchair for me at both ends.

I’d arranged for a buddy of mine to pick me up at the Providence Airport in Rhode Island.

Natalie and I are up early so we can get to the hospital before the 11:00am appointment. I get the wheelchair treatment most of the way inside the hospital and meet with Dr. Sekula and Dr. Jannetta. They are concerned about the facial weakness and plugged right ear, but are very confident it will all come back. What is a very positive outcome is that I don’t have any facial twitching, though the right side is weak and we will know for sure once the seventh nerve comes back. Also, I have complete feeling on the right side and Dr. Sekula checks for this by gently poking me with a cotton swab on parts of the face and eyes. My hearing is there, though very faintly, I can barely hear out of the right side, it sounds like someone is at the end of a long tube, far, far away. Dr. Jannetta has me make faces at him while he holds his thumb tightly against the bridge of my nose. Only my left side moves to these facial expressions, but Dr. Jannetta thinks he can see some movement from the right side that shows promise of the seventh nerve responding. Dr. Sekula gives me a prescription for Percocet and Anti-Nausea medications. I am to have an EMG/NCV in about 3 weeks to evaluate the facial nerve.

Natalie wheeled me out of the hospital to the car. I’m not real steady on my feet, but I can walk a ways with little assistance. Once at the airport, Natalie gets a wheelchair for me to use.

At baggage check, I waited for Natalie to get the ticket, but some folks standing in line helped move me and my luggage up to the counter. Once there we gave the ticket person a letter from the hospital allowing Natalie to pass through security with me. As we headed towards the security check through, an airline captain said to follow him as he had a quick route to get us past the crowds. As it turns out, I still needed to remove my shoes, and leave all my personal articles to the mercy of the x-ray machines. Natalie got in line and I was wheeled into a room where there was a security officer. He asked me if I had ever been frisked while in a chair before. I told him to be careful as I had just come from surgery, as you can tell by the incision on my head. So, as he’s running the metal detector around me, his elbow jabs me in the head right near the incision. You can be sure I didn’t hold back on the expletives including calling him an idiot. He honestly did not know what to do, but apologized and tried to make some small talk to calm me down. Needless to say he didn’t finish the "frisking" after that, and he let me through the rest of security. As I was wheeled out of the door I saw Natalie on the left with all our stuff that went through x-ray. We gathered up all our gear and continued down towards the underground tramway. We took the ¼ mile ride to the airside terminal and proceeded to find some lunch at one of the many food stops. Once done with lunch we found we had about 30 minutes to get to the gate.

Pretty much stay in bed all day and maybe watch some TV.

Yesterday I felt good enough to spend about an hour outside blowing leaves with the new backpack blower. At first I thought the engine noise would cause me a problem, but with ear covers it was no problem at all. In fact it was effortless to move around, just had to watch my step due to the dizziness. After about 5 minutes all seemed to settle in well and I did the whole back yard and garden. It wasn’t until after the blower came off and I walked upstairs that the dizziness came back with a vengeance. However, that went away just before dinner.

The dizziness seems to be starting to gravitate away from the whole head to just the right side. Just above the ear behind the temple is a spot that if I touch it, seems to make me dizzy. Could this be related to the plugged ear along with sinus pressure? My sinuses are clear and can breathe clearly with no problems. Right ear is still plugged, but noticed a few days ago that I am hearing more little snap, crackle and pops in there, especially if I blow my nose. Once in a while when I lay down, I can almost feel pressure change in the ear drum when I roll from one side to the other. The facial palsy is still with me, but I found this morning that I can now open my left eye, without the right opening. I could not do this a week ago. I can only hope this is progress.

This morning I awoke with a very bad headache, about a nine on the scale and the right side sinuses were killing me. But I got up anyway and took a shower hoping that would help some. Ate breakfast, lunch and dinner, as much as an effort it is to eat on one side of my mouth. I spent most of the day in bed doctoring my aching eyes and head. I was low on pain pills (Hydrocodone prescribed in Pittsburgh) and put off taking one of the last three left until Monday morning, just in case I had a real problem. Monday I have an appointment with my Neurologist where I’m hoping he will refill the pain pills for me. This night it looks as if the sinuses are clearing and I can feel the draining on the right side, have to keep swallowing to move it along. About 10:30 most of the pressure is gone but I broke down anyway and took a pain pill just in case. It takes awhile to kick in and I eventually fall to sleep.

Awake very warm, comfortable and no headache. It’s about 6:30am and I’m looking out the window to a sunny day thinking if I feel good enough after the shower I just might take my first drive today. Maybe go to the new Starbucks for a Java Chip Frappicino. Yes, I feel that good laying in bed right now. I check the gauze on my incision and find it leaked a little last night, but not as much as the night before. Finally get up at 9:00am and make my way to the bathroom, slowly. In the shower, things are beginning to spin very fast as I brush my teeth and I almost thought I was going to pass out. Sitting on the edge of the shower to get my breath, I’m thinking something is not quite right. It’s taking awhile for things to slow down so I can get back up and finish. Got dressed, still dizzy, and rest on the bed for about fifteen minutes. Finally, I get the urge to have some breakfast and start to feel better. Well, guess I won’t be taking that first drive today. Most of the day went pretty undisturbed and quiet. Tried not to sleep so I could get back into a regular sleep routine. Just before bed I’m thinking it would be nice to get some regular sleep without the pain pills, but they sure help me sleep better.

Had to break down and take the pain pill last night, due to it being 3:00am and could not get to sleep. I feel I’m waking more comfortable each morning, especially since I’m over most of the sinus pain. Decided to get breakfast first, before taking the shower. I have a 10:30am appointment with Dr. Tucker today, which I’m very much looking forward to.

The appointment went quite well. Dr. Tucker put many of my concerns to rest as to what is going on inside the old cranial. He was very surprised to hear that I could actually hear out of the right ear. Not very loudly, but I can hear. He seemed to think that once the ear clears that most of the healing should really start to take off. The biggest issue now is whether the nerve will heal itself and when. This will depend on the extent of any trauma the nerve received during surgery.

Thanksgiving Day and I’m looking forward to stuffing myself. The glue has started to flake off the incision, which is in some spots tender and others numb. The side of my head above the ear appears to be sensitive to any kind of pressure which indicates to me the sinus in the area has started to fill up again. All I can do is keep taking Allegra D and hope it doesn’t get any worse. This of course brings the low throbbing headaches and hard to move my head without getting some kind of pain. However, I’m happy to report the ear appears to be clearing up a bit. As things move around in there I can feel pressure and a sucking feeling against the drum. Oh and I am getting feeling back in that ear, which is quite nice.

Took two pain pills during the night because the upper sinus cavities have once again filled up causing the whole top of my head to be very sensitive to touch. It’s a bit slow going with the sinuses; however they are not causing me headaches, just extreme dizziness whenever I move my head quickly. Most all of the glue on the incision has fallen off and only the part covering the hole remains. I pat it down with tissue each morning as there is always a little blood or clear seepage that lingers after the shower. I’ve found that during this whole time I’ve needed to constantly keep a tissue on the incision when lying down. During my afternoon nap, I feel a sudden pressure movement, enough to wake me up, with a crackling right across the bridge of my nose. The left side pressure suddenly eases and I feel comforted that this might be a good start for the right side to do the same.

Slept most of the night with little or no interruption. Yes, I took a pain pill at one point, it helped the sleeping. Sinuses appear to be clear. In the shower, I had to sit down as things were spinning around like they did back on the 19^th. The incision is now completely clear of all glue. Falling into a regular routine now where the head is clear in the morning, by noon its beginning to fill up, take a nap till about 3:00pm, play soduko, eat dinner and go to bed.

Regular daily routine, except today my right head seems more sensitive to touch. By dinner time it was really bad and had to take a pain pill about 9:00pm to get to sleep. I can move my head around a little more each day as the muscles relax and stretch.

I slept most of the night. The head seems to have cleared out once again and I can feel stuff moving around my inner ear. After the shower found I have about 30% increase in right side hearing, then it goes back to being plugged up. Surely this is progress. The dizziness returns with the plugging. Ann calls me to see how I am doing. I tell her the glue is all gone off the incision now, I’m still quite dizzy with the inner ear plugged, and the facial palsy is still there. But, that I had an ear clearing for a brief moment this morning while in the shower. Right after talking with Ann, the Shoreline Clinic calls for scheduling my follow up MRI. I explain to the radiologist what the surgery was so she could get a better idea of what to look for during the MRI.

The past two days have been nothing but sleep and whirling head spins. The incision is healed enough now that hair is starting to grow over it. I woke somewhat steady headed, but took it easy sitting on the side of the bed. Then started my head and neck stretches, side to side, front to back, twisting slowly…..oh yeah the spins are still there. Performed some focus exercises by focusing on a point on the wall and moving my head side to side and up and down. I had to lie down for 5 minutes after that. This is the earliest I’ve been up in four weeks and its exactly four weeks since my MVD. Had a good breakfast with toast, cereal and orange juice, but also took a nausea pill just in case. The previous days I knew I was on the verge of being sick, but held it back until I took a pill yesterday before dinner. I know dinner was not going to stay down without some help.

Most of the past few days have been dealing with minor headaches and sinus drainage. I have a MRI today and a follow up with Dr. Tucker on Saturday. Most of the left side head pressure has gone. The right appears to be starting to dissipate. Any pain I have, which is really minor at this point, seems to be getting smaller in size around the incision area. However, I still have the dizziness, if the head shakes even a little it feels like the brain is wobbling around. I really hope this is being caused by the inner ear and that it clears soon. I also find if I move my head in certain directions that I get a feeling someone is pushing their thumb inside my head near the surgery point behind the ear.

I went to work for a couple hours today. As I was doing some paperwork in a store, I felt a muscle spasm on my right jaw bone. A signal? I only worked for a couple hours and was pretty wiped by the time I got home. Slept most of the afternoon. That night I felt a tingling sensation across my head and along the lower lip to the chin. I dreamt my whole face was returning to normal …….. in just one night.

What I dreamt that night was not far off in reality. When I woke I felt I could move about a quarter of my lower lip. Looking in the mirror, there is a definite change in the lower lip …….it appears to be straightening. I hope this will continue tonight.

Dad and I went to get a Christmas tree today and it was great to be strolling around the tree farm in search of that most perfect tree. We finally found it! As much as it wore me out, I carried it over to the lady who owns the tree farm.

Slept most of the afternoon again.

Nothing seemed to happen last night, as it did the previous night. Maybe it was a dream after all. But, when I checked it this morning, there is a sure sign that something is going on with the lower lip.

Head, side of face and forehead tingles last night. The ear is still giving me some problems, especially when I stand up and walk. Have to keep popping my ear with a finger to relieve pressure on the drum and stop some of the dizziness. This also clears the ear some and I can get about 30% in hearing back for a short while. Minor lip improvement, I can actually move the lower lip up against the upper lip now, though not all of it. Dr. Tucker’s office calls about a message I left them last Friday regarding scheduling an EMG. Dr. Tucker has started his Christmas vacation and plans to return in early January. I thought now would be great time to have an EMG done seeing there appears to be some 7^th nerve regeneration. I was also wishing he had been here so I could walk in and show him the lower lip improvement, more so that he could confirm that it wasn’t my imagination. It will have to wait till he returns.

Did a couple more hours in the office today. Very wiped by the afternoon and slept for 3 hours before dinner.