MVD Diary - Homer Wesolowski
Wednesday, March 31, 1999 - Pre-admissions work:
Pre-admissions work took most of the day. Had pre-surgery hearing test, filled out insurance forms, gave medical history, had some blood work done, had an EKG, had a chest X-ray.
Thursday, April, 8, 1999 - Date of Arrival:
We drove to Albany arriving at 8:30 PM and checked into the Nelson House. Went to bed about 10:30 PM, fell to sleep around 1:00 AM on April 9,1999.We stayed in Albany through Monday, April 19. While we were out of town, our kids (Dan - 17; Steve - 14) were watched part of the time by Barb's sister Terri & her husband Ralph and the rest of the time by Barb's sister Colleen & her father, John.
We stayed for two nights at the Nelson House, a retirement home in which AMC reserves 8 rooms for out-of-town AMC patients and families, at a rate cheaper than a hotel. The rest of the time, we stayed at Residence Inn in Latham, which has suites with kitchen, living room, and bedroom. Would have been great if I was released earlier from hospital. As it was, Barb spent most of her awake time at the hospital. Still, for the 3 nights we spent in Albany after I was out of the hospital, it was great to have a mini-apartment where I was able to go off and sleep.
Friday, April 9, 1999 - "MVD-Day":
5:30 am: Woke, took shower with soap! Required of all surgical patients6:20 am: Arrived at hospital, went to same day surgical check-in, took vitals (pulse, blood pressure), changed to surgical outfit
Homer:
7:00 am: Put me on gurney, took my glasses (without glasses I see only about 3 inches clearly), and wheeled me to waiting room outside operating rooms. There were about 5 other people all waiting. All went before me. Anesthesiologist (Dr. Chun) came, put in Artery Line (A-Line) and IV line. Artery line used for monitoring, IV used for giving me stuff.
7:30 ish: Dr. Lovely stopped by, everything was go, I was wheeled into the operating room. Climbed over onto the table, but had to move way down because of tallness. I think they put my head where they usually put your feet. There was lots of equipment, it looked like everything was draped, but I couldn't see very well. There were about 4-5 people running around - I couldn't tell what they were doing. The head neurosurgical resident (Dr. Buslow?) introduced himself - he would be assisting, he and Dr. Chun were discussing how I was to be positioned. Seems like only about 5 minutes - don't remember any warning - and I was out.
Barb:
7:00 am: I went to surgical waiting room - there's two, a bigger one and a smaller more secluded one. I went to the larger one, where I could see the information booth. At 8:30, this was manned by hospital personnel. They check on surgeries every two hours and relay information to families.
8:55 am: (8:30 status) Still positioning his head, on schedule. (Head position is one of the key aspects of the surgery). I imagine shaving and disinfecting come after positioning, but don't know for sure.
10:55 am: (10:30 status) Incision was at 9:00, all going as planned.
1:55 pm: (1:30 status) Surgery done, hasn't the doctor been out to see you? They checked again: almost done, the doctor will be out to see you soon.
2:10 ish: Dr. Lovely came out (in scrubs) - Said it was really tough; explained what he had found, drew a picture of problem and what he did. Talked about hearing - had to move the 8th nerve, monitoring showed it was tolerated almost to the end. BSERs disappeared for a few minutes then came back (unusual!), then went again - probably lost hearing. Said he had done the best he could, thought the spasms were fixed, felt bad about hearing (Homer was only the 2nd patient in about 500 whose hearing was affected). Homer wasn't awake yet, he usually waits until patient is awake before talking to family, but it had been a long time, and he thought I would be worried. I went to get something to eat, brought it back - good thing, because...
2:50 ish: Dr. Lovely came out, Homer is awake, in recovery, talked to him, looked like spasm is gone, but hearing is affected.
3:55 pm: (3:30 status) Homer is okay, vitals okay, looking okay, asked about me. (Homer has no recollection about time between 3:00 and 5:00, except vaguely remembers Dr. Lovely talking to him and asking about me.)
5:00 pm: They let me into the recovery room for about 10 minutes. Homer looked very pale but alert. He had an oxygen mask, 2 lines (the A-line, and the IV), a catheter, and blow-up socks (these would inflate every few seconds to aid circulation). There was a big white dressing over his incision - about 4 x 7 inches, behind his right ear (they cut a little off the dressing to curve around his ear) from just above his ear level down to the nape of his neck. It was like a very stiff piece of felt. Normally he'd be in the recovery room for a only couple hours, but there was no room for him in intensive care. Homer was surprised that it was 5:00 already.
8:00 pm: They let me back in to the recovery room. I could stay until they took Homer to Intensive Care - still no room. Homer looked a lot better - not pale like before. They had removed his oxygen mask, and replaced it with an oxygen tube (a plastic tube which runs under your nose and supplies extra oxygen as you breathe). I gave him back his glasses. While he was in recovery, there was a nurse there at all times, constantly monitoring his vital signs. He was getting fluids and morphine through the IV.
10:15 pm: Left recovery room for ICU, room 320. I left for hotel at 11:15.
Homer:
Evening / Night:
As I woke up and became aware, I felt pressure behind my ear - not painful, just pressure. The incision area felt numb. I felt like my right ear was "full" or blocked. I noticed I couldn't hear out of my ear, and vaguely remembered Dr. Lovely telling me he thought my hearing was gone. I couldn't tell if I had spasms - after a while I decided that I didn't.
I noticed three types of noises in my right ear (the side operated on):
- Someone breathing - I have no idea what this was or why I perceived it.
It persisted off and on for about a week.It sounded exactly like someone breathing, but
it wasn't me, it wasn't at the same time, or same rate that I breathe. It sounded like it
was near my incision.It couldn't have been the sound of liquid sloshing around my head,
seemed to regular for that, and I wasn't moving my head, and even if my breathing was moving
my head, it didn't correspond to my breathing.
- Faint echoes - When I would hear a loud sound, such as the beeping when the nurse call
button is pressed, I would hear it as normal with my good ear. About 2 seconds later, I would
hear it clearly but fainter with my bad ear. About 2 seconds after that, I would hear the
sound again, even more faintly but also badly distorted. This interested me because it seemed
to me that somehow, the sound was getting through to my brain from my bad ear. I don't
understand what could cause such a long delay - certainly not fluid. I can conceive that
my 8th nerve was messed up and it was propagating the signal ever so slowly, but I don't know
if there is a physiological basis for that possibility. This persisted for 24-48 hours.
- Tinnitis - But Tinnitis gone spastic. Really loud ringing and whistling and squealing,
like music played backwards. Again, no explanation. Could possibly be false sounds caused by
aggravation of the 8th nerve. This persisted 24-48 hours. It came back during my ride from the
hospital to the hotel.
My left ear seemed especially sensitive - I liken it to when your ear pops and things suddenly seem louder, and you can hear yourself swallow, only about 3-4 times more intense. My thought was that somehow during the surgery, there had been enough pressure in my mouth to blow out my Eustachian tube. This persisted for 24 hours, but decreased over time.
I had a lot of facial weakness on the right side, too. On Monday (04/12) Dr. Lovely explained that there could be a couple of reasons for this, the most likely being now that he had restored full nerve signal to the muscles, they were being affected by the botox treatments I had. I remember thinking at the time, it couldn't possibly be that, but later I realized that the weakness did seem to be exactly the same as when the botox seemed to be working.
I had a band of numbness across the middle of my tongue - I thought that it could either be that part of the tongue that is controlled by the 7th or 8th nerve and was affected, or it was from the tube that had been in my mouth. It persisted for about a week.
A mild burning numbness in the 2nd, 3rd, and 4th fingers of my right hand. This decreased over the first week to just the last sections of my 3rd and 4th fingers. Possibly caused by some nerve pinched in my neck during surgery.
I didn't sleep much at all the first night, and when I did it was only briefly and fitfully, and I had all kinds of bizarre nightmares. Fortunately I don't remember any of them. In retrospect, I wasn't completely coherent, although at the time I felt awake and alert. It was a timeless night - I was aware that time was passing, because I asked the nurse the time every time I saw him. It was a long night, but I didn't feel impatient.
THE FIRST WEEK:
Saturday, April 10, 1999, The Day After:
Morning:Barb arrived about 10:15 (visiting hours start at 10:30). Preparing to move me from the ICU to the Neuro Observation Unit. When I went, they took everything, the bed, the night stand/drawers with my stuff in it, and the oxygen.
Around 11:15, was moved to room D558 (Neuro Observation Unit). It's a room with a long desk for two nurses, and 6 beds fanned out around it separated from each other with curtains, and one side open to the nurses. They can draw the curtain across the front for privacy. It's just what it says - you there when you need to be under constant observation. Normally you're there for about 24 hours, but I ended up being there the whole time, first because they figured I was going to be discharged the next day and didn't need the space, and later because they needed to watch the spinal drain. While there, they take your vitals every four hours. One lady they did every hour, because for a while she seemed to be worsening rapidly. (She recovered and went home before me.) There's a bathroom at one end of the room.
Nurse Dottie came by and took over: We have a set list of things we're going to do over the next few days, and when you've done them all, you go home. Over the next hour or so, she got rid of the oxygen, the A-line, the catheter, and the blow-up socks (replaced with surgical socks and booties).
Sat up, first time my head was off the pillow. A few waves of dizziness, but not too bad.
I start getting medications:
- The hospital's version of Lipitor, a prescription I'm on (just started a month ago) for
high cholesterol and triglycerides. I got one of these every day while there, instead of
taking my own medicine.
- A painkiller (Loratab?), since I'm no longer getting morphine. I take one every time
they're offered, not because I'm feeling pain, but so that I won't. After another 24 hours I
stopped taking these.
- Three times a day I get something to prevent too much gas buildup in my stomach and
twice a day I get a stool softener for the duration of my stay.
- Because of the facial weakness, they're worried my eye doesn't close all the way.
It may dry out and become damaged, so every two hours I got eye drops. Before bed I get
ointment. I've been wearing contacts for 30 years, and I've learned that I am sensitive to
the preservatives they put in most eye solutions. After 3 or 4 days, they drops and the
ointments begin to sting, so we decide my eye is closing, and stop the drops, but keep
the nightly ointment.
Afternoon:
Lunch - liquid diet, no desire to eat, drank some juice. When I had surgery two years ago (I was out only about 2 hours), at lunchtime, I was hungry and ate the whole lunch. Then, I drank lots of liquids thinking it would help the urination process along the requirement to go home). Big mistake. It's a matter of time. The food and liquid just sat there, and I felt bloated and nauseous for several hours. This time, I wasn't going to rush things. I felt pressure to eat from the nurses, but I never ate unless I felt like it, and that worked out much better.
After lunch, I got out of bed! Dottie on one side, Barb on the other, holding onto the IV stand and Barb, Dottie holding on to me. A little dizziness, but it went away within 10 steps or so, walked the rest of the way across the room (maybe 30 feet), turned around and went back. By the end of the walk, I felt fairly confident on my feet. Dottie kept telling me to breathe deeply to help eliminate the anesthesia.
Supper - liquid diet, still no appetite. I succumbed to pressure and drank some juice (good) and some broth (good) and a couple of milk shake things (so-so). Everything just sat in my stomach - digestion wasn't up to speed yet.
As the day went on, I felt quite a bit stronger. I got up twice more, venturing into the hallways. It felt good to be up and walking around. I feel like the act of being up and about helps trigger the rest of the body into doing whatever it's supposed to. I could just feel tenseness draining away, fluids starting to circulate, muscles starting to respond, and so on.
Started going to the rest room on my own, escorted to the door of course. Not much happening at first, but as the day went on, things became more normal. At some point, I found that leaning forward helped, but when I did that my nose got runny, just the right side - didn't think too much about it - they had just put drops in my eye to keep it from drying out. I thought the drops had drained through my tear ducts into my nose. This happened every time I went to the bathroom, but I still didn't think anything of it.
Evening:
By Saturday night, I was feeling pretty good. I had been up many times - at this point I was walking on my own, just me and my IV stand. Barb and the nurse would hover, but they didn't have to hold me. I didn't have much appetite, but I wasn't worried about it.
Night:
I slept very little - maybe two hours max. This became the trend for me - I just could not sleep in the hospital. When I did sleep, it seemed like I had constant bizarre dreams - not nightmares like the first night, but not restful peaceful dreams, either. By the way, normally, I rarely dream (or at least rarely remember dreams). These dreams persisted all while I was in the hospital. When I wasn't sleeping, I mostly just lay still (just like I do when I can't sleep at home). I got up 5-6 times just to wander around. By this time I had acquired hospital gown bottoms to go with the hospital gown top, so I could wander the halls with a sense of dignity.
Sunday, April 11, 1999, Two Days Post-op:
Morning:I must have finally dozed off for a few minutes, because the residents woke me doing their rounds around 6:30. I got up, ate breakfast - back to normal food, but still no appetite. I just drank the fruit juice and ate the fruit. Took one bite of the gruel (ugh), took one bite of the muffin (too dry). Nurses seemed concerned about my not eating very well, but I knew I wasn't ready for more than that.
Dottie, the nurse, took the last IV out! Now I was totally unencumbered. I was able to take a sponge bath and shave.
Barb came around 10:00.
Dottie changed my dressing and declared everything looked good. Turns out the dressing was the only thing covering the incision - every two days, they just peeled the old one off and slapped on a new one, after trimming it a bit to mold around my ear. I was really impressed by the dressing - the glue stuck well enough to last a few days, but when they went to peel it off, it didn't hurt at all, even when my hair was starting to grow.
Things are going along just great. I had had a little trouble urinating, again this morning, but now things were normal again.
Dottie came over with the good news. Looks like I'll be getting out the next day! She gave us some dressings and told Barb how to change them.
She started to go over the things to watch for. Got to the one about fluid dripping from your ears or nose. Well, yeah, I've had some dripping from my nose, when I lean forward - two or three drops at a time; thought it was just the eye drops. She said to let her know if it happens again.
Five minutes later, three doctors descended on me. They had me lean forward and were able to collect 1/4 test tube in a few moments. They sent it to the lab, but they were fairly positive it was a cerebrospinal fluid leak.
CSF is fluid in which the brain and spinal cord are suspended. Normally your body produces about 150 cc per day, keeping the fluid at a positive pressure, so that fluid is always seeping out, and nothing is ever seeping in. For stuff to seep in, bringing viruses or bacteria, is very bad.
While performing the MVD for HFS, the surgeon cuts into the sac containing the CSF (I think it's the dura) and drains away part of the CSF, so that the cerebellum can be retracted out of the way. Closing up, the surgeon stitches the dura (it has the texture of vinyl) and tries to seal it against the cranium. It's difficult, and in about 2 percent of the cases there's a leak.
So, what now? - complete bed rest at 30-45 degrees for 12 hours; if that doesn't work, they put in a spinal drain for 72 hours; if that doesn't work, they go back in as far as the dura and try to reseal it.
Afternoon:
I have to admit, this really threw me for a loop. I guess I realized the dangers associated with the leak, and that I'd be in the hospital quite a bit longer, and by this time I was pretty tired, and things seemed awfully loud and confusing (all the noise coming from one side, with bizarre sounds coming from the other side). I lost what little appetite I had (ate no lunch), climbed into bed and lay there.
For about an hour I was annoyed and depressed about the whole situation. I must have looked it, because Dottie came by and said - these things happen, just think of this a 3 days of annoyance out of a whole lifetime. Which was about the right thing to say.
My brother came to visit that afternoon - he had taken the train from New York City, then a taxi to the hospital. By that time, I was in good spirits again, so we had a nice visit.
Barb had gotten a couple of apples from the cafeteria, and she cored them and sliced them using a plastic knife. Even though I had no appetite for most of the food, the apple slices tasted good to me. I ended up eating one or two apples a day that way. She also kept me supplied with fruit juice (orange, apple, cranberry and tomato).
Evening:
Dr. Lovely called in, and told the residents to do the spinal drain, rather than waiting the 12 hours.
To give you a spinal drain, they give you a shot of novocaine (which feels like a prick followed by a burning sensation - both uncomfortable, rather than painful), then push through the flesh and the membrane holding spinal cord. They insert a very thin catheter and tape it securely to your back. It goes in your back close to the spine, in between two of your vertebra. Then it's like a reverse IV. The drain runs from you back to a collection bag; the rate of the flow depends on the height of the bag. The bag collects the fluid into a compartment which measures how much there is, then it can be emptied into the larger bag. The spinal drain is supposed to remove the positive pressure of the CSF system, so that the liquid isn't "squirting" out, so that the leak has time to heal. For me, they were trying to get 28 cc per hour.
That's what is supposed to happen. They told me what they were going to do, but not that it wasn't going to hurt. So, I was expecting it to hurt, and kept flinching. Plus, the doctor had never seen anyone who had scar tissue like I do on my back. He tried to avoid it. For whatever reason, the first attempt didn't work. Nothing came out of the catheter. They fetched the chief resident for the second attempt - he used a little more novocaine and went right through the scar tissue and started the drain successfully.
But, just so you know - it's not a painful procedure.
The doctors left, without seeming to tell the nurse anything, although I found out they had written instructions. I was to stay in bed at a 15-30 degree angle. The collection bag was positioned at waist height.
I was dripping at a rate of about a drip every two seconds. Barb noticed that it had collected 10 cc in 10 minutes. She got the nurse to check it, who checked with the doctors, and about a scary half-hour later adjusted it upward - at about shoulder height.
She also took two tries, and got assistance on the second try to insert another IV. They needed to give me antibiotics to prevent infection while I was on the spinal drain. I ended up getting a mild CSF headache Sunday evening.
Night:
Very little sleep; what sleep I had contained bizarre dreams. I kept watching the drain, and if it was going too fast, I'd slide down in the bed, if it wasn't going fast enough, I'd move up in the bed. Barb didn't sleep well either - she said she had nightmares about dripping things.
Monday, April 12, 1999 - Three Days Post-op:
On Monday, the nurse got me permission to sit up to eat and to get up to use the rest room. While I was sitting or up, they would clamp off the spinal drain.Dr. Lovely stopped by. He had been out of town with his son's Cub Scout pack over the weekend, but had checked in. He repeated everything he had told Barb on Friday, said he had replayed it in his mind over and over, but couldn't think how he could have done anything differently. He checked my hearing (a crude test - he rubs his fingers near my good ear and whispers a number in my bad ear), I couldn't hear anything. He also explained that the facial weakness was probably due to residual botox. He didn't seem concerned about the tongue numbness or the hand numbness - he thought they would go away over time.
Barb arrived around 10:00, complaining because she had slept in, and by time she got to breakfast, the bagels she liked were all gone. This was the only time through the whole ordeal she complained about anything! She left around 10:00 pm.
Later that morning, I got a CSF headache, and the nurse gave me a couple of Loratabs. This didn't help my headache, but lowered my blood pressure drastically and I began to feel lightheaded and nauseous. Barb remembered the same thing had happened when I had surgery in 1997, so from then on I didn't use the Loratabs.
Monday through Wednesday alternated between times when things were okay and when times were horrible, depending on whether I had a CSF headache or not.
For some reason, once or twice a day, I would get the headache, which seems to last a few hours and then go away. To me, these things were debilitating - it hurt to move, it hurt to talk, I even felt like my stomach would stop digesting and it would have to start up again once the headache went away.
I tried Loratab (a painkillers) once, but that only had negative effects.
I couldn't seem to get a handle on when it would happen. I drank plenty of fluids all the time I was in the hospital, so I don't think that had anything to do with it.
When I didn't have the headache, which was most of the time, I was great.
Tuesday, April 13, 1999, Four Days Post-Op:
A relatively good day. For the first time, I felt like eating, I still didn't force myself to eat, but I was eating almost everything, except the meat. I'd only eat a bite or two of that. Barb came about 7:00 am and left around 10:00 pm.
Wednesday, April 14, 1999, Five Days Post-Op:
Not-so-good day. I think the lack of sleep was catching up to me, and I was definitely starting to feel bruised from lying on my one side most of the time. I basically switched between lying on my back and lying on my left side (incision up). I found I could lie on my right side, but after a half-hour, gas would build up somewhere in my abdomen and get caught in some corner and would become painful. Had mild CSF headaches most of the day.My brother from NYC stopped by again (surprise) - he has Wednesdays off. It was nice to see him, but I really didn't feel like visiting. Later, Barb's sister and father stopped by on their way from their house to our house (Albany is the midpoint of the trip) - they were on their way to take over watching our kids.
By Wednesday evening, I was feeling okay, again.
And then, just to make our day, in the evening, I told Barb I thought I might be hearing some sounds in my right ear! We did a couple of tests: she clicked a pen near my ear - I heard it; she loudly whispered some stuff - I made out most of it. Sounds were badly muffled, in retrospect I'd say partly due to the nerve, but partly due to the fluid buildup in and around the ear.
Barb came about 7:30 am, and left early, around 8:00 pm - she was tired.
Thursday, April 15, 1999, Six Days Post-Op:
About 6:30, the residents showed up, and removed the spinal drain, covering the spot with surgical bandages. When they took it out, a bunch of fluid came out and spilled on the bed. They told me to lie flat on the bed until after lunch, the pressure of the bed against my spine would help keep it from leaking. They left.At 7:00, the nurse came to check me and seemed surprised that the drain was gone. Breakfast showed up at 7:30 and I raised the bed and started eating.
Barb came about 7:30. Shortly after, but purely coincidental, I got a CSF headache.
The nurse checked on me at 8:30 - I told her the doctors had told me to lie flat against the bed until after lunch.
The headache just kept getting worse and worse. At 10:00, I told the nurse that the headache was really bad, and she offered me a Loratab.
At 10:30, I told her it hadn't helped and asked if there was some way she could at least change the bed so it wouldn't be wet.
She went to get the other nurse to help, and the other nurse said I could lie on my back or on my side but my head had to be low. They changed the bed and suggested I drink caffeine and lots of liquids. At least I could lie on my side.
Lunch came and went, but I couldn't eat.
I began to feel better around 1:00, but I felt leaking from my back. The nurse checked it - it was - and called a doctor, who came and put more surgical bandages.
At 3:00, it was still leaking, they called a doctor who said he'd be by later.
Around 5:30, the doctor checked with Dr. Lovely, and put two stitches where the drain was. He did it with no anesthesia, but it wasn't too bad - a few pricks - much like getting botox shots. By this time, the evening shift nurse, Debra, was there, and she watched him putting in the stitches. She said she watches everything the doctors do - it makes them more careful, and she knows what they've done. (I later suggested this as something all nurses should do on my comments form.)
I was supposed to lie flat until 7:00, then every 20-minutes, I could raise the head of the bed 10-15 degrees. 2-3 hours later, I should be able to get up. If all went well, I'd be getting out of the hospital the next day.
The CSF headache had diminished so that I was feeling sharp pains in only one spot, near the incision on the right side, rather than throughout my head. As I lay on my left side, this would not go away. As a consequence, I only raised the bed a little - I was afraid to raise it more.
Finally, around 9:00 Barb said I should ignore these localized pains and continue sitting up anyway. (The next day she told me she thought if I didn't get out of bed Thursday evening, I'd probably have to stay another day.)
I tried this, but the pains got worse. Finally, in desperation, I turned on my right side (incision down), and the pains almost immediately went away!
By 11:30, I was up and out of bed, no leaks, and no pains. Barb had stuck it out to the bitter end, making sure I was out of bed before she left. She was very tired, and I was a little worried about her driving to the hotel (about a 20- minute drive).
I didn't sleep at all that night, until about 5:30, but at least I was able to get up and roam the halls again.
Friday, April 16, 1999, Seven Days Post-Op:
Because of the leaking, Dr. Lovely had ordered two more antibiotic treatments, and I received the last of these at around 5:00.The residents showed up around 6:30, breakfast around 7:30. After breakfast, I asked to have the IV taken out, and the nurse did so. It had been in since Sunday and was a little sore. Then I took a sponge bath and shaved, and in many ways just enjoyed my freedom from the bed!
I was always careful to tell the nurses when I was going out for a stroll, and told them I wouldn't leave the area (they had one patient who had decided to wander and was gone for hours at a time, until they told her not to), but once, I was sitting in a chair in a sort of waiting area looking out the window long enough that they came looking for me.
Around 10:00, Barb came, looking much better and a little more relaxed.
Around 11:00, one of the residents came and removed my stitches.
Dr. Lovely came by around 11:30. By this time I had been up for hours, and I was getting those sharp pains in my head near the incision.
These pains, which I had experienced many times in my life associated with flus, strep throat, ear infections, and bad colds, I recognized as being a sign I was overdoing things a bit. I would get these several times over the next few days, and I would immediately go lie down.
But they weren't too bad, and we were talking about getting out of the hospital. Dr. Lovely okayed my release, once we agreed to stay in the area until Monday. I told him about my hearing. He did a quick whisper test, which I flunked (he is quite breathy, and the sounds were masked by wind sounds), but I got parts right, such as a leading 'T' sound. He concluded I was hearing something, but it wasn't very effective. He said it might continue to improve.
So, we left the hospital about 12:00. Got to the hotel about 12:30. The trip really aggravated the tinnitus - it became a shrieking in my ear, continuing to be a varying whistling sound. I think the sound was due to faulty signals from the nerve to the brain and all the jostling from the driving aggravated the nerve further.
We got to the hotel, and I lay down for some much needed and eagerly anticipated sleep. Barb headed to the store to lay in supplies for the next couple days. I couldn't sleep! It took a while, but I eventually fell asleep, and slept soundly for about an hour. Had a bizarre dream. After the nap, the tinnitus was no longer shrieking, but it was louder than it had been in the hospital. It took until Sunday before it settled down.
Got up, had supper around 5:00 (heated up prepared lasagna, salad, cider - delicious). Read a book for a few hours, went to bed around 9:00. The bizarre dreams continued, and I woke up every one or two hours, but at least I was able to fall back asleep.
Every night for the next three weeks, I continued to put the ointment in my eye at night. It was supposed to keep my eye from drying. I didn't think I needed it, because my eye was closing (but it didn't take much for it to open), and because my eye was tearing, but I wanted to be safe. I eventually stopped using the ointment when I started wearing my contact lenses again.
First week summary:
Surgery 04/09/99, CSF fluid leak, spinal drain inserted and removed, released from hospital 04/16/99.THE SECOND WEEK:
Saturday, April 17, 1999, Eight Days Post-Op:
Woke up about 7:00, had breakfast, took a shower. Felt normal again! Had a visiting nurse come by (our insurance company arranged this); she said everything was okay. She asked me how I felt about all this. I thought that was an interesting question. I answered that I felt good - I thought the outcome was good, in that the spasms were gone, and satisfactory despite the hearing problem. And even that, unexpectedly, it looked like my hearing was going to improve to some extent.Early in the afternoon, Barb hooked up her computer, we got on the web and checked out the bulletin board. No news from the three having MVD's on April 15, and I added an entry to let everyone know how I was doing. It took about a half-hour, and my neck was tired from my head being tilted slightly downward.
Around 2:30, I began to get the sharp pains in my head near the incision area, so I went to lie down for a while.
Around 3:00, my brother and sister stopped in. They had driven up from Virginia, just to make sure I really was okay. We had a nice visit, during which we ordered pizza for supper.
During supper I noticed I was having a harder time trying to close my eye and it was difficult to bite off the pizza. I couldn't hold the right side of my mouth open, and it kept slipping in between my teeth. To avoid biting myself, I had to resort to cutting the pizza into bite-sized pieces.
They left around 6:00 - they were going to NYC to spend the night with that brother. I read for a while, but felt tired and was experiencing the pains again, so I went to bed around 9:00.
I fell asleep, but woke up around 11:00, and couldn't get back to sleep. I mostly lay quietly, but around 3:00, I got up and read. Around 5:00 I fell back to sleep.
Sunday, April 18, 1999, Nine Days Post-Op:
Slept in, had breakfast. A different visiting nurse came by, and changed the dressing on my back. She said everything looked okay.Spent the day reading, watching a little TV, wandering around the room, took a nap (didn't want to nap too much, because I wanted to sleep that night). Ate lunch and supper. Continued to drink lots of fluids.
No head pains at all. I began to think that the pains might be due to a lack of cerebrospinal fluid. Maybe it was taking time to fully restore the fluid level.
I was still having more trouble closing my eye, and I noticed that my face was quite a bit weaker than before - almost no movement. I decided that it wasn't just tiredness, it was Bells Palsy symptoms setting in. What a great thing to have known in advance this was a possibility, from reading about others' experiences! I also noticed a feeling that my right cheek was bruised. This lasted a week and a half.
I also noticed that some foods didn't taste right. It seemed mostly the sweet tastes were gone, and all tastes were a little duller. For example, milk chocolate tastes like semi-sweet chocolate, and some Ben & Jerry's ice cream, which I was really looking forward to, was virtually tasteless. I wish I had noticed whether this was present since the surgery or whether it came on with the Bells Palsy, but I didn't really have any sweets in the hospital. I also noticed I could only taste an apple on the left side of my tongue.
On the good news side, Barb and I continued to test my hearing. She would whisper and I would see if I could understand. It did seem to be a little better. We knew there was a lot of other things, which might be affecting my hearing, other than nerve damage.
I noticed that if I scratched my head, it sounded about 50% as loud on the right side as the left. I figured that required transmission from the inner ear to the brain, only, and not through the entire ear the way Barb's whispers did. This gave me hope that eventually I'd be hearing at about a 50% level.
Barb went out and got some Tylenol PM. I took two tablets before bed, and slept the whole night, not waking up at all!
Monday, April 19, 1999, Ten Days Post-Op:
Barb and I go into Albany for a checkup with Dr. Lovely (a 20-minute drive), then head for home (just over a 3-hour trip). We've been dreading this, after the problem I had just driving to the hotel on Friday. We decided I'd ride in the back seat, with it tilted back, with the incision side down on a pillow.Dr. Lovely did a quick neurological survey, said I seemed to be doing okay, explained the Bells Palsy (see next paragraph), and removed the sutures from my back where the spinal drain had been. I'll see him on May 18 for a follow-up and also see Dr. Cacace for the final hearing test and evaluation.
They're not positive what causes Bells Palsy, but many authorities think it might be caused by a virus attacking the facial nerve. In the case of MVD, they think the virus is already present, but dormant. When the surgeon stirs things up, so to speak, the virus becomes active. Seven to ten days later, the virus is in full force, and the symptoms appear. As the body fends off the virus, the symptoms go away. This takes 4 weeks to 6 months - the earlier, the more complete the recovery. Dr. Lovely may just have been talking about the Bells Palsy experienced with MVD, and not Bells Palsy in general.
The trip home was uneventful. Barb drove, and it's not a bad trip, fairly scenic, and usually the traffic moves right along. I reclined the seat - it reclines to about 35-40 degrees, and kept my incision and bad ear against a pillow. I slept for about an hour. No headache, and no worsening of the tinnitus. This was a great relief.
Shortly after going to bed, the spinal drain started leaking again, kind of sporadically, probably depending on my position. At 11:30, after several calls between me and my primary care physician and them and Dr. Lovely, I was sent to the Emergency Room. I had my son drive me, since Barb was tired and was planning on working the next day. My kids were off school that week. At about 1:30, after the neurosurgeon on call talked to Dr. Lovely, he put a couple more stitches in the spinal drain site. He deadened the area with Novocain first. Then they gave me a CT scan, to rule out anything causing increased pressure, which would have caused the spinal drain to leak, but that showed normal. We got home about 2:15.
Interestingly, the intern handling me at the ER seemed to know everything HFS and MVD. I told him I was surprised that he knew so much. Turns out he has performed the surgery many times in Taiwan - he's now working to get his USA accreditation.
Slept fine, after taking two Tylenol PM.
Tuesday, April 20, 1999, Eleven Days Post-Op:
Tuesday, I woke up feeling a little achy, and took some Tylenol. I had spasms under in my right lower eyelid for most of the day. I had had a few spasms the day before, but these were present much of the day. They seemed different than HFS spasms. These fluttered up and down, and I remember HFS spasms moving my lower eyelid sideways. I didn't worry about them. They were gone the next day and back most of Thursday. Then they were gone for a couple of weeks.I went for walks - 10 minutes on Tuesday, 20 on Wednesday, 30 on Thursday and Friday. We had gorgeous weather - sunny, with temperature in the high 50's to low 60's. I wore a knitted ski hat to cover my ear and incision. Thursday, I tripped, fell, caught myself with my hands, tucked, and rolled. Saw stars. I seemed okay, but watched for warning signs the rest of the day.
Most of the time I just sat, or read, or napped (some days up to 4 hours). Slept okay at night, using Tylenol PM.
Still drinking plenty of fluids and eating lots of fruit (thanks to a couple of fruit baskets).
Wednesday, April 20, Twelve Days Post-Op:
Wednesday was Barb's and my 20-year anniversary. Can't say enough good things about her support over the last couple of weeks. Her family, too, came up and took turns watching our kids for us.
Thursday, April 21 - Friday, April 22,1999, Days 13-14 Post-Op:
On Thursday and Friday, my incision began to feel a little sore, not quite as numb as it had been. The area also was a little less swollen an not quite so tight. I never developed a scab on my incision - it just healed cleanly.I logged on every day to get my sunshine, usually I didn't stay on long, though. On Thursday, I wrote another note to the Circle of Friends giving an update.
Second week summary:
Returned home 04/19/99, CSF fluid leak at spinal drain site stitched at ER 04/19/99.THE THIRD WEEK:
Saturday - Friday, April 24 - 30, 1999:
During the third week, I began to feel normal again. As far as general activities, I was still napping 2-3 extra hours a day, and didn't try to push things. I went for brisk walks up to 45-minutes, gardened up to an hour, worked on the computer up to 4 hours, and read the rest of the time. I also did normal household chores, such as cooking, cleaning, and laundry.On Wednesday, I called my manager at work and said I'd be ready to start work half days for a couple of weeks on Monday. She said to see my local doctor first and check with Medical. By the time I saw my local doctor and contacted Medical, who said I needed a form signed by Dr. Lovely, got the form to him and back, another two weeks had gone by. I ended up working half days for two days, then going right into full time.
Tuesday and Thursday I had normal garden-variety headaches, which were chased away with Tylenol.
The swelling near my incision decreased considerably, and the tightness of the tissue decreased. I was able to massage that area.
The fullness and blockage feeling in my ear began to decrease, too, although a lot remains. I experienced a lot of ear popping noises. The absorption of the fluid is taking a lot longer than I realized.
My hearing continued to improve. My impression was that it was due to more sound making it through my ear (less blockage) and not due to a healed 8th nerve. With the increased sounds, I get increased distortion. Loud sounds and pure tones seem to penetrate the most and have the most distortion. For example, the music accompanying most TV shows really bothered me.
Third week summary:
Occasional lower eyelid spasms, but not HFS spasms.THE FOURTH WEEK:
Saturday - Friday, May 01 - 07, 1999:
During the fourth week, I definitely felt normal again. I held back, not because I felt unable to physically do things, but just to be safe. At this point, the last thing I wanted was any complications. The only exceptions was I still felt like napping an extra 1-2 hours a day.On Tuesday, I saw my primary care doctor, who removed the stitches from my drain site, and told me everything looked fine. She also said things should be pretty much healed inside my head and I should be able to resume normal activities, but not to push it too long or too strenuously.
This was all I needed to know. I had actually already resumed all normal activities, anyway, it was the more vigorous activities I was wondering about. At any rate, I ran once and rode my bike a few times, both at about 2/3 normal effort for about 1/2 the normal time.
The fullness and blockage feeling in my ear was still decreasing, and I still experienced a lot of ear popping noises, but it's still not normal yet.
My hearing continued to improve. In a quiet environment talking to someone, it seems normal - the distortion is minimal. I noticed that my ability to judge where sounds are coming from is improving. However, internal sounds (such as my talking or chewing) drown out external sounds. Still annoying to listen to the TV - I usually block my ear.
Toward the end of the week, my Bells Palsy started to decrease - I had just the slightest movement in my upper lip.
Fourth week summary:
Total facial weakness (Bells Palsy) continues, but may be starting to decrease.THE FIFTH WEEK:
Saturday - Friday, May 08 - 14, 1999:
Life is good. This is almost like vacation! Dr. Lovely sent me the form saying I could go back to work for four hours a day, but I didn't get until Thursday. I worked fours hours on Friday. I usually am active 3-4 hours a day doing normal home work inside and out, one day I spent a couple hours helping with a project in my son's class.I started wearing my contacts again - what a relief. My glasses are quite thick and heavy, even though they're made from the lightweight material. I don't seem to have any problems, but while riding my bike the first time wearing them, the breeze blew it right out of my eye. >From then on, I wore a pair of swim goggles while biking.
While biking and running, I exercise at about 3/4 normal effort for about 3/4 normal duration.
I think my Bells Palsy has gone. I regained movement in my upper lip, then cheek, and then forehead. It's a little hard to tell, because my face is so weak anyway. My taste hasn't significantly improved - that's a little disappointing.
My hearing is no longer improving - it seems to have stabilized at about 50% of my other ear, by my estimation. I still feel slight fullness and blockage, though, sometimes almost gone, and sometimes quite noticeable. The distortion is still there, but it doesn't seem quite as annoying at last week - I can tolerate loud noises better.
I got a haircut - I asked the barber to blend in the back a little, so my incision area wouldn't be so noticeable. I don't think he could help himself - I ended up with quite a short haircut. But the effect is that people notice how short my hair is, and not the hair length difference or the incision.
Fifth week summary:
Bells Palsy is gone, but still have facial weakness, just like right after surgery.THE SIXTH WEEK:
Saturday - Friday, May 15 - 21, 1999:
This week, really nothing changed from last week, which is good, considering I was back to a normal schedule. I was working full time, as well as the usual kid, house, and yard work.On Tuesday, I had my follow-up visit with Dr. Lovely and had hearing and BSER tests with Dr. Cacace.
Dr. Lovely thinks my facial weakness should improve gradually (over months, from this point) - he still thinks it is residual botox. He explained that no one has definitely discovered the cause of the type of Bells Palsy we experience (comes on a week after surgery and goes away 4 weeks later), but a lot of scientists suspect that a virus dormant in/near the nerve is stirred up by the activity and affects the nerve until the body brings it under control again.
My hearing test showed my left unaffected ear and my right impaired ear to be at the high end and low end of the normal range, respectively. The test included varying loudness at varying pitches, followed by seeing if I could understand all the various sounds in American English.
The BSER test showed my bad ear was not at all on a par with the good ear. This test gives a whole lot of clicks and measures the response - it is looking for a signature of signals coming as a result of each click. I didn't fully understand the explanation. It takes lots of clicks, because the signals it is looking for are very hard to detect, and only by getting lots of them is the computer able to filter them out from the noise. The doctor thought the results explained the static and distortion I hear with that ear. Most of the signal from a stimulus arrives at my brain at the proper time, but some of it is arrives later and some of it doesn't arrive at all. Basically, the BSER test evaluates the condition of the hearing pathways.
BSER stands for brain stem evoked response. I've also seen it referred to as ABR (auditory brain stem response), BAEP (brain stem auditory evoked potential), and BAER (brain stem auditory evoked response). These might also be differing testing techniques.
I asked why my balance didn't seem to be affected, the way my hearing was, since it's the same nerve (or as some people have reported due to the Bells Palsy). Dr. Cacace said that the hearing and balance parts of the nerve are in different places, if you were to look at a cross section of the nerve bundle - the hearing strands may have been affected and the balance strands may not have been. He also said balance is done by the brain with inputs from three systems (visual, vestibular=ear, and whole body sensory). Different people use the inputs with different priorities. I know I am heavily influenced by my eyes - if I close my eyes, I lose my balance easier. He suggested closing my eyes and see if my balance seems affected. Getting in a pool of water would minimize the input from the rest of the body. Possibly, with my eyes closed in a pool of water, I would experience balance problems.
On Thursday, I tried running for 3 miles at my normal pace, and found I had to back off a little. This shows I've I lost some capability. It is most likely that this is a result of the period of inactivity, rather than the surgery. All in all, my general recovery seems complete.
Sixth week summary:
Despite increased activity (7 hours of driving one day, and working full time the rest), facial weakness, taste degradation, finger numbness, hearing, fullness of ear are all unchanged from last week.THREE MONTH UPDATE:
My MVD was three months ago, today. Since my last post, my remaining post-op conditions have improved, but only slightly.
I still have the fullness feeling in my ear, some days it seems better than others. I don't have quite as much distortion of loud noises, but my hearing remains somewhat degraded. Neither of these bothers me - quality of life is not diminished.
The facial weakness and the diminished taste are annoying, though. The lop-sidedness isn't too bad - what bothers me most is my eye drooping. My vision is quite bad (about a -12 diopter), and I wear contact lenses. When I do anything active, such as mowing the lawn or riding a bike, the breeze tends to dry my eye and lens. I've had one contact blow out, and almost lost it a couple more times.
As far as taste goes, fruits and vegetables still taste fine on the unaffected side of my mouth, which is essential, because I enjoy them more than any other foods. However, cookies, most candy, and ice cream seem to lack taste entirely - only chocolate has any taste, and it tastes semi-sweet. I don't mind the cookies and candy so much, but this is Ben & Jerry's country, and it's been hot, and I use to really enjoy ice cream!
The perplexing numbness of the tips of my fingers remains, but usually doesn't annoy me.
These are not complaints - just trying to describe my condition. I am better off today than before the MVD, and the post-op conditions that have completely disappeared outnumber the few slight problems that remain. At this point, I still expect to see continual (though very slow) improvement.
SIX MONTH UPDATE:
My MVD was six months ago. Since my last post, my remaining post-op conditions are still slowly improving. According to Dr. Lovely, I can expect ever diminishing improvement for up to about a year.
I no longer feel fullness in my ear, but there is some tightness near the incision. I have been trying to stretch the area, and that seems to help. I still have some distortion of loud noises, but most of the time my hearing seems normal.
My taste has improved - I can now enjoy ice cream and cookies, but they still don't taste quite as good as I remember.
The facial weakness has improved to the point where most people wouldn't notice it, except that my eyes blink at different rates. I can't pucker with the affected side, and the lower eyelid droops somewhat. I lost another contact, but my eyes are too bad to wear disposable lenses. I wouldn't feel so bad losing a disposable lens.
In the last two months, my eye has started to tear one or two drops over the course of a meal - very minor. I thought it might be due to signal leakage within my seventh nerve, which to me seemed to a bad indication. Dr. Lovely explained the 7th nerve may have been slightly damaged when he was doing his manipulation, and some of the nerve's tearing signal and taste signal cells have grown back cross-wired. My eye is getting part of the signal that should be going to my tongue. It's actually a good sign that my 7th nerve is recovering.
I had a six month checkup with Dr. Lovely. He seemed disappointed with the less-than- complete success, but is glad I'm satisfied with the results. If I lived locally, he would have me come back after a year, but three hours is too far to go for a 15-minute check up. He wants me to e-mail him how I'm doing then.
WHAT WAS THAT?? (SEVEN MONTHS):
On the evening of November 8 (one day shy of seven months), I experienced a rush of loud noises in my right ear (the HFS side). At the same time, I felt a movement and wetness inside my head, back where the surgery was. There wasn't actual movement or wetness; that's just how it felt. There was no pain involved, and all this lasted about a second.
Since that moment, I have been experiencing mild dizziness, especially while moving my head. By mild, I mean strong enough to be unpleasant, but not strong enough to affect balance or movement. Over the course of the next week, it has improved to where it distracting, but does not cause discomfort.
Tinnitis flared up for a day or two, and then that subsided. My hearing in that ear might be slightly more distorted than it had been, but I can't be certain of that. For the most part, I don't notice any degradation, except under noisy conditions, just as before.
Earlier in the day (hours before this happened), I had some spasms that were reminiscent of HFS in the lower cheek, near the chin. I had ten or so episodes lasting up to 5 seconds over a twenty minute period. This happened again the day after. These two incidents were the only occurrences of spasms I have had.
After a few minutes, I realized it wasn't an emergency situation. I gave myself an hour, then a day, then a week to see what would develop. Then I sent a fax to Dr. Lovely, describing what had happened. He called back the same day; here's a summary of his response:
The spasms point to the 7th nerve. The dizziness, loud sounds, Tinnitis, and affected hearing point to the 8th nerve. These two nerves are next to each other at one spot, and possibly something affected that bundle.
The most likely cause is scarring. As scar tissue forms, it can adhere to blood vessels and nerves, or anything else for that matter. Later, scar tissue shrinks, and it can move things around. He has done quite a few second and third MVDs and has seen where scar tissue had pulled blood vessels into the nerves or distorted the nerves. He tries to anticipate the scarring and use enough strategically placed felt to avoid this type of problem.
People have reported many strange experiences, and there's usually no cause for alarm. There's not really much that can be done, short of trying to see something in an MRI or going in to look. Neither of these measures are warranted, considering the mildness of the symptoms.
He remains concerned about the partial face weakness and partial hearing loss. It means these nerves have been compromised to some extent.
He asked me to keep him informed and to contact him if I had any other questions or concerns.
A few days after I talked to Dr. Lovely, I started having spasms again. These spasms are quite strong, but they're limited to one particular muscle on the side of my nose. That particular spot seems tender to me, though, so something else might be happening.
My feelings about this are mixed. I'm not exactly upset or worried, but it does have my attention. If I knew it wasn't ever going to get worse, it would be easy to live with these inconveniences. There's uncertainty at this point -- is it going to get better, or is it going to get worse?
I'm back to a waiting game, to see how this will all turn out, just when I had been getting to the point where I didn't think about it all the time.
NINE MONTH UPDATE:
I still have some facial weakness. When I scrunch my face, that side doesn't scrunch as much, and that eye doesn't close as tightly. It may be improving ever so slowly still, but it's hard to tell. I'm okay with this -- I have to be careful about getting dirt in my eye and losing my contact lens, but it's very little impact.
My hearing is the same as it was. Under normal circumstances, I don't notice any problem, except I can't place sounds as well as I used to. In loud environments, I have difficulty hearing, because the loud sounds are distorted. When using a telephone, I can't make out all the words. I'm okay with this, too. It has even less impact on me.
For the first seven months, I had no spasms. Then I started getting spasms just in the one muscle on the side of my nose. This activity has declined somewhat, but now I'm getting spasms in my lower eyelid. These are quite frequent and are just how I started 10 years ago. This hasn't bothered me as much as I expected. It's because this level of spasm just doesn't bother me, and I still think it's possible it will get better again.
So, all in all, I have no complaints with my physical condition (regarding HFS anyway), and I'm in good spirits.
ONE YEAR UPDATE:
My MVD was one year ago today. Things really haven't changed from when I reported three months ago. The facial weakness, tearing, and partial hearing loss and distortion are about the same, possibly marginally improved.
I don't know whether the weakness has decreased, or whether my muscles have improved to compensate. The difference in the rate that my eyes blink has decreased - the difference is about half of what it was six months ago. Back then, I needed to use my cheek and brow muscles to close my right eye independently of my left; now I can close my right eye alone without squinting. I can puff my cheeks out more than I could, and some days I can even whistle. I can't quite blow up a balloon -- I need to support the one side of my mouth to do that.
My right eye stills tears up when I chew, not much, just a few drops over the course of a meal, and really isn't much of a bother. It would be much more of a problem if my eye didn't tear.
I think after that episode in November, my hearing was slightly worse, but it has returned to what it was. In most situations, I don't notice any deficiency at all. I am less bothered by loud sounds. The best comparison I can make is by listening to the telephone -- with my right ear, the sound seems about 2/3 as loud and the speech has static, but I can understand what is being said.
I'm having two types of spasms: mild ones in my lower eyelid and stronger ones in the muscle on the side of my nose. The mild ones, reminiscent of HFS) have decreased over the last three months.
The strong ones, (unlike HFS), still only affect the one muscle, have increased in frequency. Unlike my spasms before the MVD, which were constant, these come in episodes. It can be hours between spasm episodes. When they start, they last for half an hour or so before calming down. They are definitely related to other facial activities, such as chewing and talking. I can always make them start by scrunching my face.
I still am quite a bit better off than I was before the MVD, and I'm not ready to consider another one yet.
I sent a one year update fax to Dr. Lovely, and then we talked by phone. We had discussed much of my condition previously, so he concentrated on my spasms. While it is impossible to diagnose remotely, he suspects the facial nerve was damaged during surgery. A demyelinated nerve is very fragile, and the manipulation of MVD can damage it. As I understand it, the facial weakness, the tearing, and the spasm could all be related. The weakness is caused by loss of signal, and the other two are caused by cross-wiring as the nerve regenerated. If so, they should not get worse, and may get better. On the other hand, there is no surgical solution. In my case, I'd be satisfied if it didn't get worse.
THE CONTINUING SAGA:
When / if any of these conditions change, I'll add to this report. Otherwise, I will probably add something at my two year anniversary, and that will be that.
For details of my HFS experience leading up to my MVD see my Personal HFS History.
Permission granted the HFSA to post MVD Diary on website.
Homer Wesolowski, September 28, 2001