Getting ready:

1. Read related emails and diaries from recent surgeries, they are extremely helpful, preferably from the same Dr / hospital.  Recep Avci's emails gave me indispensable advice about diet pre and post-op and other very useful information.  The thread Teresa Smith started January 18^th was very helpful too.
2. Intuitively I felt and still believe so (nothing professional here) that you should get to the operating table in as good physical condition as possible.  I made sure to do my daily workout without giving up until 5 days before surgery.  Then took it easier but kept exercising.  (I swim a mile 5 times a week and run 3 miles twice a week, well almost every week).  Ate good and full again until 3 days before, when I started to be more on the soft food side – fruits, liquids etc.  Avoid things that may cause constipation (Thanks Recep).
3. Arrange for good escorts to join you if possible on MVD days.  My wife and best friend Michael were indispensable.
4. Things I took with me and were useful, and some which I wish I took with me (Thanks to replies from Teresa Smith):

a.       My own personal pillow,

b.       Eye cover (you know business class on airplanes, can get them at the store),

c.       3 sets of new pajamas,

d.      Notebook,

e.      Hand held mirror,

f.        iPod,

g.      camera,

h.      expected necessary medications,

i.        slippers,

j.        bathrobe,

k.      if you have a laptop – UPMC provides very good wireless coverage,

l.        battery chargers for whatever you take, cell phone, camera and laptop.

5. prepare a list of questions for Dr. Kassam and his staff.

Tel-Aviv – JFK – Pittsburgh flight. Settling in Pittsburgh, Residence Inn Marriott. Had great dinner at the Monterey Bay restaurant in Mount Washington, 15 minutes drive from the hotel. Fantastic and dramatic view over the city – highly recommended (paid about $200 for a good 3 people dinner, mostly seafood).

 

February 4, 2008:

We are in Pittsburgh a day earlier, Michael, my best friend (came from Mendham NJ), Liesbeth (my wife) and I. We took a very short, long walk by foot, through Pittsburgh throughout the day. Crossed bridges, saw how beautiful Pittsburgh is and bought a bathrobe. A 1-hour walk that turned into 6 hours with a visit to UPMC (with bumping into Dr. Kassam in the corridor on the 11th floor), CMU, closed museums (it is Monday), and Macy’s at the waterfront. In Pittsburgh they still smoke in restaurants!

 

February 5, 2008 - Final Pre-surgical testing:

Reported to Dr. Kassam's office with Lois, and the team. Had a short meeting with Dr. Kassam who reassured me that the usual experienced team is on and will be doing the operation. Dr. Kassam himself will do the actual decompression. Asked whether he thinks my one is Atypical or not – but it was not clear, until later, see below. Mostly he assured me not to worry.

Spend the whole day in the hospital going through tests, EMG, hearing, nerve conductivity, blood tests, and more. Interesting tests, conversations with Dr. Soso and others, that explained my HFS is Typical, and gave their version of what is HFS and why (not exactly what I read on our website!).

Dr. Soso says there are some 2000 nerves going in a bundle in Cranial Nerve#7, each going to a different muscle part in the face. The compressing blood vessels probably have been there for years, and over time with the blood pounding the myelin sheath (isolation material) of CN7 has been rubbed and destroyed. Now, I understood what he says, there are short-cuts between the different fibers that make up CN7 and these shortcuts cause the spasms: first, as with any electrical wiring, when they are touching there are noises generated in the touch point (remember these are not dead wires, there are signals running there all the time). Second, signals going one may now go to a different one, i.e., if the center wanted to make a little move in the lip it may now be translated and amplified into a signal in the eye or cheek. In the pre-op EMG tests he performed on me last week, he put signals (through small needles he poked into my face) in the chin and they caused eye twitching, and other such similar tests.

For various procedural reasons I have been hospitalized on the February 5th. Slept the night at UPMC on floor 8-D. They wanted to get me ready with an IV at midnight – managed to kick him out and convince him to let me sleep quietly. 4am the Doctor wakes me up again to put an IV in, I managed to defend my sleep and convince him again to leave me alone and that an IV will be put in while in the OR. He agreed and I got another 2 hours of sleep. Woke up around 6 AM or so, took a good shower, shaved myself as another Doctor came by to talk with me and mark the side of the HFS with a marker.

 

February 6, 2008 "MVD DAY":

7am the escort comes to pick me up for surgery. Here are Michael’s notes: Yuda called at 6:30am as we were about to leave for the hospital (Michael and Liesbeth were coming from the hotel). He said they were coming for him at 7am, so we left in a hurry. I dropped Liesbeth off and drove back to the parking garage, then followed her up to the 8th floor. Yuda had slept well, from 10pm to 4am, when he had to fend off an over-eager orderly insistent on putting an IV into his arm. He slept a bit more before they got him up. He already had the area behind his left ear marked with an X and the word “yes” and (I think) the initials of the person marking. (He said he had been shaving when the “person in charge of magic markers” came by.) While we waited a few minutes a loud noise accompanied by strong vibrations came from the hall…either the janitor cleaning the hall or a special service to make sure the patients were all awake.

Promptly at 7am an orderly came by with a bed, invited Yuda to get into it, insisted when Yuda tried to refuse, then wheeled him all of 50 feet to the nurses station. We waited there for several revolutions of the loud janitor-cum-alarm clock, and another patient with an x on his head joined us in his wheeled bed. The transporter (a pleasant young woman) arrived and checked Yuda’s armband ID against her paperwork. We wheeled down the hall to a special locked elevator she had to call to bring it to the floor, and we all rode down to the second floor. We wheeled around the corner and then said last pre-op good-byes before Yuda was wheeled into the operating area. The transporter came back out and took us down another floor to the Surgery Family Area, which was nicely set up with lots of comfortable chairs in a maze of little nooks and corners.

Meanwhile (my recollection now), in the ICU I met my anesthesiologist, Jenny Eklund, (? As far as I can recall her name, she is from Ohio). She was very young, but told she had already been on 700 such operations. She looked very focused, concentrated, super responsible and content which made it easy for me to relax (reminded me of my friend Shauli). Dr. Sara Shekar, the chief anesthesiologist, joined us also and she was very nice and professional. Jenny finally put the IV into my arm and said she is going to administer some relaxing stuff – from there on I remember nothing. Back to Michael’s notes, outside the OR: We checked in at a reception desk where we were identified as Family and Friend, then given a private patient number for Yuda so that we could track his progress on a wall screen. Each patient was listed by number, starting with blank white that changed from light green “in OR” to dark green “Surgery Started” to light red “In OPAC”. Liesbeth and I bet on the times the lights would change for Yuda (patient 1619). He turned light green at 8:15am, and stayed light green for several hours! He was still light green at 10:30am when the receptionist came by to tell us “They are closing, the surgeon is happy.” We continued to wait (still light green) until 12:30pm when the receptionist collected us and two other families and took us up a private elevator to a small hallway with two waiting rooms, to meet Dr. Kassam. One family waited in the hall and we went into the first room. The nurse emphasized that when Dr. Kassam was done speaking with us we should take the elevator back downstairs, and under no circumstances to follow the hallway in the wrong direction. (“Doctor Country”) After ten minutes Dr. Kassam came in accompanied by a tall thin lightly bearded gentleman he introduced as “my colleague”. He shook both our hands and said he was pleased. He said he had found two arteries impinging on Yuda’s facial nerve, and had “lifted” both. He said there was a 93% chance this fixed the problem, and if not, he would go in and do more. (He noted 93% is good odds.) Liesbeth asked about the spasms and hearing, and Kassam said the spasms are gone, and that the hearing was very bad, but got no worse during the surgery. We asked if Yuda was awake and if we could see him and Dr. Kassam said he was awake but we could not see him for an hour. He was clearly done with the conversation, shook our hands again and left. We followed the nurse’s and the doctor’s instructions, exiting as instructed and heading to the cafeteria. On the way, as I paused in the bathroom, Dr. Kassam walked by and told Liesbeth that he had gone to see Yuda in recovery and that he was fine. (It was apparent that Yuda was the first of three patients that morning, and Dr. Kassam had gone from one to the other before breaking away to meet with us).

We were famished and ate well (great sauerkraut), then tried to sneak to his ward…but they said instead of the 8th floor he was on the night before, he would probably be on the 5th floor, ward 5G. We went back to the Surgical Waiting area. The receptionist tried to get us a visit in the recovery room, saying Yuda had been there 2 hours. But the nurse there had a second patient, close to Yuda, who was just out of the operating room, so it was a bad time. She said to check with her in 45 minutes, to see if we could arrange a visit then or if Yuda was on a ward.

While waiting we sent the first email update to friends and family, and Liesbeth called their daughters, to reassure them and be reassured in turn.

When 45 minutes were up Liesbeth tried again, and was told no one was answering the phone in the recover room! We waited 15 more minutes and then went to the desk ready to do battle. Just as we got there the receptionist said “Oh, we’re looking for you. Yuda is on a ward. But first, because you waited so long, here are tokens good for $12 in the cafeteria.” Then she sent us up to the room on the 5th floor, a double in the Neurosurgery step down unit. Here Yuda had just arrived, and as we walked up, the transporter person was just hanging up her cell phone. She said “Are you Mike? He just told me to call you.” Yuda was very groggy but had still been able to give her my cell number. For the rest of the afternoon and evening Yuda went in and out of grogginess. He had a loud bout of retching, and frequently asked why he was suffering so. The doctor came by and explained that Dr. Kassam does not like to mask symptoms with a lot of pain medication. Also, the nurse said that intense nausea is a frequent side effect of this procedure. She said Yuda was doing very well, that many patients throw up all day after the operation. His blood pressure was high, 160/80, and the nurse came by and said they were going to give him a pill to bring it down. It dropped to 150/80 over the next hour or so before she brought the pill. Interestingly, and different than the ward on the 8th floor the night before, nobody here introduced themselves or volunteered very much information. Stephanie, the case manager we met the day before, was the exception. She showed up and re-introduced herself. She explained Yuda would be on this ward until tomorrow, when he would move to a private room on yet another floor. This step-down ward is for intensive monitoring. Yuda was connected to a catheter, a blood pressure cuff, an IV, several EKG connectors, and had a second IV tap in his left hand.

Periodically Yuda would ask for a sip of water or a little Jell-O. He had us get a towel for his lower back, and was good about exercising his legs as instructed to keep he blood circulating.

Yuda was groggy all Wednesday afternoon and as he roused from the anesthesia, more and more uncomfortable. (post op day was a nightmare and night was hell). He had trouble tolerating the catheter, which he kept describing as “inconvenient”. He also complained of extreme dizziness. Once he retched loudly and uncomfortably, but unlike many other patients, he never vomited. He asked repeatedly “Why am I suffering?” After the evening staff change, he kept calling the nurse: “Cindy! Cindy!” Liesbeth and I would try to find out what he wanted, but he would ignore us until Cindy showed up. Once, it was to ask if he could have the catheter taken out just for a minute, then replaced. Another time, he asked “I wonder, if it would be possible, to be tied into the bed?” We were all a bit stunned by the request, then he explained. “I keep sliding down.” (They had his head raised to keep the blood from going there.) As he became more communicative, he complained more and more of dizziness. We left him after 800pm, extremely uncomfortable, just after the nurse persuaded him to take some codeine “for the pain”, with everyone hoping he would be drowsier and less miserable.

The codeine helped me fall asleep for an hour or so. Asked Cindy for more, but she said this is too soon, only in another hour or two. As soon as I could get another codeine, I took it and slept again for perhaps 2 hours. By far the worse night I ever remember (and I had some). Then I was very anxiously waiting for Liesbeth and Michael to come back. Lots of issue with the blood pressure, that they kept waking me up to monitor.

 

February 7, 2008 - 1 Day Post-Op:

Thursday morning Yuda was more communicative and more comfortable with the catheter removed. He also had fewer monitors. They had removed the EKG but kept the blood pressure cuff (he had been having high readings) and pulse-ox monitor on his finger. He had been out of bed sitting up a few times before I arrived around 10:00am, but was still very dizzy. He would move and shift position, always resting his head to try to relieve the vertigo. His blood pressure continued to run high, and in addition to oral medication, at one time they gave him beta blockers to bring it down. He also noticed that he had lost all hearing in his left ear. This report lead to immediate concern, and we went off quickly to have a CT scan. Eventually we learned the scan showed no significant swelling or fluid build up. (Accompanied by a nice 4th year nursing student, and the ubiquitous transport team member.) Later in the day we went to a large Eye and Ear clinic, where a Japanese-American resident inspected Yuda’s ears and held a tuning fork to his forehead, and against the bone behind each ear. Then he went into a sound booth for a full hearing test. The results showed no hearing at all in his left ear, the side of the operation. Dr. Hirsch explained that the cause might be a permanent disruption of blood flow to the auditory nerve, or it might be temporary swelling. If the latter, he said treatment with steroids would help. He prescribed steroids for ten days, first by IV and later by mouth. These have side effects: high blood sugar, difficulty sleeping, increased appetite. (We’ve seen the high blood sugar, which is now monitored and was treated with two units of insulin.) During the day Yuda was obviously becoming more alert and active, going for some short walks in the hall and nibbling foods. He thought perhaps his dizziness was improving, but still spent long periods with his eyes shut. A physical therapist recommended he try watching some television, to help accustom himself to the vertigo and overcome it. We watched as long as we could stand it, but the prescription was too painful.

From time to time there are strange noises in the left ear – kind of clucks – perhaps a bee type cricket. Have no clue what that means.

 

 

February 8, 2008 - 2 Days Post-Op:

Friday was a completely different day. Yuda was much more mobile and seemed his real self. He still complained of dizziness, but it interfered much less with his activity. The therapist explained some exercises tracking with his eyes that he should do to accelerate the improvement. Most important to us, the significant improvement helped us believe that the hearing loss and dizziness were not fully linked, that even if the hearing loss is permanent, the disabling vertigo will disappear. We were visited during the day by two of Dr. Kassam’s residents, who were very informative and helpful, and who counseled us on follow up and discharge. Because Yuda’s blood pressure had been high (over 180) in the morning, they agreed it would be best if he stayed another day to ensure it was under control. We also got instructions for obtaining his records for follow-up in Israel. At some point, Yuda told me he had picked up the phone and thought it was broken. He was holding it to his left ear! There is still no sign of infection, and no pain from the incision or headache and, "NO SIGN OF SPASMS". And again the strange noises in the left ear – kind of clucks – perhaps a bee type cricket.

Early noontime Anurag, my true buddy and very good friend from California, came to stay with us for two days – this is really part of healing – being with friends and family as much as possible. Makes a huge difference and really helps.

 

February 9, 2008 - 3 Days Post-Op & Day of Discharge:

Since it's Saturday, it was a slow motion discharge. Paper work, get the prescriptions for the medications I need (Steroids, and three different ones for the stomach and the digestion system: Docusate SOD 100mg 1 x 2, Pepcid 1 x 2, Senna-gen 2 x 1 at bed time), remove the IV and escort to the hospital front door. Michael went ahead to the pharmacy while Anurag and Liesbeth finished the discharge procedure and we drove to the Residence Inn Marriott. Still very dizzy, no hearing whatsoever in the left ear. Since the forecast is for cold weather and a major snow storm between Pittsburgh and New Jersey for tomorrow we encouraged Michael to leave ahead of the storm and drive back to New Jersey today, which we're glad he did as it was freezing and heavy snow the next day.

 

 

February 10, 2008 - 4 Days Post-Op:

In the hotel I slept reasonably well. Would suggest you bring your own personal pillow from home with you!

Still dizzy, perhaps a slight improvement. Lots of tinnitus tone noises and high pitch signals in my ears, as if a carpenter and a dentist are sitting inside my head (I think both of them, both ears and both professions).

Breakfast. Took the medicine. Anurag has left for the airport and the heavy snowstorm has begun as his car disappeared.

Still very, very dizzy and zero hearing in the left ear.

 

February 11, 2008 - 5 Days Post-Op:

Monday in the hotel, so, Liesbeth and I went to collect the medical records from the hospital. Met Mary-Beth the very nice nurse from 8D who sent us to the Film Library. Up and down, over the bridge, there we got only the CT and chest pictures. So up and down and around to the transcripts and records and they gave a big envelop with lots of papers. The whole world is turning around for me, very dizzy.

Then, I felt a bit swollen above the incision and we said why not try the Kassam/Lois clinic and let somebody look at it since we are there. Sure enough we bumped into Dr. Kassam and had a good meeting with him.

He now says:

• It was very complicated, two arteries and a small vein, were pushing against the 7th nerve, quite deep in. He had to put in a lot of padding - 14 - 15 of them, does not remember the exact number.

• The dizziness they expect will go away, might take 6 weeks, but it is highly unlikely that it will not go away.

• The swelling is because they had to go through a mussel to get to the bone.

• He claimed that from the beginning of the operation they monitored and measured the response time and strength of signal on my hearing nerve - and he claims it was very weak all the time from the beginning, and the same at the end. Basically he said my nerve was very bad to start with.

• About doing headstands etc. In the coming 3 months big no, no. But after that I should be able to do anything; headstands, loops you name it. Like new as he says.

• Mostly have to wait and see for 6 weeks. When I asked if any thing can be done with the ear, he mentioned about putting something that transforms sounds from the left ear to the right ear in a few weeks time, more on that later.

Anyhow, we have an appointment with Dr. Hirsch tomorrow at 8:30am and sutures removal Wednesday at 8:30am.

 

February 12, 2008 - 6 Days Post-Op:

Still very dizzy, may be a little better but really hard to tell.

1. Did hearing test with Dr Hirsch: Left ear still no sign of hearing whatsoever.
2. Most likely cause is that some blood supply to the hearing nerve has been stopped and the nerve itself is dead, but need to wait 6 weeks or so to be sure. There are still a few days left on the steroids.
3. Looking through the ear - looks clean, no water etc. as far as can be seen from outside.
4. Q: If hearing and balance nerve are the same, why the balance should come back?

Hirsch: The hearing depends 100% on this nerve transmitting the signals from the ear to the brain. The balance is built with several inputs: eyes, legs, other ear etc. so it looks like it takes the system some weeks (6) to re-do, compensate and to actually reduce the inputs from the right balance nerve until it learns the new model I guess.

5. Q: Any other alternatives?
   Hirsch: two of them, both help to get sounds from the left side through to the right side. One - which we talked very little about actually put something that carry the sound to the right. Second, called BAHA, is a small screw with a microphone that they screw into the skull above the left ear. The bone in the skull carries the sound to the right ear. At UPMC they have a device that simulates it, which you can try and see how you like it. Anyhow, only to know and consider in 2-3 months. Still too early.


6. About the many tones, rings, hisses that I hear. These are electric signals in the nerve. Usually when there is hearing, even when quite, there is a signal carried over the hearing nerve and the other noise signals are cancelled and unheard.


7. Given the name of a Doctor in Ichilov, Tel-Aviv.


8. Said there is no point in again checking the nerve conductivity now (a test in which they play pulses in the ear and monitor the signals at the top of the brain).

 

February 13, 2008 - 1 Week Post-Op:

9:00 AM Sutures removed – don’t feel anything. Debbie and Lois, say the incision site looks good.

 

Clear to fly. 1:PM Taxi to the airport (over mount Washington last glance at Pittsburgh). Flight to JFK went okay. 8PM JFK. Walk, walk and walk. Had a great time with Nir Avrahami in the Lounge, and on to TLV.

 

February 14, 2008 - 8 Days Post-Op:

Smooth transatlantic flight. A little headache, but gone after a short time.

 

February 15, 2008 - 9 Days Post-Op:

At home. Walked 3 km !!. Still dizzy, tinnitus, rings and bells.

 

February 16, 2008 - 10 Days Post-Op:

Dizzier. Walk only 2 km with Noa. The carpenter and dentist are working non stop inside my head.

 

February 18, 2008 - 12 Days Post-Op:

Big setback. Feels like day 3 post-op. Probably because the steroids are tapering down for the last two days, and by day after tomorrow the dose is down to zero.

 

February 20, 2008 - 2 Week's Post-Op:

The slow recovery that restarted on February 18th is moving very slowly. From day to day I don’t feel the improvement, only after 4 days I realize that I feel better than 4 days ago. No hearing on the left side whatsoever. Lots of tinnitus, rings and bells.

 

February 27, 2008 - 3 Weeks Post-Op:

Very slow recovery, but improving. Still no hearing on the left side and lots of tinnitus. Dizziness and balance improving, about 75% on the way to complete balance and dizziness recovery.

 

March 11, 2008 - 5 Weeks Post-Op:

Very slow recovery, but recovering. Now you hardly feel the improvement after 4 days, only from week to week there is some improvement with the stability and dizziness. Still totally deaf on the hfs side and lots of tinnitus, rings and many other noises in both ears.

 

April 06, 2008 - 2 Months Post-Op:

Feels better, still some dizziness, some tinnitus no hearing on left side.

 

October 07, 2009 - 1 1/2 Years Post-Op:

I am still spasm free, but, totally deaf in the MVD side with TONS of tinnitus. Balance problems are nearly gone. Still an issue when have to stand on one leg - e.g., when getting dressed. Hearing loss somehow also effects the other ear, perhaps it still improves (the overall hearing, not the dead ear which will never improve) very little. Considered BAHA but decided against it for now. Recommendation: Check the rate of complications, not only the rate of Spasm Free success when selecting the surgeon !! Let him go in twice or more, but let him be very careful and save your hearing, facial nerves etc.

---

Permission granted the HFSA to post MVD Diary on website.
Yuda Pinkhof, April 7, 2008 (Updated 10/25/09)

 

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