I was looking forward to meeting Barbara to get my first, in person, look at a person with spasms, other than myself. Like many of us, Barbara's spasms appeared intermittently and in varying degrees of intensity. I saw extended periods of no spasms at all, to periods of minor flutters to one occasion of complete eye closure for a short period. Barbara and Marcia repeatedly commented that they couldn't see my spasms at all. Not surprisingly since I've always said my spasms have been mild in nature. However, no matter how minor they show, when they do occur I feel them and they make me feel tired and uncomfortable.
What can I say about our HFSA official Pittsburgh greeter Marcia? She is extremely personable, effervescent and an absolute ball to be with. We are so fortunate to have her represent the HFSA to our Pittsburgh visitors. In addition to having an opportunity to get questions answered, face to face, by someone who has gone through an MVD, many laughs during a stressful pre-op period is equally important. Thanks Marcia for filling both needs.
Although we were all having a blast, Barbara was scheduled for her pre-op testing early in the morning so we called it an evening at 8:30 PM.
I would strongly recommend members visiting Pittsburgh to take Marcia up on her kind offer to meet and talk. It's very relaxing and comforting, pre-op, to meet a local, former sufferer that is now spasm free. In Barbara's case, she had an opportunity to discuss the surgery and potential post-op conditions with two people that had gone through it. Sharing a lot of laughs pre-op is extremely relaxing. Thanks Marcia!
Tuesday, January 21, 2003 - Pre-surgery Testing (not done locally) and pre-op consultation:
Up early and on the way to Allegheny General Hospital, Outpatient Department, (the 6 mile trip that took 10 minutes yesterday afternoon, with traffic this morning was closer to 30 minutes) for my 9:45 AM appointment for my EMG-NCS. They do electrical monitoring, looking for abnormal neural conduction and crosstalk, termed "lateral spread".Dr. George A. Small, Director of Allegheny General Hospital’s EMG Laboratory, performed the EMG. The test revealed no synkinesias, no after discharge, but did show the EMG discharge and lateral spread consistent with a diagnosis of HFS. With the exception of very minor electrical shocks, the tests are virtually painless.
During the testing, Dr. Small and I discussed the HFSA and he was interested in hearing about our member's experiences with Botox. Since I was interested in electrical testing used to diagnose HFS I asked Dr. Small if he would use my tape recorder and dictate some information, in layman's terms, about the testing. Following the completion of the tests, he was kind enough to do so. Immediately following the EMG, I get the notes indicated above and take them to Suite 302 in the East Wing for my MVD Consultation with Dr. Jannetta. Upon arrival I meet Melissa Ann Kochanowicz (Administrative Coordinator) and give her my MRA and MRI films. Next I'm brought into an examination room where Rick Kortyna, the teams Physicians Assistant, walks me through a background of my current and prior health, current medications, known allergies, etc. We follow with the standard follow the flashlight up and down and side to side, the obligatory tongue depressor in mouth and repeating ahhh. Next we do the close eye, open eye, blink, close your eye tight, open the eye, and repeat all of the above tests and my lungs are then listened to. I'm asked about the spasms and I indicate that they are mild and are just affecting the eye area. Following the tests, Rick indicates that it's affecting not only the eye, but the cheek also. Kathy Evan, Nurse Coordinator, came in to say hi and I get an opportunity to get a picture of Rick, Kathy and Melissa for sharing with the group.
Next Dr. Jannetta comes in, takes a look at my face, reviews the note from Dr. Small regarding the EMG/NCS, gets an update from Rick and reviews the surgical notes from MVD #1 on October 18, 2000.
During the visit I posed the following questions to Dr. Jannetta and received the following answers:
Q: What generally is the reason for a recurrence after a successful
1 st MVD?
A: A true reoccurrence is usually because another blood vessel, artery or vein has come onto the facial nerve, or sometimes, a vein has grown back and is on the nerve. (In my case, during the 1 st MVD I had two arteries padded off and a vein burnt off). A suedo recurrence is one where the patient was never better because something was missed and didn't get fixed the first time, but that's not your problem. Q: What will be done differently this time to prevent the need for a 3 rd MVD?
A: If a vein has grown back we would try to pad it off rather than take it. Q: What are the increased risks involved in a 2 nd MVD?
A: A theoretical increased risk to hearing and facial weakness is what we worry about. But what we have found is that the 2 nd operation is usually easier on the patient than the 1 st. Q: Prior to my 1 st MVD in October 2000, you indicated that during surgery a portion of bone, behind the ear, is removed to allow access to the cranial nerve. Titanium Mesh is later screwed in as a replacement for the bone, before the wound is closed. You indicated that the addition of the Titanium Mesh has been found to significantly reduce headaches post-op. Is this still the same procedure?
A: Yes, but we'll take the old mesh out and put new mesh in. Q: Following the 1 st MVD I developed the "ear fullness" feeling and lost some hearing. It seems like the "bass" sound is gone and the "ear fullness" has continued to today. Is there anything that can be checked or done during this MVD to possibly rectify this?
A: I can't intelligently answer that until I get in and see what's happening. Q: Does Dr. Casey do the surgery with you observing or do you both operate?
A: We both do the surgery but for this one I'll be doing the major work. Q: Will my follow up and ok to leave Pittsburgh be on Tuesday morning?
A: Yes, you could be released from the hospital as soon as Saturday, but you'll need to remain in Pittsburgh until your post surgery appointment on the following Tuesday. Q: Can a VHS tape be made of the surgery for me to use for the HFSA?
A: Generally they aren't that good, I'll talk to you about it after we've finished the surgery. Q: What do I need to do to get copies of any and all reports from this MVD?
A: Just ask for them. Dr. Jannetta then asks if I'm sure I want to do this again and I say yes, if you think it can be fixed. With that, we're set for first thing Thursday morning. So after taking his picture, we're finished and he's off . It was good to finally meet Kathy Evan (who has faithfully answered my questions over the years, both personal and HFSA related) Melissa Ann Kochanowicz (who coordinated all pre-op testing and record gathering) and Dr. Ken Casey. Dr. Casey has also been totally responsive and helpful to the HFSA. After meeting him in person I also discover he is extremely outgoing and personable, as are all of the members of the team that I have been fortunate enough to meet. Dr. Casey's picture is the last one taken.
A: A true reoccurrence is usually because another blood vessel, artery or vein has come onto the facial nerve, or sometimes, a vein has grown back and is on the nerve. (In my case, during the 1 st MVD I had two arteries padded off and a vein burnt off). A suedo recurrence is one where the patient was never better because something was missed and didn't get fixed the first time, but that's not your problem. Q: What will be done differently this time to prevent the need for a 3 rd MVD?
A: If a vein has grown back we would try to pad it off rather than take it. Q: What are the increased risks involved in a 2 nd MVD?
A: A theoretical increased risk to hearing and facial weakness is what we worry about. But what we have found is that the 2 nd operation is usually easier on the patient than the 1 st. Q: Prior to my 1 st MVD in October 2000, you indicated that during surgery a portion of bone, behind the ear, is removed to allow access to the cranial nerve. Titanium Mesh is later screwed in as a replacement for the bone, before the wound is closed. You indicated that the addition of the Titanium Mesh has been found to significantly reduce headaches post-op. Is this still the same procedure?
A: Yes, but we'll take the old mesh out and put new mesh in. Q: Following the 1 st MVD I developed the "ear fullness" feeling and lost some hearing. It seems like the "bass" sound is gone and the "ear fullness" has continued to today. Is there anything that can be checked or done during this MVD to possibly rectify this?
A: I can't intelligently answer that until I get in and see what's happening. Q: Does Dr. Casey do the surgery with you observing or do you both operate?
A: We both do the surgery but for this one I'll be doing the major work. Q: Will my follow up and ok to leave Pittsburgh be on Tuesday morning?
A: Yes, you could be released from the hospital as soon as Saturday, but you'll need to remain in Pittsburgh until your post surgery appointment on the following Tuesday. Q: Can a VHS tape be made of the surgery for me to use for the HFSA?
A: Generally they aren't that good, I'll talk to you about it after we've finished the surgery. Q: What do I need to do to get copies of any and all reports from this MVD?
A: Just ask for them. Dr. Jannetta then asks if I'm sure I want to do this again and I say yes, if you think it can be fixed. With that, we're set for first thing Thursday morning. So after taking his picture, we're finished and he's off . It was good to finally meet Kathy Evan (who has faithfully answered my questions over the years, both personal and HFSA related) Melissa Ann Kochanowicz (who coordinated all pre-op testing and record gathering) and Dr. Ken Casey. Dr. Casey has also been totally responsive and helpful to the HFSA. After meeting him in person I also discover he is extremely outgoing and personable, as are all of the members of the team that I have been fortunate enough to meet. Dr. Casey's picture is the last one taken.
Finally I get to see the jovial interaction between Kathy, Ken, Melissa and Rick. In addition to working well together they also seem to really enjoy each others company.
I'm reminded to call the Ambulatory Care Center at 412-359-8294, between 3:00 – 5:00 PM for pre surgery instruction and my arrival time for Thursday and I'm finished for the day.
I leave the hospital and return to the Hawthorn Suites to type up Dr. Small's information, answer e-mails, update my diary and relax.
Wednesday, January 22, 2003 - "Final Pre-op Testing":
Again up early and off to Hearing and Balance Center located in Suite 402, in the East Wing of the hospital, for my hearing tests at 9:00 AM, with registration scheduled for 8:45 AM. Traffic was a little lighter this morning but it's safer to allow 30 minutes for the trip to AGH. All of the return trips so far have been about a 10 minute trip. The hearing tests are an ABR and Audiogram. The first test is the Audiogram, which involves sitting in a small soundproof room with headphones on. Initially you are asked to repeat a series of words that are whispered in your ear at various volume levels. Next they play various sounds in your ear and you signal that you hear each sound by raising your hand each time you hear something. This test takes about fifteen minutes. Next we go to another room for the ABR (Auditory Brainstem Response) test. These results provide the baseline hearing data for the hearing monitoring that will be done during surgery. First they place about four electrodes on your forehead and cheek and place tubes in both ears. You are then asked to lie down, relax, and close your eyes. They then begin to play sounds in your ears, alternating from ear to ear. These sounds are similar to low and loud clicking, bees buzzing and a loud jackhammer. The test was simple and also took about fifteen minutes.
I'm fortunate that I had my pre-op hearing tests for MVD #1 also done at Pittsburgh Ear, so they have the records for Pre-MVD #1 to compare these new test results to.
I have been instructed to call the Ambulatory Care Center at 412-359-8294, between 3:00 – 5:00 PM to get pre-surgery instructions and my arrival time for Thursday. At 3:10 PM, I place the call. I’m asked, by a nurse, about the medications I take and she instructs me which ones I can take before surgery, which turned out to be all of them. I'm reminded no food or liquids after midnight and then told to report at 5:15 AM to the Registration desk located in the 1 st floor lobby of the Snyder Pavilion. When the nurse told me about the 5:15 AM arrival time, I immediately thought ok, that means I need to get up at about 4:00 AM and I break out laughing. She asked what I'm laughing at and when I tell her, she said "at least you only have to do it once, I do it every day". I'm instructed to park in the James Street Garage and to bring my parking receipt with me for validation.
Next it's time to head out for the airport to pick up my friend Joan who's flying in from Sarasota, FL to be with me for the surgery. Quite a gesture since she won't return home until January 28, and then leaves February 1 for a one month trip to Australia and New Zealand.
After the airport, we stop at the Olive Garden Italian Restaurant at 971 Greentree Road, Pittsburgh, PA 15220 (Phone: 412-922-7200
Fax: 412-922-7417), about 5 minutes from the Hawthorn Suites, for dinner and then it's to the Hawthorne for some TV before lights out. Since it's brain surgery tomorrow lets forget the "lights out" and change it to "time to go to sleep for the night".
Thursday, January 23, 2003 - "MVD-Day":
Well forget the sleep, I was awake most of the night. Note to self - Next time, don't have Fettuccini Alfredo, with a lot of garlic, and garlic bread the night before surgery. Since I slept very little, perhaps subconsciously I must have either been thinking about the surgery or worrying about oversleeping. We arise at 4:00 AM, head for the hospital at 4:45 AM, arriving at 4:50 AM. I wear sweats and slippers to make things simple. Upon arriving at the hospital we park in the James Street Garage and report at 4:50 AM to the Registration desk located in the 1 st floor lobby of the Snyder Pavilion. Since we had arrived early, we had to wait downstairs until 5:15 AM to proceed to the 11th floor and stop at the Admission’s Desk, in the hallway just outside the elevator. After signing in, we proceed to the waiting room until about 6:00 AM, when I'm taken to a hospital room to remove my clothes and put on a hospital gown with straps in the rear, and slippers with little speed bumps on the bottom. Next, a nurse comes in with tight white full leg hose (T.E.D. Anti-Embolism Stockings, to reduce the threat of blood clots from forming in the legs) for me to put on. The nurse takes my temperature, pulse and blood pressure and asks for a copy of my Advanced Directive (Living Will). Next she takes a blood sample which will be tested prior to surgery to assure they know my blood type in the event of the need for a transfusion. Small world, when the nurse sees my name she asks, "Aren't you the one who laughed yesterday when I gave you the time to report"? Guilty as charged. At about 6:00 AM, Rick Kortyna, Dr. Jannetta’s Physicians Assistant, stops by to see if I have any questions, to ask when I have last eaten, and to tell me that shortly I will be taken to the OR holding area to meet with the Anesthesiologist and where I will stay until my surgery, which is scheduled for 7:00 AM. Before leaving, Rick asks which side the surgery will be on, and after I tell him left, he puts a mark behind the left ear, with a felt pen, to assure the surgery occurs on the correct side. At 6:40 AM, a nurse comes in to get me on a gurney for the trip to the Operating Room. We enter the elevator for the ride down to the OR. Once there I’m introduced to the nurse anesthetist, who asks me a long list of questions about my medical history, medications I’m taking, allergies, checks my pulse, blood pressure and temperature and explains how the anesthesia will work. Next I’m introduced to the Anesthesiologist. After assuring that I have no allergies, we start the morphine. Next, Dr. Casey stops by and asks if I have any questions? I answer no, and I’m wheeled into the OR, and shortly I'm dreaming of a spasm free life with Pina Colodas and the beach in sunny Sarasota. All right, no dreams. Following surgery, Dr. Jannetta went to the waiting room to update Joan. He indicated that my hearing was ok and that I was waking up in the Recovery Room. He had found a big artery way down low and then a smaller one coming from it and moved them and the testing came back to normal. He looked on the underside of the nerve and found nothing else. He checked it out with an electrical probe and found nothing else on the nerve and the physiology became abnormal then started to fade off again which was a good sign and that I was looking good and should be ok. He then drew a diagram for Joan of what he had found and explained as he drew. Here we have the left side of the brain and the nerves coming out. This is the facial nerve and these nerves go into canals in the bone. There was a big and smaller artery on the nerve. All of the old material from the first surgery was still there. He moved the two arteries and inserted shredded felt, made the opening in the bone a little bigger and he believed everything would be ok. At some point in time I began to wake up in Recovery with some soreness around the incision, which I of course expected from past experience. The sad part was that when I did the squeezing eye shut test, I could still feel the spasms. So although I awoke after MVD #1 spasm free immediately, this time it will be a wait and see situation. At some point I vaguely remember Dr. Casey, Rick and some resident's, being there and asking me to close my eyes tightly and then open them. I'm also asked to smile and hold it. Closing your eyes tightly should trigger spasms if the problem persists, and they did. I also recall seeing Joan at some point for a few seconds, then it’s back to sleep. I spent all of Thursday and Thursday night in Recovery due to a shortage of beds. Had very little pain and anytime I asked for it, I immediately got Morphine, which took away All pain, and put me back to sleep. (I guess they felt guilty making me get up at 4:00 AM on Thursday and gave me the Morphine so I could catch up on last sleep. LOL). While in recovery I used a lot of ice chips and small amounts of water to keep the lips moist. I had some Grape juice and some Jell-O and was able to keep them down, something I was unable to do after MVD #1. Like the first time, every few hours I would have to have a catheter inserted to empty the bladder.
Friday, January 24, 2003, The Day After:
Later the doctors along with a group of resident’s visited me. Everyone seemed pleased with the surgery, but I was concerned that the spasms remained. I was told to be patient. Obviously they don't know me well. Or maybe they did and knew the "patience" lesson was one I still needed to learn, among others. Sometime during the day, while still in recovery, a nurse washed me off, shaved me and I brushed my teeth. Due to a lack of beds, I stayed in the Recovery Room until 10:00 PM, when I was finally taken to a room. I had very little pain, and didn't take any pain medication since leaving the Recovery Room.
Saturday, January 25, 2003, Two Days Post-op & my 58th Birthday:
Rick stopped in early for the regular visit and he wasn't able to see the spasms although I could both see them and feel them. He indicated that since I was coming along well, I'd be discharged on Sunday morning. Saturday morning breakfast was two small containers of Apple Juice and some orange Jell-O. Following my 1 st MVD I had a recliner brought to the room and I spent the night sleeping in the recliner, which was easier on my head. First thing Saturday morning I had a recliner brought in and I spent most of Saturday (day & night) and Sunday morning in it. Since I wasn't lying on my head, there was no head pain at all. On Saturday, after I started getting out of bed and walking around, the oxygen was taken away, the IV line removed and I was able to remove the T.E.D. Anti-Embolism Stockings. Finally, I wasn't attached to any wires or hoses. Saturday lunch was sliced turkey & gravy on white toast with Mashed Potatoes and gravy, pudding, iced tea and sugar cookies. Ate everything..... Joan came to visit later and wish me a Happy Birthday. After a very short visit, I told her to go enjoy Pittsburgh, since I had been doing nothing but sleeping anyway. On Thursday she had visited the Art Museum and on Saturday, she went to Church Street. The rest of Saturday was pretty uneventful. Mostly just sat in the recliner with my eyes closed, being interrupted of course with visits from the Pulmonary therapists with my breathing medications and the nurses checks of temperature, pulse and blood pressure. I had ordered Beef Stroganoff for dinner on Saturday, but after a full lunch I wasn't really hungry. I did however eat the Banana Creme Pie and drink the Iced Tea. On a few occasions I strolled the halls, quite easy, no nausea, no vertigo, no apparent hearing loss with this MVD.
Sunday, January 26, 2003, Three Days Post-op & Super Bowl Sunday - Go Bucs.:
Around 7:00 AM, Rick arrived for the pre-discharge exam and removal of the bandage covering the incision. It was then that I found out that they are using staples now instead of absorbable sutures. Rick states that he can see the spasms but feels confident that they will go away over the next few months. He says that shortly a nurse will be in with discharge instructions and I should be able to leave around 10:00 AM.
Breakfast was orange juice, scrambled eggs and bacon, raisin bran with banana and milk.
After breakfast I call Joan and ask her to come over at about 10:00 AM, which she does. I’m discharged and given a prescription for Lorcet (for pain) and told to take Tylenol if the pain is less intense. I'm given instructions not to drive, and no strenuous exercise. Additionally I'm to keep the wound dry for seven more days and to call if I have chills, temperature above 100°, or areas of redness, swelling and/or drainage.
As soon as we return to the Hawthorn Suites, I update my Diary and its back to bed.
Later I shower and shave and put on some clean sweats before having a hot bowl of Boston Market Chicken Noodle soup for dinner.
A little later, Dr. Jannetta calls to see how I'm doing. I tell him I'm feeling great, but concerned about the spasms since after MVD #1 they were gone immediately. He says "we'll keep an eye on it, no pun intended, and he'll see me on Tuesday morning".
After dinner, we watched the Tampa Bay Buccaneers trounce the Oakland Raiders in the Super Bowl and then it's off to bed again.
A: Dr. Jannetta had found two arteries on the nerve. Q: Since surgery, the spasms seem more intense, any idea why?
A: Yes, I have an idea. Dr. Aage Moeller has probably got the best work out, on concept and recording, that indicates the thing (generally an artery or vein) that touches (compresses) the facial nerve sends out an extremely high number of messages to the nucleus in the brainstem. As a result, the nucleus is hyperactive when recorded during surgery. It's firing much faster than it should. So even if you reached in and cut the person's facial nerve, and then stuck a recording needle right back in, the nucleus would still be firing like crazy. So, I think that as a result of some of the manipulations of the facial nerve during surgery, we're going to have triggered the spasms and consequently should anticipate that some people are going to wake up still in spasm. It would stand to reason that if we're doing something to the facial nerve (manipulation and decompression), we're essentially sending an incoming message to the brain. So with spasm, if you're manipulating the nerve, why isn't that simply more irritation on top of the cross compression that you, literally just seconds before, relieved by the decompression. So, the nerve is still irritated, physically deformed, mechanically irritable, all of the things that we say is the basis of vascular cross compression. So, I'm not surprised when some people wake up in worse spasm or, even if I can't see it, they say the spasms feel a whole lot worse. I think the feeling is coming from the nucleus, it's real and your brain is telling you the right thing. The good news is that the nerve doesn't look like it's sending the nuclear message anymore, which is nice, because that constant feedback loop (spasm) should begin to die off as the nucleus doesn't get feedback all the time. Q: From what you saw during surgery, and see now, are you optimistic that the spasms will eventually go away?
A: Yes. If we're pessimistic we usually bring it right up, so then the patient can decide if they want us to go back in. Q: Will the spasms leave by gradually diminishing or leave all at once?
A: Typically it's more gradual. The timeframe we're talking about now is between 23 and 24 weeks median time. That's what's in current literature. Q: Since we've now done this twice, what's the chance of another occurrence, and do some people have a greater potential for reoccurrence?
A: The second answer is yes. Obviously if you're here for a second, you'd have to say that statistically you're at greater risk. But I think when a surgeon is standing over a patient a second time, you're saying to yourself ok, anything that I even think was an offender has got to go (get padded). Whereas first time around as soon as you lift a vessel and they say ok, that's it, typically we're padding and getting out of town. But I think during this MVD, there was more looking, more padding and more thinking that we don't want to be looking at this a third time, so let's see what else we can see. Q: Why are second MVD's so much easier on the patient than the first? I had no nausea, no vertigo, nothing.
A: We've heard that over and over again so that we know it to be physically true. Rick (Physician's Assistant) and I have been looking at that trying to decide. With some people it's not even MVD's. We've done some mid-line decompressions and then the patient comes back for an MVD and they say the same thing. It might have something to do psychologically, in that the patient knows what's coming, they know what to expect. Obviously you could argue that some of the dissection was done during the previous surgery, except that we do, and in your case we did, some of the same dissection again, meaning opening the soft covering tissue called the arachnoid (A delicate membrane that encloses the spinal cord and brain, and lies between the pia mater and dura mater); removed extra bone and freshened the edges and, the dura is still opened. In some cases we're even in a new site and we have to remove the bone because the patient had another type of surgery. We recently had a patient that had Hemifacial Spasm, but had a Chiari, so he fixed that first and then came back for the MVD so, for all intent and purposes, the MVD was a virgin operation in that site. The patient wakes up the first night of surgery and says "Can I go home"? So we said humor us, stay overnight, and he actually left during mid-day of the day following surgery. We have no explanation for that. Q: For the past few days I've been hearing intermittent clicking in the non-hfs ear, is that typical?
A: Yes Q: Should this also go away in time?
A: Yes Q: In 2000, you used absorbable sutures, this time you used staples, why the switch?
A: With the absorbable sutures there was a slightly higher incidence of wounds gapping, not necessarily getting infected, but gapping. So, we went to nylon mattress sutures, because they were a broader stitch, with the intent of pulling the tissue together and keeping the tissue edges everted better. But we still had a little more gapping. The staples are nice because they work well and, are so popular in the United States, that you could walk into virtually any doctors office, with the remover we're going to give you (see picture below), and somebody in that office is going to be able to take them out easily.
Monday, January 27, 2003, Four Days Post-Op:
Since I had been constipated since surgery I took Milk of Magnesia twice on Sunday and finally at 1:45 AM there is relief. At 8:00 AM, although it's 1° outside we decide to drive to the hotel for their complementary breakfast. After scraping the windshield, we worked about five minutes to get a frozen car door opened so we could get in the car. Good choice, had orange juice, pancakes wrapped around blueberry jam, sausage links and hot coffee. Joan, being more health conscious, had a toasted bagel with cream cheese, cranberry juice and coffee. As we watched a little of The Early Show as we ate by the fire, the temperature rose 100%, from 1° to 2°. After breakfast it was back to the room and back to sleep until 12:50 PM. At 2:15 PM, I shave, shower and pack one of my bags to start the departure process. We go out at 3:00 PM for a trip to Robinson Town Center for an early dinner at Eat'n Park Family Restaurant and then off to the movies to see Gangs of New York. Was really too long of a movie for someone who already has a sore butt. After returning to the Hawthorn, I placed a return call to Marcia, and watched some TV as I prepared my list of questions for Dr. Jannetta. The bags are mostly packed, I shower, shave and I'm ready to roll in the morning.
Tuesday, January 28, 2003 - Day Five Post-Op and Date of Departure for Home:
Again only slept about four hours last night. So I'm out of bed at 7:00 AM, and after packing the car and checking out, it's off to Allegheny General for my 8:30 AM follow up appointment with Dr. Jannetta. Upon arrival, Dr. Casey and the visiting doctor from Brazil see me first. Following Dr. Casey's examination I then posed the following questions and received the following answers: Q: What did you find during surgery as the cause of the spasms?A: Dr. Jannetta had found two arteries on the nerve. Q: Since surgery, the spasms seem more intense, any idea why?
A: Yes, I have an idea. Dr. Aage Moeller has probably got the best work out, on concept and recording, that indicates the thing (generally an artery or vein) that touches (compresses) the facial nerve sends out an extremely high number of messages to the nucleus in the brainstem. As a result, the nucleus is hyperactive when recorded during surgery. It's firing much faster than it should. So even if you reached in and cut the person's facial nerve, and then stuck a recording needle right back in, the nucleus would still be firing like crazy. So, I think that as a result of some of the manipulations of the facial nerve during surgery, we're going to have triggered the spasms and consequently should anticipate that some people are going to wake up still in spasm. It would stand to reason that if we're doing something to the facial nerve (manipulation and decompression), we're essentially sending an incoming message to the brain. So with spasm, if you're manipulating the nerve, why isn't that simply more irritation on top of the cross compression that you, literally just seconds before, relieved by the decompression. So, the nerve is still irritated, physically deformed, mechanically irritable, all of the things that we say is the basis of vascular cross compression. So, I'm not surprised when some people wake up in worse spasm or, even if I can't see it, they say the spasms feel a whole lot worse. I think the feeling is coming from the nucleus, it's real and your brain is telling you the right thing. The good news is that the nerve doesn't look like it's sending the nuclear message anymore, which is nice, because that constant feedback loop (spasm) should begin to die off as the nucleus doesn't get feedback all the time. Q: From what you saw during surgery, and see now, are you optimistic that the spasms will eventually go away?
A: Yes. If we're pessimistic we usually bring it right up, so then the patient can decide if they want us to go back in. Q: Will the spasms leave by gradually diminishing or leave all at once?
A: Typically it's more gradual. The timeframe we're talking about now is between 23 and 24 weeks median time. That's what's in current literature. Q: Since we've now done this twice, what's the chance of another occurrence, and do some people have a greater potential for reoccurrence?
A: The second answer is yes. Obviously if you're here for a second, you'd have to say that statistically you're at greater risk. But I think when a surgeon is standing over a patient a second time, you're saying to yourself ok, anything that I even think was an offender has got to go (get padded). Whereas first time around as soon as you lift a vessel and they say ok, that's it, typically we're padding and getting out of town. But I think during this MVD, there was more looking, more padding and more thinking that we don't want to be looking at this a third time, so let's see what else we can see. Q: Why are second MVD's so much easier on the patient than the first? I had no nausea, no vertigo, nothing.
A: We've heard that over and over again so that we know it to be physically true. Rick (Physician's Assistant) and I have been looking at that trying to decide. With some people it's not even MVD's. We've done some mid-line decompressions and then the patient comes back for an MVD and they say the same thing. It might have something to do psychologically, in that the patient knows what's coming, they know what to expect. Obviously you could argue that some of the dissection was done during the previous surgery, except that we do, and in your case we did, some of the same dissection again, meaning opening the soft covering tissue called the arachnoid (A delicate membrane that encloses the spinal cord and brain, and lies between the pia mater and dura mater); removed extra bone and freshened the edges and, the dura is still opened. In some cases we're even in a new site and we have to remove the bone because the patient had another type of surgery. We recently had a patient that had Hemifacial Spasm, but had a Chiari, so he fixed that first and then came back for the MVD so, for all intent and purposes, the MVD was a virgin operation in that site. The patient wakes up the first night of surgery and says "Can I go home"? So we said humor us, stay overnight, and he actually left during mid-day of the day following surgery. We have no explanation for that. Q: For the past few days I've been hearing intermittent clicking in the non-hfs ear, is that typical?
A: Yes Q: Should this also go away in time?
A: Yes Q: In 2000, you used absorbable sutures, this time you used staples, why the switch?
A: With the absorbable sutures there was a slightly higher incidence of wounds gapping, not necessarily getting infected, but gapping. So, we went to nylon mattress sutures, because they were a broader stitch, with the intent of pulling the tissue together and keeping the tissue edges everted better. But we still had a little more gapping. The staples are nice because they work well and, are so popular in the United States, that you could walk into virtually any doctors office, with the remover we're going to give you (see picture below), and somebody in that office is going to be able to take them out easily.
Q: Are the staples to be removed seven (7) days from surgery or discharge from the hospital?
A: They can be removed two (2) weeks following surgery. Shampooing is fine, showering is fine, etc. With that we are finished and I thank Dr. Casey and wait for Dr. Jannetta to arrive. Shortly thereafter, Dr. Jannetta arrives with his broad smile and a hearty handshake. We go over how well I feel, and he goes through the standard blink & hold; smile and hold tests. After discussing the remaining spasms, he indicates that he supports Dr. Casey's optimistic outlook that the spasms should cease in time. With that I'm given on OK to go home. After thanking all of the staff, it's now time to head for the airport for a 12:10 PM flight to Tampa. Pittsburgh's under a winter storm advisory for snow, and we're praying that we get out of Pittsburgh as scheduled. The flight is uneventful and we arrive in Tampa at 2:28 PM. I had reserved a wheel chair the night before so we we're met at the plane and I was given a ride down to baggage claim. After having a porter collect our bags and take them outside, we await the parking lot van. As soon as we sit down outside, Joan and I both mention how lucky we are to be back in Florida with bright sunshine as we sit in 68° weather looking at the flowers and palm trees. After the van arrives and takes us to the car, we load the bags in the trunk and I'm driving us on the hour trip to Sarasota. At 4:00 PM, after expressing my thanks to Joan, I drop her at her Condo and drive the 10 minutes to home and get reacquainted with Alibi, my cat. After unpacking, washing and drying laundry, paying some bills and reading some e-mail, it's time to start relaxing.
A: They can be removed two (2) weeks following surgery. Shampooing is fine, showering is fine, etc. With that we are finished and I thank Dr. Casey and wait for Dr. Jannetta to arrive. Shortly thereafter, Dr. Jannetta arrives with his broad smile and a hearty handshake. We go over how well I feel, and he goes through the standard blink & hold; smile and hold tests. After discussing the remaining spasms, he indicates that he supports Dr. Casey's optimistic outlook that the spasms should cease in time. With that I'm given on OK to go home. After thanking all of the staff, it's now time to head for the airport for a 12:10 PM flight to Tampa. Pittsburgh's under a winter storm advisory for snow, and we're praying that we get out of Pittsburgh as scheduled. The flight is uneventful and we arrive in Tampa at 2:28 PM. I had reserved a wheel chair the night before so we we're met at the plane and I was given a ride down to baggage claim. After having a porter collect our bags and take them outside, we await the parking lot van. As soon as we sit down outside, Joan and I both mention how lucky we are to be back in Florida with bright sunshine as we sit in 68° weather looking at the flowers and palm trees. After the van arrives and takes us to the car, we load the bags in the trunk and I'm driving us on the hour trip to Sarasota. At 4:00 PM, after expressing my thanks to Joan, I drop her at her Condo and drive the 10 minutes to home and get reacquainted with Alibi, my cat. After unpacking, washing and drying laundry, paying some bills and reading some e-mail, it's time to start relaxing.
Thursday, January 30, 2003 - Day Seven Post-Op:
I feel so fortunate that I didn't experience the nausea, vertigo or hearing loss experienced following MVD #1. Now it's time to try to be patient and wait to once again be spasm free. The information and support received from all of the HFSA members gave me the confidence to go for it. For this, I sincerely want to thank each and every member of the Group. I was extremely impressed with everyone I interacted with in Pittsburgh, including all of Dr. Jannetta's staff and everyone I encountered at Allegheny General Hospital. Dr J., in my opinion, has a truly spectacular team, personally and professionally and I want to thank them all for their consideration and kindness. Made an appointment with my primary care physician for February 07, 2003 for staple removal, and then spent two hours at the beach enjoying the sound of the surf and the warmth of the sun. Best way to heal that I could think of.
Friday, February 07, 2003 - Day Fifteen Post-Op:
Took my "Skin Staple Remover" to my doctors office, where a Nurse removed the staples and indicated that the incision looked good. For the past week the spasms have begun to subside.
Sunday, March 23, 2003 - 1 Month Post-Op:
On my one month anniversary I am pleased to announce that the spasms are gone and I am once again SPASM FREE.
My special thanks to the entire Jannetta/Casey team for once again working their magic.
For details of my Botox® use see my Personal Botox® Experience.Back to top HFSA HOME
Copyright © 2001, The Hemifacial Spasm Association (HFSA) Rev. 040901
For details of my Botox® use see my Personal Botox® Experience.
For details of my HFS experience leading up to my 1 st MVD see my Personal HFS History.
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Jack O'Donnell, February 01, 2003