MVD Diary - Anastasios (Tassos) Panas
Monday, January 9, 2006 - Day of Departure/Arrival:
My wife, Cathy, and I set out for the 6 hour drive to Pittsburgh around 3:30pm from Philadelphia. Saying goodbye to the kids was a little emotional – they are only 6 and 4 and they think Dad is going in for a minor eye operation. I hug them very tight – they will have fun with their grand parents no doubt. We jump on the PA turnpike and drive for about 4 hours before we stop for dinner at a place called Ted’s Steak House. Enjoy a large steak dinner – which in hindsight I probably would not have done because I was somewhat constipated following surgery and I think the steak added to that problem.We finally arrive just after 10:00pm to Family House Shadyside. The front desk has already closed for the night but luckily we had called earlier and the night manager was there to let us in. The place looks nice. It has a large communal kitchen area with a storage bin for every guest, and has large open sitting areas so you don’t have to stay cooped up in your room all the time. The other guests were all very nice, and many of their medical issues made my impending MVD seem insignificant. We met people waiting for double lung transplants, heart/lung transplants and one gentleman was waiting for 5 organ transplants.
Tuesday, January 10, 2006 - Pre-Surgical Testing:
The day started early by catching the 7:00 am shuttle from Shadyside Family House to UPMC Presbyterian. The shuttle was number 201 and stops at all three family house locations, plus UPMC Presbyterian and Montefiore.The first thing we had to do was register at the 1st floor Presbyterian. This took about 15 minutes and officially got me into their computer system and gave me a wrist bracelet. I remember thinking that this is it – no turning back now! After registration we went to the 8th floor for my first test at 8:30am – the BSER which if I recall stands for Brain Stem Evoked Response. This essentially evolved a bunch of electrodes placed on my head with gel and various electrical signals measured – this was not a painful or uncomfortable process although it had to be done twice as the girl operating the machine was new and she didn’t do it right the first time.
After this test I was taken to the room just down the hall, still on the 8th floor were I met Dr. Soso, who with his assistant, did the EMG. Very nice man who took the time to draw a skull and explain in detail to my wife and I what was happening with the electrical signals along the 7th cranial nerve in the head of someone with HFS. This process required some needle insertions in my face, but I did not find it too uncomfortable. If you have ever had Botox®, it's a very similar sensation. Towards the end of the test he had to send a few electric shocks through my face to confirm the lateral spread and that was a little uncomfortable, but not unbearable. The purpose of these electric shocks was to show how an electric impulse that was initiated in the chin region, instead of it going up through the 7th cranial nerve in just one direction (as it should), it would bounce off the area where the compression was and end up in my eye. This phenomenon confirms the existence of HFS and to an extent was a relief to have someone actually say you definitely have this disorder.
At noon I met with Lois (Dr. Kassam’s assistant) and Dr. Kassam. I was amazed that he remembered both my wife and I from a brief encounter 2 years ago at the HFS conference in Pittsburgh. I found him to be extremely smart, warm and funny – I felt comfortable straight away and had the sense that I was in good hands. For my own piece of mind I confirmed that he personally would be doing the surgery. He said he would do the actual decompression but residents would be involved in initiating and closing the incision site. This did not concern me at the time until after the operation I realized that one of the complications I had (a CSF leak) may have been caused by not using extremely fine suturing when closing the Dura (the leather type material that covers the brain) – more about this complication later on.
At 2:00pm that afternoon I went to the eye and ear institute on the 4th floor, in between Presbyterian and Montefiore for my hearing tests. These are used to establish a base line for hearing to compare with after the surgery and determine if the surgery resulted in any hearing deterioration. The only advice I would give to anyone is that if you are prone to wax build up in your ears, have them cleaned out by a doctor prior to your trip to Pittsburgh. This will make the hearing tests easier and help minimize any feelings of swelling and pressure in the ears following the surgery. The hearing test, as expected, was easy and not uncomfortable.
At 3:30pm I went over to Montefiore Hospital for pre-admission testing where I was once again asked a million questions about my medical background, gave a urine and blood sample, and that was it.
At 5:45pm (loooong day) I had an appointment for a MRI. Unfortunately the wait was quite lengthy and I didn’t get done until 8:00pm – the MRI was done with and without contrast. When I came out of the MRI room my brother in-law, a doctor from Philly, and my wife’s auntie (I guess that makes her my auntie in-law) met me. They had flown in from Philly to provide emotional support during the day of the surgery. I very much appreciated it and was happy that my wife would be with family when I went under the knife.
We all went off and had a quick dinner and I was in bed by 10:00pm. I slept about 3 hours max – way too nervous, spent most of the night looking at the constant coming and going of the Hospital helicopter!
Wednesday, January 11, 2006 - MVD Day:
The surgery was scheduled for 8:00am, so we had to be there at registration by 5:30am. We decided to drive and valet park the car at the hospital as my wife said it was free the day of surgery. Needless to say it was a nerve racking morning and we did not say much on the way over in the car.After waiting for about 10 minutes in the surgical waiting room, a lady called my name along with others who were scheduled for surgery that day. She called about 6 names, but, I came to find out later that over 30 people were having surgery that morning at 8:00am – hopefully they wouldn’t get us confused.
They showed my wife a closet where she could store my clothes and other things and gave her a key. Then back into a ER type room with lots of activity and I was assigned a bed and asked to put on the very high fashion gowns, as you would expect at a hospital. I was now dressed and ready to go and it was only 6:30am – I had an hour and half to wait.
Luckily, my wife, brother in-law and auntie in-law were all there to keep me entertained. My wife had bought pictures of my boys which we taped to the bed and the anesthesiologists was really funny and he kept bringing over residents to look at my spasms and then put them on the spot to diagnose my condition. One of the residents came over and drew a big black cross on the impending incision site – this gave me some relief because it was on the right side of my head. Well, before I knew it, it was 8:00am and I was saying goodbye and being wheeled off. My wife got a little emotional at this point, but I was ready to get this over and done with.
The next few minutes are very hazy. I remember being wheeled into the OR and thinking how different it looked to the ones I had seen on TV and then I woke up in recovery.
I was obviously very out of it in the recovery area and I only remember four things: I remember somebody saying I had a rash on my chest and that I was probably allergic to morphine (this was confirmed later), I remember the nurse saying that my heart rate was very high, I remember that "MY SPASMS WERE GONE", and I remember my wife popping in for a few minutes to see me.
After about 4 hours I was transferred to a step down room and a more comfortable bed. I remember the nurses saying that my heart rate was still too high although I could not see the monitor which was behind me. At one very scary point when my wife had just come in, my heart rate started escalating dramatically and I was in SVT (heart rate raced up to 190). Bells started going off and I could hear the speaker declaring a Code C. Before I new it, I had almost 15 people in my room looking to put something into my IV and get my heart under control. The first substance they inserted had the apposite affect and made my whole body feel flush and escalated my heart rate even more. I could tell from their reaction that this was not good and could hear them saying “flush that out, flush that out”. The second substance seemed to have an immediate impact in bringing my heart rate down, and again I could tell from their facial reactions that this was good and the sense of urgency was subsiding.
Just to be clear, this response was in no way related to the MVD procedure itself, but has been an underlying heart issue that I have had for many years and any surgery could have exposed it in this manner. In a way I am very lucky that this was uncovered in the safety of a hospital. I am now on heart medications and need to start seeing a cardiologist to manage this over time.
Thursday - Saturday, January 12-14, 2006 - Post-Op Days 1 - 4:
After a day in the step down unit I was transferred to a nice private room on Thursday, January 12. Headache is quite strong, and feeling nauseous. I also feel dizzy when I try to walk, need someone to lean on. Not really interested in eating anything. Pain seems to get worse in the evenings starting around 6:00pm. Eyes become very sensitive to light and usually ask my wife to turn off the TV to help sooth the pain. By the way, if you are going to do this surgery it’s really helpful to have someone with you the whole time – spouse, family member, friend, anyone. I don’t know how I would have gotten through it with out the support and help of my wife.
I am still spasm free – not even a flicker – knock on wood.
Sunday – Wednesday, January 15-18, Post-Op Day 5 - 7:
On Wednesday we head back over to Dr. Kassam’s office to have the stitches removed. Nurse Patti appears to have a little difficulty, as some of the stitches appear to be deep and not easily removed. Finally, after some more aggressive manipulation, she gets them out. Dr. Kassam pops into the office for a few minutes and we have a nice chat. Everything looks in order, we say our good-byes and thank you’s and it looks like we are good to head out of Pittsburgh.
One thing I would like to mention and recommend to anybody considering an MVD. If I had to do it again I would not do it in the middle of winter. I found the cold very difficult to deal with for the first 2 to 3 weeks following surgery. On the days when I had to go outside for whatever reason, no amount of extra clothing stopped me from shivering severely and the shivering caused the incision area to hurt significantly.
Thursday, January 19, Post-Op Day 8:
As we wait at the airport garage for him to arrive I suddenly feel a sensation on my wound that a liquid is oozing out. I tell my wife and she quickly jumps into the back seat to observe. Sure enough she confirms that a clear liquid is oozing out from the wound. Well, I have been a member of the Hemifacial Spasm Association long enough to know exactly what was happening – I was experiencing a CSF leak – a relatively rare complication that would delay my departure from Pittsburgh. To put it mildly, we were both devastated.
We wait another hour or so until my brother-in-law arrives and we give him the bad news. He takes it all in stride and decides to drive us back to Dr. Kassam’s office and spend the day with us in Pittsburgh.
We get back to Dr. Kassam’s office and we are immediately taken to the back. Dr. Kassam is paged and arrives within 15 minutes and examines the wound. The look on his face confirms our initial diagnosis and we begin discussing options. Basically he presents 2 options – the first involves going back in via surgery, finding the leak, and resolving it. The second involves having a lumbar drain put in to relieve some of the CSF pressure and letting the leak heal itself over the next 5 days. By the way CSF is the name for your spinal fluid that encompasses your spine and brain. The choice is easy for me – because of my heart condition that was exposed in the first surgery I would like to avoid another surgery at all costs. I prefer to have a lumbar drain done.
Patti, the nurse from Dr. Kassam’s office, is assigned to stick by our side for the next few hours to oversee my re-admission to the Hospital and the insertion of the lumbar drain. We are sent to radiology because we are told they have an X-ray machine that facilitates the guidance of the lumbar drain into the correct spot with out hitting any of the nerves. After waiting for 2 hours we are then told the radiologists refuses to do the procedure because the machine is not working and he won’t do it without it. We are then taken away from radiology and we complete the re-admission process and I am given a room on the 8th floor near the room I had just a few days ago. After an hour, at about 4:pm, Patti comes back and tells me the machine is working again and we should head down to get the lumbar drain inserted.
We get to the room and I am asked to lie on my side. Apparently the machine was still broken but, due to my medical condition, the procedure needed to be done . Dr. Horowitz begins the process of inserting the lumbar drain and the pain is unbearable. As he works, the needle he is using appears to hit my nerves sending violent electric shocks down my legs causing them to convulse uncontrollably – this happens 6 or 7 times. The pain in my back is severe as well, but nothing like the electric shocks that are being sent down my legs. Finally, he indicates the lumbar drain is in, but I am physically and emotionally spent from the pain.
I need about 15 minutes to compose myself and then I'm wheeled back to my room. I am told I need to keep the lumbar drain in for 5 days to give the Dura (the sack around the brain that is leaking) enough time to repair itself. They drain the fluid from the back spine through the lumbar drain to reduce the pressure in my head, giving the Dura time to heal itself naturally. The fluid is collected at a precise rate of 80cc over 8 hours and the flow must be monitored accurately. The spinal fluid is also tested for infections and blood is drawn for white cell count, another test for infection. The headaches that follow the fluid reduction are very strong. Apparently this is part of the process in draining the fluid and how your body reacts.
The CSF leak is caused by the Dura leaking somewhere along were it was stitched up at the end of the surgery. This complication happens in about 3% of patients that have an MVD, higher complication rate for other types of brain surgery. What I was not aware of prior to the surgery is that certain things can aggravate or initiate a CSF leak following surgery – things like a violent sneeze, severe coughing (another reason not to do this during winter), shivering from the cold, etc. I do recall the evening before we discovered my leak, my wife and I were eating Chinese food at the Family House celebrating our impending return home. A piece of food went down the wrong way and caused a violent sneeze – for whatever reason I tried to muffle the sneeze by not letting it out all at once (there were other people around) and it came off like a mini explosion in my head. Could this have been the cause, I guess we'll never know. But my advise to you is don’t do the operation during winter – less chance of being impacted by the cold temperatures and less chance you will get a cold or a flu during recovery and have to deal with coughs and sneezes. Also don’t worry about being rude when you sneeze, let the air out your mouth fully – don’t hold it back.
Friday - Tuesday, January 20 - 24, Post-Op Day 9 - 12:
The drain is working, but does not drain at the pace they would like to see. On the positive side the leak at my wound appears to have ceased and hopefully things are healing the way they are supposed to. There would be signs of fluid through my nose, wound and/or ear if the Dura was not healing.
On Saturday night we have a small episode. My in-laws have driven across from Philly with the kids, which was a wonderful surprise, and they are all in my room chit chatting when suddenly I notice my back is soaked. We call the Doctor who confirms the lumbar drain is leaking from my back – again not good.
The Doctor puts a new patch on my back to try and hold the drain in place and minimize the leaking. The next day they decide to remove the lumbar drain because of the leak and because it really isn’t draining that much. They will observe me until Tuesday and if I don’t leak I am free to leave. FYI – with a CSF leak you leak a clear fluid from the wound, the ear or the nose. As you can imagine we kept a careful eye on those areas – luckily no leak!
Tuesday we are released from the Hospital but unfortunately the Family House is full so we go down the road to the Quality Inn. We must stay here until Thursday at which time I have another appointment with Dr. Kassam
Thursday, January 26, 2006 - Post-Op Day 14:
We go back to our hotel, pack our stuff as quickly as possible and get on the road in the hopes that if we get out of Pittsburgh quick there might be less chance of another leak.
FYI – I am still spasm free and have been since surgery. I still have a dull headache for most of the day and it gets worse at night. However I can tell I am getting stronger everyday.
That night we surprise our kids with dinner back in Philadelphia – life is sweet!!
Friday, January 27, Post-Op Day 15:
I will keep an eye on this and see if it gets worse. If it does I will call Lois at Dr. Kassam’s office. Could be just that I changed shampoo from my regular brand to Baby Shampoo which they say is more gentle on the incision – maybe I am having a slight allergic reaction to the Baby Shampoo.
Monday, January 30, Post-Op Day 21:
Friday, February 3, Post-Op Day 24:
Wednesday, February 15, Post-Op Day 33:
Wednesday, March 1, Post-Op Day 39:
Sunday, April 20, 2008 - Over 2 years Post-Op:
To add to this process about 4 weeks ago I started to feel pressure around the incision area. Although the incision itself is not painful, this sensation of pressure is clearly coming from that area. It almost feels like it did maybe 3 weeks after surgery when I was going through my recovery phase. I can’t bend over without feeling an uncomfortable sensation around the incision area and I feel like I am stretching the area when I turn my neck. I have gotten a new MRI and am trying to schedule an appointment with either Dr. Kassam or Dr. Zager at the University of Pennsylvania.
Permission granted the HFSA to post MVD Diary on website.
Anastasios (Tassos) Panas, March 7, 2006