MVD Diary - Steve Eiseler
Wednesday, September 17, 2008 – “MVD Day”:
I checked into the surgery area of Detroit Receiving Hospital at 8:45 a.m. and my surgery was scheduled for 10:30 a.m. After sitting in the reception area for a few minutes with my family, I was taken to the pre-op area. Once there, my vitals were taken, the main IV was started and I met briefly with the Anesthesiologist. After I was all prepped my family was able to join me as we waited for the MVD to begin. Dr. Casey and a colleague came in briefly to discuss the surgery and possible side effects. I had been researching MVD surgery for over a year so there were no surprises during these discussions. At about 10:45 I was wheeled to the operating room after my family was assured that everything would be fine. The last thing I remember was moving onto the surgical table and someone putting a mask on me and telling me good night.My next memory was in the recovery room, at about 3:30 p.m., with my wife at my side. She assured me that everything had gone well. I had been concerned about hearing loss so I was pleased that I could hear out of the MVD side ear. I do recall that the sound was very intense and almost painful. From that point on I faded in and out for a few hours. Dr. Casey made an appearance at some point to ask how I was feeling. By the time Dr. Casey arrived, my surgery side hearing had diminished significantly and there was a waterfall sound present. He commented that everything was normal and my hearing might return to normal during the healing process. He also explained that I had 5 blood vessels impinging on the 7th and 8th cranial nerves, not just the one that had been clearly visible in the MRI. Dr. Casey explained that he was able to reduce the lateral spread response by 50% but was unable to continue further due to concerns related to the involvement of the 8th nerve and possible hearing loss. He asked how my spasms were and I responded "what spasms"? They were gone! No eye twitching, no cheek or mouth tugging, I was ecstatic. I decided right then, during my post-op haze, that I could live with whatever hearing loss I experienced. I was grateful that I had any hearing at all since the spasms were gone.
The ICU was full so I was in the recovery area until about 9 pm, waiting for a room. My catheter was removed during the wait time. I was fully awake and feeling great, eating ice and drinking juices. No nausea, no headache, just laying there taking in the activity of the recovery room. I was then moved to a room in the ICU. After the nursing staff checked me in, I had a peaceful night sleeping (in between the staff coming in and checking vitals of course!). During the night I had been up to the bathroom a couple of times and was amazed at how well I felt.
Thursday, September 18, 2008 – “The Day After”:
The next morning, after breakfast, Dr. Casey arrived and after a brief assessment asked me if I wanted to go home. I couldn’t believe it, less than 24 hours after brain surgery I was being asked if I wanted to be released. I responded with a resounding "YES"! I reminded the doctor that I had a 3.5 hour car ride home and he said they would administer a little extra cocktail to make my ride comfortable. By the time my wife arrived at 9:45 a.m., I was dressed and ready for the road. I don’t remember much of the ride home but I do remember that I was still amazed that I was home so soon after surgery. I slept most of the rest of the day after removing the bandage, showering and counting my 13 staples a couple of times
Days Three through Six:
My days consisted of rest and relaxation. During this time we were blessed with beautiful Northern Michigan fall weather and we were able to spend time going for walks and lounging outside on our deck. I recall that I was still amazed that I felt so good and that I hadn’t experienced any of the post surgery discomforts that I had read about.
Day Seven:
I woke up feeling different than I had the previous days. I had a slight stiff neck and minor headache. I chalked it up to sleeping too long. As the day progressed, the stiff neck and headache got worse so I decided to take some of the pain medication that had been prescribed. It didn’t seem to help much and by 10 pm that evening I had a crushing headache. I was extremely sensitive to light and sound by that time and decided to go to bed. My wife was concerned that I felt a little warm and in fact was running a low grade temperature. I had a fitful night. I couldn’t get comfortable and what I thought was the worst headache of my life got worse.
Day Eight:
I don’t remember much of this day. I couldn’t get out of bed for more than a few minutes at a time and the stiff neck and headache were intense. I could not stand any sound or light and, according to my wife, I was extremely irritable. She tried to reach Dr. Casey’s office several times during the day and finally made contact with his nurse in the afternoon. Dr. Casey was out of town but someone would call back. Unfortunately that call didn’t happen and my wife was ready to pack me up and take me to the ER. I resisted, thinking back about some of the things I had read and convinced myself that maybe the situation was normal. I spent another fitful night wondering if the headache and neck pain would ever go away.
Day Nine:
My persistent wife began attempting to reach Dr. Casey very early in the morning. My condition had not improved and I was still not able to be out of bed for more than a few minutes at a time. Dr. Casey was able to return her call as soon as he arrived at his office. He diagnosed my symptoms as aseptic meningitis and explained that 5-8% of surgery patients contract the condition. It was being caused by an allergic reaction to the Teflon felt used to pad off the nerve and impinging vessels. He told my wife that the symptoms usually last 5-14 days and that he would prescribe a high dose steroid (Medrol) and something to protect the stomach (Zantac) because the steroid usually caused stomach irritation. He also prescribed a different pain medication (Fioricet). I had been taking Vicodin but wasn’t getting much relief. He also provided a pager number to reach him without delay. I began taking the new prescriptions early in the afternoon and by evening was feeling a little better. I was able to sit upright and actually watch some television.
Days Ten and Eleven:
Although the medications seemed to be helping I still suffered with the stiff neck and headache. The degree of both had lessened but I was uncomfortable nonetheless. I just wanted to return to feeling like I had the first week after surgery! Late in the evening on the 11th day, my heart began skipping beats. It was a condition that I had never experienced myself but had made several trips to the ER with my mother who has atrial fibrillation. I didn’t panic, and decided to wait until morning to see if it persisted. It did and I called the pager number for Dr. Casey. He was in surgery but I was able to speak to one of his colleagues and she determined it was best to discontinue the Medrol until she could speak to the doctor. She said that if she didn’t call back, Dr. Casey had agreed with her suggestion. No call so I discontinued the Medrol.
Day Twelve:
I experienced an increase in the intensity of the stiff neck and headache when I woke up. Back to the pager number! Again Dr. Casey was in surgery and I spoke to the same person as the day before and unfortunately I can’t remember her name (I blame it on the drugs!). She was again very concerned and suggested that I start taking the Medrol again but only at half of the dose. Within a couple hours of starting the Medrol the pain from the stiff neck and headache were reduced and I didn’t experience any more irregular heart rhythms.
Days Thirteen through Twenty one:
I had good days and bad days during this time. My dosing schedule of Medrol ran its course and I was only taking a pain pill occasionally. I had my staples removed at the three week mark. I remember feeling very fatigued and wanted to sleep a lot (which is not normal for me). Looking back there was steady improvement albeit too slow for my impatient nature! I attempted a couple of days back at the office, but decided after a couple hours each time to return home.
Present - October 28, 2008:
I am 5 weeks past my surgery date. I returned to work full time after four weeks. No more headaches or stiff neck. More importantly the spasms that I had suffered prior to the surgery have for the most part subsided! I still get an occasional tug at the corner of my mouth when speaking but all the other spasms and twitches are gone. I am optimistic that I will be able to report soon that I am Spasm Free, but the improvement is significant and I would estimate is 90-95% improved. My hearing has improved slightly but I do have significant hearing loss on the MVD side and have a constant ‘wind’ noise. My follow up appointment with Dr. Casey is at the 12 week mark, which will be in December 2008. I will have an Audiogram prior to that appointment and will discuss the results with the doctor.I do not regret my decision to have the surgery even though I had a rough couple of weeks with the Meningitis. To have the HFS demon at bay was worth every second. Thank you to all that contribute to the HFS website and the Yahoo newsgroup. The wealth of knowledge and experience contributed is priceless. Thank you Jack for convincing me to stay a part of this group and for all the work you do keeping it together. I must also express my sincerest thanks to Dr. Casey, his staff and the staff at Detroit Receiving Hospital for their professionalism and contributions to assisting those of us suffering from HFS.
If I can share my experiences with Botox or my MVD surgery, please feel free to contact me.