I am now one month post MVD for vago-glossopharyngeal neuralgia (actually it is classified as atypical group2). The classification means that I had constant severe pain with intermittent shooting electric-like pain that could be triggered by temperature change, chewing, or skin stimulation, or any of a number of things. I had intermittent hoarseness, difficulty swallowing and random syncopal episodes which were really quite inconvenient. So that is that in a nutshell. I know a lot of people struggle with the dilemma of whether to have the MVD surgery or not, and if they do decide to have it, where should they go and who do they want to perform the surgery. I had this exact dilemma so I thought I would share my experience with you.
I had been having symptoms for over 4 years. The pain was controlling my life. My stress level was through the roof from dealing with this chronic pain that no one else in the world, it seemed, understood. My neurologist was at his wit’s end trying to do something to control the pain--to no avail. I knew the time had come. I wanted my life back.
I began researching neurosurgeons, hospitals, statistics etc. I decided to consult Dr. Fukushima in Raleigh/Durham, NC. Dr. Fukushima had worked with Dr. Jannetta in Pittsburgh to develop the procedure. Their concept for MVD was based on the theory that GPN is not so much a nerve problem but an artery problem. All the surgical procedures previously had targeted the nerves as the culprit. On my first visit to Raleigh (I’m from Louisville KY, Go Cardinals), I met face to face with Dr. Fukushima for well over an hour discussing everything in great detail. He has done more MVD procedures for GPN than any other neurosurgeon in the country. He gives seminars and continuing education programs on MVD, GPN, as well as other skull base surgeries. His success rate with typical GPN is 98%. My case, however, was different. With atypical GPN, he said that the success rate was only 50% because of the severity of the symptoms. I’m not a gambler; however I do know what 50/50 means. He said that even if there wasn’t a complete cure, there may well be an improvement in symptoms. He insisted that I take some time to digest all that we had talked about. He didn’t want me to feel rushed or pressured into having the surgery. He said I was definitely a candidate for the surgery but after hearing all the information he wanted me to be sure. I add at this point that Dr. Fukushima is over 70 years old. Normally that would affect my decision; however, in this case, he looks like he is 40, his mind is very sharp and his hands appear very steady. I decided that his experience outweighed any reservation I may have had about his age. After a month had passed, I scheduled the surgery for May 6.
Because I also have lupus and sjogren’s syndrome, Dr. Fukushima wanted to do the surgery at Duke University instead of in Raleigh in order to have immediate availability of specialists. Dr. Zomorodi at Duke was my neurosurgeon at Duke. As it happened, Dr. Fukushima was the primary physician only for the surgery and Dr. Zomorodi assisted. All of my other care was provided by Dr. Z. and the Duke neurosurgery team. I remember very little about the actual day of the surgery except that I woke up from the anesthesia with NO GPN pain. For the first time in over 4 years it was gone! I had gotten the better half of the 50/50!
I was in the neuro ICU for 2 days and except for a bad headache did very well. Home to my daughter’s house in Durham I went. As each day passed my headache got worse and worse and spinal fluid started leaking out my nose. I couldn’t eat or drink. I was scheduled for a swallowing test about 5 days after my discharge so I went for that and failed the swallow test. I was aspirating clear liquids and nectar thick liquids. I told the Dr. performing the test that I was leaking spinal fluid. He told me to contact my Neuro Dr. if I really thought that and sort of brushed me off. I knew I was leaking spinal fluid, I just didn’t know if that was normal post-op. Guess what? That is NOT normal post-op. I was readmitted to the Neuro ICU. A lumbar drain was placed to relieve the pressure on the surgical site. This required bedrest and close monitoring of the leaking and spinal fluid output for it seems like about 10-12 days. I also had bad aspiration pneumonia requiring oxygen and antibiotics. I received different antibiotics for spinal fluid infection. Complication number 3 involved my voice. I couldn’t speak above a very breathy whisper. The ENT service discovered that my right vocal cord was paralyzed. After discussing options, a brief surgical procedure to inject collagen into the vocal cord to make it paralyzed at the midline so that the other vocal cord could meet it was performed. This was successful not only in giving me a voice, though somewhat hoarse sounding, but also stopping the aspiration. Yah! No more honey thick liquids for me!
So, after 3 weeks in the ICU, and all the complications, I would have the surgery again in a heartbeat! It was the best decision I could have made and I wish I had made it sooner. I still feel weak but am getting stronger every day. Swallowing is sometimes a little difficult, but no more aspiration. My voice is still hoarse, but I can speak and even sing. If my voice fades away, the vocal cord can be reinjected or a more permanent surgery can be done. It may take up to a year to have everything back to pre-GPN status but progress is being made. The best thing is that GPN is no longer in control. I’ve got my life back. It’s back to Louisville on Tuesday. GO CARDS!!!!