John Fonville's Botox experience at the Wake Forest Medical Center, Winston-Salem, NC
On Thursday, December 7, 2000 at 9:45 a.m., I had an appointment to see Dr. Jim Thompson, Dean of the Wake Forest Medical Center, in Winston-Salem, North Carolina. I made the appointment because of the sudden inability to clearly speak. After meeting with Dr. Thompson for about 10 minutes, he immediately referred me to Dr. Gregory Postma, the assistant professor of Otolaryngology at the Wake Forest Medical Center. After examining me by use of a laryngoscope, Dr. Postma told me that he had good news and bad news. The good news, he said, was that he knew exactly what I had, SD (Spasmodic Dysphonia). The bad news, he said, is that SD is incurable, neurological disease but could be treated with Botox shots.
Upon receiving this diagnosis, for obvious reasons, I was crushed. My life's work involves public speaking. Dr. Postma than scheduled an appointment later Thursday afternoon for me to see, Shannon, the speech pathologist who works with Drs. Postma and Koufman. Before seeing the speech pathologist, I h ad about a 3-1/2 break. So, I drove home with my wife and immediately went on the Internet to research SD to find out everything I could about my "incurable neurological disease." While researching on the Internet, I came across Dr. Cooper's web site that spoke of cures and recoveries from SD. Everything that he said was completely opposite of all that I had just been told hours earlier. I immediately became hopeful with this new information. Later Thursday afternoon, after returning to the Wake Forest Medical Center, I spent 1-1/2 hours with Shannon reading and talking into a computer program, after which she confirmed Dr. Postma's diagnosis. However, before my appointment with her began, I asked her about DVR and what I had found on the Internet. She told me that she had heard about some doctor in Los Angeles who has a website who claims he can cure people with SD. She also said that she has heard about him before from other patients. She also told me that no amount of voice therapy would ever help me with my condition. She told me that it was neurological and not physiological.
After confirming Dr. Postma's diagnosis, both Shannon and Dr. Postma recommended that I come in the next day for a Botox shot, Friday, December 8, 2000. I was very reluctant and the procedure seemed to be quite frightening. Dr. Postma assured me that it was a very simple procedure. He also said that he allowed interns to do the procedure on him before he allowed them to do it on the patients. So, with great reluctance, I decided to return to the Wake Forest Medical Center on Friday, December 8 at 10:00 a.m. to receive a Botox shot.
This is when I met with Dr. James Koufman, the doctor who administers the Botox shot and is considered one of the top SD specialists in the country. He examined me along with an ENT from London, England who was accompanying Dr. Koufman. Dr. Koufman told me that I had an incurable, neurological disease, called SD, that is similar to Parkinson's but it is not Parkinson's. He told me that somewhere in my brain, my brain is telling my vocal cords to spasm and thus there is nothing they can do for me except administer a Botox shot to temporarily paralyze my vocal cords so that they will move freely and not tighten up when I speak. Dr. Koufman told me that he did not know how much Botox I would need and that every patient is different. He told me some patients get .5 dose and others get 1-2. After meeting with me, he told me that because I am young, 6'3" and 220 lbs. and physically active, I would probably need a dose around 5. He said that this procedure was a guessing game and that after a few visits, he would be able to regulate my dosage. He also assured me that I would be breathy or hoarse for only about a week and then have a very strong voice for the Christmas holidays. However, I was breathy and hoarse for two months (December 9, 2000-ebruary 5, 2001). I never recovered a "strong voice" for the Christmas holidays and was never able to speak with a strong voice or clear voice at all.
After Dr. Koufman's examination and explanation of the Botox procedure, we then proceeded to the Botox department where I would wait in a lobby that was overflowing with patients waiting to receive treatment. In fact, it was so crowded, my wife and I could not even find a seat. Both assured me that the procedure would feel like a bee sting. However, when they told me to lie down on a cold, metal table and hang my head off one end, I began to get very nervous about what Dr. Koufman was preparing to do. He told me, as he held a large needle in front of me that he was going to permanently rearrange the muscles in my neck. This did not sound too pleasant but he assured me that I would be okay.
When Dr. Koufman began prodding my neck, it was much more painful than a bee sting. In fact, at that moment, I would have welcomed a bee sting. It hurt so bad I instinctively began yelling and asked him to stop. At first, he sharply addressed me and told me to be quiet. However, the pain was so bad, I could not. It felt like he was going to puncture my throat. I was choking from the needle going into my throat. Finally, after telling him repeatedly to stop, he quit and I tried to regain my composure. After about 10-15 agonizing minutes of this horrific procedure, he then administered the Botox shot. After receiving the shot, Dr. Koufman left, no one said anything to me and my wife and I just walked out of the hospital. After this first Botox experience, my throat and neck hurt so bad, I could not even look up into the sky for a week. It felt like a prizefighter had punched me in the Adam's apple.
Two days alter, on Sunday, December 10, 2000 approximately around 10:00 p.m., I was lying in bed about to fall asleep and without warning I began having severe problems swallowing and breathing. I literally though I was dying. I ran downstairs to my office to get all the literature Drs. Postma and Koufman had given to me regarding Botox to see if this was a normal reaction. I read everything I could while still experiencing breathing and swallowing difficulties. I could find nothing and so I went back upstairs and after about 45 minutes, I finally was able to fall asleep. The next morning, my wife called Dr. Koufman's office (because by now I had lost my ability to talk from the Botox shot). I went to Dr. Koufman's office on Monday, December 11, 2001 out of great concern about what I had experienced the night before. He examined me and assured me that I was okay and that my voice would be back strong in about a week. It never came back at all.
After my less than successful experience with Dr. Koufman, I decided to investigate further the work and claims of Dr. Cooper. After trading several e-mails with Dr. Cooper and corresponding several times with Bryan Foxley, a patient of Dr. Cooper, I decided to fly out to Los Angeles for several weeks of intensive DVR with Dr. Cooper. Dr. Cooper's method was preferable for many reasons. One, he claimed he could cure SD and he provided living, before and after, proof through his patients. Also, he does not use any invasive procedures that cause physical pain. Lastly, he offers hope and provides for patients who are needlessly suffering from SD.