Well Worth the Wait
Enjoyed talking to you the other day. We will try to bring you up-to-date with Anne’s journey with dystonia.
My journey started 20 years ago in 1995 when I was 60 years young. My head started jerking to the left and up or back. I started to get some eye twitching and mouth movements. Our local doctor sent us to a neurologist in Springfield, MO. They tried to do an MRI but I had too much movement to have the MRI. They suspected the movement was from dystonia. From there we were sent to WU (Barnes) in St. Louis. The dystonia diagnosis was confirmed. They used botox but after 6 months I became resistant to it. I tried myobloc but it didn’t work. During this time 8 different medications were tried. The side effects of some were worse that the dystonia. All of this took place between 1995 and 2001. In 2001 DBS was being used for Parkinson disease. In February, 2002 I was the 3rd patient for DBS with dystonia that Dr Richardson at Tulane in New Orleans had operated on. The probes were misplaced in the brain which caused the neuro stimulator to be set at too high of voltage which in turn caused the batteries to run down in 6 to 8 months. The settings only helped my movement a little bit. This was between 2002 and 2005. In 2005 hurricane Katrina hit New Orleans and we had to change doctors. Medtronic referred us to Dr. Diamond in Fayetteville, AR. Dr. Diamond referred us to Dr. Okun at the University of Florida in Gainesville, FL. After going to the University of Florida for testing, Dr. Okun and his staff found that the leads on both sides were incorrectly placed. Dr. Ohun recommended that I have another DBS operation to correct the problem. In September of 2006 Dr. Foote and Dr. Okun performed another DBS operation and they were able to do both sides during the one operation. This operation took only 6 hours while the first took 12 hours. November of 2007, after 3 adjustments in Florida, they hit the right setting. I have had the same setting since then with no head, eye or mouth movement. My speech is a little slurred and I don’t have much volume. We are tolf this is because the muscles that are stimulated are close to the voice box. This is very minor compared to the dystonia movements. Since the operation in 2006 the batteries have been replaced 3 times in 2009, 2012 and 2015.
The benefits from the DBS surgery have been super and we would encourage anyone who has run out of options to consider the DBS surgery. The quality of life has been greatly improved.
It has been a long journey since 1995. I could not have gone through this without the support of my husband and the prayers of our church family, I thank God everyday for His healing. As you always say, Howard, YOU ARE NOT ALONE and laugh a lot. I hope this isn’t too long and thanks for listening.
Through all of Anne’s trials and temptations she has remained steadfast in her faith in God and has kept a good outlook on life. She has taken good care of me and continued with her tasks of life with no exceptions. Our family and friends have supported her however possible. Since November of 2007 her DBS setting has been great; she has had no involuntary movements. People who don’t know her have no idea what she has been through the past 20 years.
After Katrina hit New Orleans and we went to Dr. Diamond he needed the settings that the technician, Miriam, made at Tulane. We called Miriam and she went down to the hospital in downtown New Orleans. The city was without electricity so the elevators didn’t work. The doctor’s office was on the 7th floor. Miriam had to go up 7 flights of stairs and back down to get the information for Dr Diamond. This has nothing to do with the operation itself but it is an interesting side note of the helpfulness of the staff workers.
Hopefully this will be of help to anyone who is at their rope – tie a big knot and hang on. We found out about DBS at a symposium in San Antonio I think it was 2000, pretty new at that time. There is help. Just keep looking.
Thanks again for listening – Anne’s husband of 45 years. YEAH.
I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand