Hello Fellow ST’rs. My name is Debra Summerlin. I just turned fifty years old and I have had ST since 1997. I wrote an article in the magazine about 3 years ago telling my story. I had never heard of torticollis until I was diagnosed in 1998 after having major neck surgery. Since then I have tried all the usual – botox, meds, etc. I went to Abby’s clinic, which is great, but due to the severe pain I was unable to keep up with the exercises. Then I started Brain Stem Chiropractic care in Atlanta. I was the one that spoke at the Biloxi Symposium. It was the only thing that had helped me but still I battled the pain. I believe it kept my neck from locking up. It helped it to at least be more flexible.
About 2 1/2 years ago I started having other symptoms that I was told did not have anything to do with ST. My throat became very raspy. I had a hard time swallowing. My whole left side was being affected, my hip as well as my left foot. I did not know what was happening to me. One night my husband was watching the news from Dothan, Alabama and saw a woman on the health beat that had severe torticollis. She was telling about this new procedure she had done and how she had gotten her life back. I couldn’t believe how normal she looked. She had deep brain stimulation surgery. Through a friend of a friend I got in touch with Joanne Webster. She lived about 2 1/2 hours from me so we went to visit. She made a call for me to her doctor at Tulane University in New Orleans. We went & talked to Dr. Richardson; he explained the procedure and also said that my other symptoms were also caused by ST. We were encouraged by the success they had with this surgery but I won’t lie, I was very scared. I had to do a lot of praying and asking the Lord for peace to do this. He is so good because he did that very thing. I was very calm and excited but I don’t want to give the impression that this is an easy road to go down but I felt I had done everything else humanly possible to treat this disease. I was desperate to find a better quality of life for myself – One with less pain and less symptoms. It is a process of adjustments by a trained technician that makes this work. She calls it taming the monster inside us. Ever feel that way? I sure did. It has been 19 months now. Do I still have symptoms? Yes, at times. Am I 100%? No, possibly 75-80% though. Remember, this is not a cure as you will still have ST but, hopefully with this, you will have a better quality of life. I still have to pace myself or it will act up. I go for treatments every 4-6 weeks but our goal is 3-4 times a year. I travel 7 hours but I know I am getting the best care possible for me. Please, if you do this, make sure you check out the physician and their technician before surgery. I am so thankful to be able to play with my grandchildren and not be in so much pain. Isn’t really all we want is just to be able to do everyday things without a constant game of tug-a-war going on inside of us?
I pray for the Lord’s guidance for you and may he richly bless you. You may contact me if you have any other questions. 1-229-246-6222 or firstname.lastname@example.org
I hope my article will give those interested in DBS a little bit of insight into this surgery. It is not for the faint of heart.
Living With Deep Brain Stimulation Surgery
In July of 2003, I made a decision that would change my life forever. I decided to have DBS surgery. I had tried everything else, for seven years, and nothing seemed to help me with the pain that ST can cause. It has been four years now and I can say it has been truly a roller coaster ride for me. My motivation was a better quality of life for me & my family as we all know ST affects everyone around us.
I had just entered the stage of grand-parenthood loving every moment. I wanted to be able to do things with my grandkids. Life is so short and they are such a joy. Even if I have a bad day, seeing them brings new life to me.
Before someone makes this decision they need to realize it takes a life long commitment. Deep Brain Stimulation surgery is not a cure for ST. It is merely a symptom control manager. At times it has been very frustrating. I am seven hours from my doctor. I was told after the surgery I would have to come back three to four times a year for adjustments. This has not worked for me. My schedule has been every six to eight weeks. Your body gets used to the adjustments so they have to be changed. It’s like tricking the ST. You have to go back or DBS will not work.
I am ineligible for disability and our medical insurance is a nightmare, which is very stressful. It has placed a huge financial burden on my husband as my caregiver but he never complains. He has been a God send to me and I am blessed to have a supportive family.
DBS can give a false sense of wellness. If you don’t learn to pace yourself ST will raise its ugly head again. In May of this year, I was walking with my husband and began to have a really bad headache. I went inside to check my system and to my surprise my batteries were dead. It took a week for me to get them replaced because my doctor was out of town. In that one week’s time I had regressed four years. I was as bad as I had ever been. The pain, the tremors, the pulling were unbelievable. I realized then that DBS has truly afforded me the privilege of that better life. With all of the ups and downs of the surgery I am better. My suggestion for anyone with the implant is to let your doctor, along with Medtronic, prorate your batteries so they will not run out.
As I am writing this letter, I am waiting in a hotel room for my next appointment. This is now a part of my life and will be, until I die. DBS makes life a little easier for ST patients, but, let me say again, it is not a cure and it has to be a commitment for life. God Bless each of my ST friends. If you have any more questions please call me.
My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews