Ten years and I can distinctly remember the year my life stopped when Spasmodic Torticollis turned my life literally upside down. I was on top of the world feeling beautiful, outgoing, confident and so content with my life. My husband, Ray, and I were so happy raising two beautiful daughters. We lived a military lifestyle that was full of eventful experiences.
What happened one may ask to change all this? Torture is what I like to call it. I was a prisoner in my own body. My head twisted for no apparent reason. The burning in the neck and shoulders became unbearable. I was a rag doll in the hands of an enemy. And he must have hated me to hurt me this badly. I lost control of my neck, head and all facial movements. As I looked in the mirror to watch what was happening to my body, I was in shock with what I was looking at. Twitching in the face, head quickly pulling to the left shoulder and back again caused my voice to change. This movement never let up. I was only thirty-nine years old in my prime, so I thought.
Every three minutes the enemy attacked. Yes, I timed the minutes of distress. I asked my husband to hold my head to see if he could stop this from happening. He was not strong enough to fight the pull. At this time there was no consolation. I would never look normal again. I was ugly, angry, frightened and depressed and the thought of losing my mind scared me to death. I was no longer Pam Garritano. Finding a comfortable position to rest was even impossible. I became irritable with my husband and sometimes my daughters made me snap. I became frightened and hated life. I just wanted to die quickly. I can still remember my husband working so hard to help me by taking the girls out so my mind could be still. The sound of them giggling and playing around me like normal kids absolutely made me think I was headed for the straight jacket. I begged my husband if I needed to be institutionalized, please don’t let them electric shock me. “Promise me that!” I begged him.
Doctors at the time were of little or no help to me. They were quick to throw pain pills and muscle relaxants at me that didn’t help. They said this was all psychosomatic. I spent seven months searching for help. Finally, a Chinese doctor asked if I suffer from Tourette’s and referred me to his movement disorder doctor. There was a God! This doctor knew exactly what I was suffering from. He told me about a new procedure called botox injections and he introduced me to a young doctor who works for him at Shand’s hospital. We met and he explained this disorder to me and was very interested in my case. When I felt comfortable, he started the injections.
I was on anti-depressant and Klonopin which, in a week, changed my personality to someone less bitter. After finding out I was not losing my mind, I could relax again and trust this doctor. I had a long haul to repairing the damage that was tormenting me. However, with the help of medical doctors running tests and ruling other possibilities out, I was finally getting better. My husband was seeing improvements. The woman he married was coming back to fight and not giving up. The toughest thing I had to do was watch my husband go on deployment for six months against doctors’ wishes. I needed to be strong for all of us and this gave me something to strive for. With Ray being around, I was leaning and depending on him. My depression was under control and I felt that I needed to fight this fight alone and not lose to this disorder. As Ray left us behind, his face showed concern. However, this was my wish. As I kissed him goodbye I whispered, “When you get back, I’ll be better.” That was the best decision I made even though it was a tough battle. I was able to lead a somewhat normal life though my neck will never be normal. I found my faith in God once again and started thinking positive. My neck hurt like hell but I was not going to let this beat me. There have been many obstacles and I am still fighting them. I have come from rock bottom to coming back gracefully. I want to thank my husband, Ray, for all his support and love. He has been my rock for almost 25 years. God bless!
Hello to all of us ST’rs. My name is Pamela Garritano. I sure you all remember me. Howard asked me to write an article on life after Deep Brain Stimulation and for awhile I really had to think about what I was going to say. My story has not been a success story but rather disappointing in many ways because I did not get the results that I had hoped for; in turn I got the opposite. Everything seemed to be going well the first three months. I was out of pain and off of a lot of my pain killers which was great.
However, there was one thing that I still did not have and that was full control of holding my head up all by itself meaning I was still very reliant on my hand pushing on my face to hold the head up. That to me was not what I had DBS for. I became very frustrated with the programming, the two hour trip twice a month the first four months and then once a month because there was no change and I felt the doctor was just keeping me on a string to come back for the next setting. You all know me. I am a fighter and all through my first year I disagreed with my doctor about one thing and that was the selective denervation that I had done several years before the DBS. He seemed to be blaming that surgery for the neck not wanting to come up. That made me even more upset because he knew about that surgery before he even agreed to doing the DBS on me. So, naturally, I got defensive. People did not let me forget that I had this surgery done either. I didn’t get any breaks, everybody asking why they could not see any improvement. That was even more frustrating for me. Still all the stares that we all have to go through. Not easy after going through such a major surgery. Then to top it off I went to my yearly doctor appointment to hear these words. “Well, it looks as if you are a non responder – We could do two things. Keep the stimulation working and maybe in another year it will get better with the stimulation or we can do surgery again”. I have always told myself I could not put myself through that again. Just thinking about the drilling and the scraping and all that pressure to make the hole. Then the recovery time. That pain was too much to remember. I said to my doctor I want a second opinion. He said “ok, who with?” There was no hesitation with my answer and that was Dr. Erwin Montgomery up at The University of Wisconsin. He said I know him and I will get him all the work we have done here and talk to him about your situation. Great! Dr. Okun was not mad at me and, if he was, I really did not care. After all I wanted to be normal once again in my life. It has been thirteen years that I have suffered and I was not going to quit there. My head position was just like it was when I first started, hanging down off to the left and turned side ways.
I called Dr Montgomery and asked him for an appointment and he said sure, he would look at me and give me his honest opinion. So my husband and I made our reservation at the airline and hotel and also made the appointment for three days so Dr. Montgomery could give me the proper evaluation that needed to be done. My insurance and family doctor worked hard with me to get me all the right authorization. I am thankful for them also. We meet the day of my appointment. He had talked with Dr. Okun earlier and had an idea of where to go from there. Dr. Montgomery evaluated me and said I had a lot of pulling towards my chest with my head. I don’t think your selective denervation has made a difference because I still had so much of a pull down and my chin was tight. He said “this it what we’re going to do. We need to get a head scan and they can’t get you in today, but they could do me first thing in the morning. So let’s let my programmer play with your settings today and we’ll get the head scan tomorrow so we can see the placements of the leads”…I agreed to let her try and play with my leads just to see if she could hit that happy spot I needed.. My husband and I were there all day letting her test me. She was wonderful with me. After the whole day of her working on me I simply could not take anymore. My head felt like mush and I capsuled a lot on my left side. I thanked her for trying so hard but my head could not take anymore. I said just leave me turned off as it’s night time and I am going back to the hotel and sleep this off. Plus I knew the next morning I was the first appointment for my head scan. I went in that morning for the scan and we waited for the results. Dr. Montgomery was not surprised my lead placement was a little off. Each lead was lying in kind of a slanted position and he felt that could be the problem. He and his programmer talked about how they wanted to set me and they came up with a bi polar setting using the middle contact of the two leads and to see how that would work. This was the closest way he could get contact to make the leads respond. He said he wanted Dr. Okun to set me his way for three months and if that did not work then surgery would be my next step.
My husband and I felt really happy with what he had found and felt much better knowing what was coming in my future once again. However, there was some resentment because I didn’t understand why Dr. Okun couldn’t have told me this. Why did he not order a new head scan to see if the leads were placed right. Both my husband and I were furious, all the trust I put into Dr. Okun, I felt he let me down or just did not know what to do for me. Back in Dr. Okun’s office my husband and I were both upset but we told ourselves not to take it out on him. When he walked in the room I lost it and said why did I have to go all the way to Wisconsin to find out my leads were not placed in the optimal spot. His reaction was he did a scan right after surgery. I said, “No why did you not order a new one, this would given me the confidence I needed in you.” He said, “I am sorry you feel this way, Pam.” I said, “I don’t think you understand the frustration and stress I am feeling.” Again he apologized and said lets work on Dr. Montgomery’s setting for three months and if that doesn’t help we will put another lead in. I left his office feeling betrayed because of so much trust I had put into him. Dr. Montgomery had a lot of confidence in Dr. Okun and he assured me he was a good Doctor and Dr. Foote was a good surgeon and that he felt I should let Dr. Okun and Dr. Foote perform the surgery once again. I was not sure about this at that particular time. In three months the settings did not help and I knew I had to put myself through it one more time . No, despite my anger I knew what I had to do. That was to trust my doctors once again and give them permission to go in one more time.
Dr. Okun assured me that he was talking back and forth with Montgomery and a couple of other doctors who had experience with a patient that was a hard case just like me. They made a figure of my head and all these doctors worked together on where to set the third lead. Dr. Okun was always pretty sure of himself and I needed to believe in him once again. We made up as patient and doctor four months earlier and worked together and my fate was now in his hands once again.
The day of my third surgery all doctors were upbeat and very excited to see me and by letting me know I was in good hands I knew it would be all right. Now it was time to put the ring on my head once again. Dr. Foote was the first person I saw that morning. Are you ready to get this over with? My husband looked into my eyes as I sat there looking at the head gear. He new what I was feeling and there was nothing he could for me. Dr. Foote said, “Pam we made the ring small for your head so they would not have to mess with me too much.” His nurse, Pam, got behind me and said, “I will help you Pam, ok.” I said ok and she said, “When I say take a deep breath in and let it out you do so.” She got behind my ear and said “Breathe”. I did. He put the first numbing shot in and it did not hurt as much as it did the second or the third time before. The head gear was on and over with and did not even hurt. Thank you I said. See you in surgery.
I went in that morning with a positive attitude. The doctors were happy and trying to get me excited. Dr. Okun came in and said, “Pam, I have great faith in this surgery. It’s going to work.” Both doctors did their jobs and it was like I was in a dream. Everything went so smoothly and I was done in no time. What a relief to me. Dr. Okun said, “Pam, we’re done”. The spot he entered he got a great reading on and he felt really good about this surgery. While Dr. Foote was putting in my new battery and adding my new stimulator on the left chest, Dr. Okun went out to my husband and said, “I think we are in the sweet spot. Now I know we are where we need to be this time”.
So now I have three leads and two Stimulators in Place. Four weeks later I went in for my first setting. Dr. Okun knew exactly what he wanted to put my first setting at. He did and two days later my head was up in the air. I was excited about this because this was the best response I had received in the whole time the old leads were put in. Now remember we added a new lead as they thought the third lead would be good for me if they could get it in without interfering with the second one that was in there. I must say I will never regret doing this surgery again. I am out of frustration once again; I am able to look up just by pulling my head up. Not using my hand at all .What a surprise to me, only two months of adjustments and I feel like a normal person once again. This time I did a trick and that was tucking my hand that I used to use to hold my face up in between my legs. I needed to break that thirteen year addiction and work the head all on its own.
I was very proud to walk into his office for my second appointment. It was really special that all who worked in the neuro department could see the difference in me. Now to show Dr. Okun and when he saw Ray and me he was so happy to see my head up in the air. He gave me a big hug, shook my husband’s hand and said if anybody deserves this it is Pam Garritano. I feel blessed and although it’s not over yet because this has just begun for me it’s still the best gift a doctor could give a patient along with the help from our precious Lord.
I would like to close with these words. This is a hard surgery but if you have it bad enough I would tell you to go ahead with this surgery. First, find a good doctor and then proceed with the surgery. It may just change your life. Just like it has for me and it took a third surgery for me to make it work. Never give up on your journey. If you are feeling something talk to your doctor, you are in charge of your own health care. Don’t be afraid to call on another doctor if you feel you’re not being helped correctly. All I know is the depression is gone, the head is straight up and I feel great. I am not ashamed of my looks anymore.
I want to give a great big thank you to three doctors in my life. Dr. Okun, thanks for putting up with my fighting, Dr. Foote, who does the surgery with a lot of help from Dr. Okun (they both contribute all to make this surgery a success) and Dr. Montgomery for the expertise on this surgery and giving me the courage to go through it once again. This time it was a success story and everybody can see a big difference in me. I am a walking wire machine now, three leads and two stimulators in my chest. I don’t play in lightning storms anymore Ha Ha .
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