The question I most often ask myself is if I would rather have no use of my hand or my foot. Now that my left foot has been curled in for four days, I have realized how much easier it is to have no hand.
Although when my hand was curled in, I was uncomfortable and aggrivated. I hated not being able to do my hair, cut my food, do my daughters hair, get her dressed, change her diaper. It was all a struggle but after three and a half years I learned to adapt and learned to do all of these things with one hand and one curled in hand. That was my normal and when I got my hand back, it was great but it was also weird. I basically had to re learn how to do everything. My fingers still ache and its still hard to do things but im getting back into the swing of having two hands and it feels great.
I felt very positive about the DBS, it changed my life. I am so grateful for my doctors and so happy that I had the opportunity to have this surgery and make my life better for myself and for my family. I truly believe it was the right choice and in the end (which may take some time) I will be symptom free and be back to "normal". I just would like to be able to go a full day with no spasms and no pain, which rarely happens but it was getting better.
Last week I started having a lot of problems with my left foot. I would get spasms in it regularly but after some time it would relax. I saw my neurologist and he said he didnt want to change my DBS settings because he was so pleased with my hand and because the dystonia could move into my stomach muscles which would not be good for the baby. That scared me a bit and made me realize I dont want to do anything that could harm my baby boy and I will be in a wheelchair before I do that. On Thursday, my foot got stuck again. I went to physical therapy and they massaged it, put heat on it and really tried to get it to relax for about 45 minutes. It was very painful and never relaxed. They wanted me to get botox injections in my leg and when it relaxed to put a brace on it to keep it straight. After talking to my neurologist, we realized botox is not an option during pregnancy. He suggested valium but my OB said I cannot take that either. So, today my foot is still stuck. It is getting more and more painful and hurts all the way up my leg to my hip. Im not sure how long I can deal with it. I dont know what to do. I am going back to physical therapy tomorrow so we will see what they have to say. My biggest problem is I cant find any shoes that are comfortable. My flip flops hurt and fall off and my sneakers hurt so bad because my foot is constantly pushing against the side of the shoe. The only thing comfortable is my slippers, which I obviously cant wear in public. So my mission this week is to find that perfect shoe.
I am trying to stay positive and keep my head up for Hailey and Cody but its so hard. Im trying everything for my foot that doesnt involve any kind of medicine because I dont want to hurt him. I hope it will get better soon and I can get back to my life and start planning for baby Cody to be here.
I am so excited to meet my little boy and Hailey is always kissing my belly saying "i love you" to him. Its so cute. I think they are going to be the best of friends and I cant wait to see them together. <3 p="p">
Although when my hand was curled in, I was uncomfortable and aggrivated. I hated not being able to do my hair, cut my food, do my daughters hair, get her dressed, change her diaper. It was all a struggle but after three and a half years I learned to adapt and learned to do all of these things with one hand and one curled in hand. That was my normal and when I got my hand back, it was great but it was also weird. I basically had to re learn how to do everything. My fingers still ache and its still hard to do things but im getting back into the swing of having two hands and it feels great.
I felt very positive about the DBS, it changed my life. I am so grateful for my doctors and so happy that I had the opportunity to have this surgery and make my life better for myself and for my family. I truly believe it was the right choice and in the end (which may take some time) I will be symptom free and be back to "normal". I just would like to be able to go a full day with no spasms and no pain, which rarely happens but it was getting better.
Last week I started having a lot of problems with my left foot. I would get spasms in it regularly but after some time it would relax. I saw my neurologist and he said he didnt want to change my DBS settings because he was so pleased with my hand and because the dystonia could move into my stomach muscles which would not be good for the baby. That scared me a bit and made me realize I dont want to do anything that could harm my baby boy and I will be in a wheelchair before I do that. On Thursday, my foot got stuck again. I went to physical therapy and they massaged it, put heat on it and really tried to get it to relax for about 45 minutes. It was very painful and never relaxed. They wanted me to get botox injections in my leg and when it relaxed to put a brace on it to keep it straight. After talking to my neurologist, we realized botox is not an option during pregnancy. He suggested valium but my OB said I cannot take that either. So, today my foot is still stuck. It is getting more and more painful and hurts all the way up my leg to my hip. Im not sure how long I can deal with it. I dont know what to do. I am going back to physical therapy tomorrow so we will see what they have to say. My biggest problem is I cant find any shoes that are comfortable. My flip flops hurt and fall off and my sneakers hurt so bad because my foot is constantly pushing against the side of the shoe. The only thing comfortable is my slippers, which I obviously cant wear in public. So my mission this week is to find that perfect shoe.
I am trying to stay positive and keep my head up for Hailey and Cody but its so hard. Im trying everything for my foot that doesnt involve any kind of medicine because I dont want to hurt him. I hope it will get better soon and I can get back to my life and start planning for baby Cody to be here.
I am so excited to meet my little boy and Hailey is always kissing my belly saying "i love you" to him. Its so cute. I think they are going to be the best of friends and I cant wait to see them together. <3 p="p">
I know a woman who has had two succesful pregnancies with dystonia and received botox injections during them. She is an attorney who graduated from Notre Dame. I trust her advice 100%. While no neurologist or OBGYN will gaurantee its safety, Botox does not enter the bloodstream (think about it, if it did, it would be deadly). Therefore, it has virtually no chance of harming an unborn child. So you might want to get another opinion on the Botox if you think it will help. Oral medications to treat dystonia are pretty much out of the question, though. In terms of Benzos, Valium is the least harmful, Klonopin the most. Likewise, artane is considered safer than baclofen in terms of pregnancy. It all has to do with categories. You might want to do some internet research on "Drug caterories and pregnancy."
ReplyDeleteBack to dystonia. I've had to choose between my rt. neck/rt. arm, and my foot in terms of DBS settings. As a distance runner, this was extremely difficult, but since I do not make a living as a runner, I had to choose setting conducive to alleviating the spasm in my neck, right arm and hand. I cannot concentrate or swallow if the settings only help my foot. Even though my foot is cramped up, I have to consider the alternative... not being able to think straight, concentrate, handwrite or sit at a computer.
I had my surgery in 2008, and for over a year it was bliss. I was one of the lucy people who had doctors nail the settings right away. I hardly even needed medication. The on July 4th, 2010, while watching fireworks with my fiance and family, my feet started acting up. What was even worse was that my wedding was less than 3 months away! Anyway, it's all been downhill since 2010, and I will be having my batteries changed for the first time in a few months. While I'm a half-glass-full kinda person, I don't know how much DBS is helping me anymore.... but I do believe SOMETHING will help. One cool thing I learned is that my batteries are totally old school. I do no have the option to make adjustments myself, but my new batteries will allow me the capability to change my own settings within certain paramaters. Somethignt o look forward to!
Good luck!
~Nicole