screaminghelix
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Hello all! My name is Jeff. I recently had a VNS device put in. About 3 weeks ago. I wanted to start a journal of my ongoing progress. I am having quite many side effects, so I just wanted to give as much info as possible. I feel those that are considering the options need to be made aware of problems or benefit I receive from it. Through all of this my intent is not to deter anyone from the possibility of having one implanted. For some the device is a dream, for others it can be a nightmare. So far I am on the negative side. Here we go.
Feb 3) My Dr was going through all possible medication and could not stop or lessen my seizures, so he gave me the option for the VNS. I watched the videos and read the paperwork. Hey seizures in both hemispheres of my brain, why not. My wife was not thrilled, but reluctantly went along with it.
Got to the hospital, filled out the book of paperwork, put on the ever so lovely hospital attire and were ready to go. The Dr and nurse came in, gave me the rundown, off I went to surgery.
When I woke up, zero voice. Dr came in told me that this is a common side effect and it will subside. Out of the hospital I go.
It has been 3 weeks, my voice is still gone, headaches, difficult to breath and insomnia. During this period I decided to do some more research and found that what I was told in the hospital was more or less the half truth. My voice may never come back. It is a common side effect that your vocal cord becomes paralyzed permantly. When you are the father of five, that is not good news. My wife telling me "I told you so." was a wonderful addition. lol
I continued my research and found that the implant may cause sleep apnea, and there have been numerous deaths associated with the implant. Most of the deaths were attributed to unknown death and most of those people died in their sleep. There is a story of a man who had one and it malfunctioned causing his heart to stop and he would come back every 30 sec because the device would stop and his heart would start again. Fantastic! Yea, I am a little scared. Then I read about a mom who had her daughter die in her sleep. Not cool.
With all that in mind we called both Dr's and told them to take it out and leave me on meds. I was met with great resistance. Neither Dr want to remove it. Why not? Its that I am not used to it, all of this will go away. Called them both back and got this, "You may need to wear an oxygen mask to sleep." Um, no. I cannot even attempt to talk without losing my breath. This thing is not even turned on yet! Next week it gets activated. As I wait, I am very concerned. My family had to worry about seizures, now death. My wife is now scared to sleep in case something were to happen at night. I'm not going to panic quite yet, or should I say, not going to panic much. I will keep you posted. Jeff
Feb 3) My Dr was going through all possible medication and could not stop or lessen my seizures, so he gave me the option for the VNS. I watched the videos and read the paperwork. Hey seizures in both hemispheres of my brain, why not. My wife was not thrilled, but reluctantly went along with it.
Got to the hospital, filled out the book of paperwork, put on the ever so lovely hospital attire and were ready to go. The Dr and nurse came in, gave me the rundown, off I went to surgery.
When I woke up, zero voice. Dr came in told me that this is a common side effect and it will subside. Out of the hospital I go.
It has been 3 weeks, my voice is still gone, headaches, difficult to breath and insomnia. During this period I decided to do some more research and found that what I was told in the hospital was more or less the half truth. My voice may never come back. It is a common side effect that your vocal cord becomes paralyzed permantly. When you are the father of five, that is not good news. My wife telling me "I told you so." was a wonderful addition. lol
I continued my research and found that the implant may cause sleep apnea, and there have been numerous deaths associated with the implant. Most of the deaths were attributed to unknown death and most of those people died in their sleep. There is a story of a man who had one and it malfunctioned causing his heart to stop and he would come back every 30 sec because the device would stop and his heart would start again. Fantastic! Yea, I am a little scared. Then I read about a mom who had her daughter die in her sleep. Not cool.
With all that in mind we called both Dr's and told them to take it out and leave me on meds. I was met with great resistance. Neither Dr want to remove it. Why not? Its that I am not used to it, all of this will go away. Called them both back and got this, "You may need to wear an oxygen mask to sleep." Um, no. I cannot even attempt to talk without losing my breath. This thing is not even turned on yet! Next week it gets activated. As I wait, I am very concerned. My family had to worry about seizures, now death. My wife is now scared to sleep in case something were to happen at night. I'm not going to panic quite yet, or should I say, not going to panic much. I will keep you posted. Jeff