Guest guest Posted April 14, 2012 Report Share Posted April 14, 2012 Hi Windy~ In a weird way welcome to the group! I'm sorry your getting the shock of a life time but it is almost as safe as open heart surgery'IF YOU GO WITH A NS THAT SPECIALISES IN CHIARI AND CHARI RELATED ISSUES *ONLY*! Especially since you have heart related issues, which MIGHT mean you have EDS-tissue disorder. The two conditions together can reak havoc on the simplest surgeries! So you'll be fine as long as you go with a NS that does just Chiari surgeries and knows about EDS with heart issues! I'm a TCI, NY patient, but I know their are a couple of other specialist groups in the US! I think the list is part of the group site. Their are a couple of us that have gone through the most of the available proceeders to limit the side effects of our defect. As a mother myself I know the fear in your heart right now! I'm a single mom of two, 2 and 5! Luckily I was single when I found out that I found out I had hydrocephalus, Chiari I, EDS, spinal leak. When I was told for the first time that I need brain surgery to live and it really wasn't MS like so many doctors thought! I traveled to the five top Chiari docs and I personally felt comfortable with the one in my own back yard here in NY. I don't know if it was the wealth of information Dr.B and Dr. Kula, taught me about my personal case in a way that I could understand. And by the time the doctors figured out I was or had, I was emotionally drained and stared to believe I might actually be going crazy and or addicted to pain meds I kept asking for. My quest for an answer to my crazy headaches, neck pain and double vision took about a year, of ifs and maybe and tons of testing! But, to answer some of your questions- Flying, yes, but SOME patients have issues if they have hydro, and go above 5 or 10 thousand feet. In altitude. But, find a TEAM you feel comfortable with for your surgeries and you might have to find a Nuro close to home to maintain your meds and or pain specialist. Like I said I'm very lucky to have TCI 30- 40 mins away from my house. Everyone their assisted in helping me having my dream of two wonderful babies in between surgeries! Sounds crazy but like I said having EDS can cause some interesting problems. As far as the other things YOU MIGHT HAVE. I personally believe that info needs to come your own doctor. But I wish you well and we're here for more questions.! We're a Chiari Family! Bea Sent from my iPhone On Apr 13, 2012, at 4:54 PM, " randwruiz@... " wrote: > Hi, > > My name is , i am 40 yrs old and have 3 young mids. I live in Santa Clarita, Ca. I was diagnosed yesterday with CM1. > > I went to the doctor 3 weeks ago with high blood pressure, horrible headaches and high resting heart rate. They sent me in for an MRI. My doctor immediately referred me to a neurosurgeon, who contacted me within a few minutes. Two weeks later I had an appointment. This was yesterday. > > I could use any information, as it is still very fresh in my mind, and scary. I am very emotional, but know that I will be okay. > > I have checked out a lot of sites, and blogs, but can aleays use more info. I would love to know more about the success rate or non success rate with the decompression surgery. Also, average recovery? I am flying in July before the surgery, is it okay to fly? > > Thank you, and looking forward to getting to know your group! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2012 Report Share Posted April 14, 2012 Thank you very much Bea, So far the doctor said that I don't have EDS, but I will look more into it. It is great advice to find a doctor who specializes in it. How long did you wait to have surgery? Have you had multiple surgeries? Glad it is a common surgery, pretty scared about the pain after. How do I find specialists in my area? Is there a directory or site? That would be very helpful. Thank you for everything! > Hi Windy~ > In a weird way welcome to the group! I'm sorry your getting the shock of a life time but it is almost as safe as open heart surgery'IF YOU GO WITH A NS THAT SPECIALISES IN CHIARI AND CHARI RELATED ISSUES *ONLY*! > Especially since you have heart related issues, which MIGHT mean you have EDS-tissue disorder. The two conditions together can reak havoc on the simplest surgeries! > So you'll be fine as long as you go with a NS that does just Chiari surgeries and knows about EDS with heart issues! > I'm a TCI, NY patient, but I know their are a couple of other specialist groups in the US! I think the list is part of the group site. > Their are a couple of us that have gone through the most of the available proceeders to limit the side effects of our defect. As a mother myself I know the fear in your heart right now! I'm a single mom of two, 2 and 5! Luckily I was single when I found out that I found out I had hydrocephalus, Chiari I, EDS, spinal leak. When I was told for the first time that I need brain surgery to live and it really wasn't MS like so many doctors thought! > I traveled to the five top Chiari docs and I personally felt comfortable with the one in my own back yard here in NY. > I don't know if it was the wealth of information Dr.B and Dr. Kula, taught me about my personal case in a way that I could understand. And by the time the doctors figured out I was or had, I was emotionally drained and stared to believe I might actually be going crazy and or addicted to pain meds I kept asking for. > My quest for an answer to my crazy headaches, neck pain and double vision took about a year, of ifs and maybe and tons of testing! > > But, to answer some of your questions- > Flying, yes, but SOME patients have issues if they have hydro, and go above 5 or 10 thousand feet. In altitude. > But, find a TEAM you feel comfortable with for your surgeries and you might have to find a Nuro close to home to maintain your meds and or pain specialist. Like I said I'm very lucky to have TCI 30- 40 mins away from my house. Everyone their assisted in helping me having my dream of two wonderful babies in between surgeries! Sounds crazy but like I said having EDS can cause some interesting problems. > As far as the other things YOU MIGHT HAVE. I personally believe that info needs to come your own doctor. > But I wish you well and we're here for more questions.! > We're a Chiari Family! > Bea > > > Sent from my iPhone > > On Apr 13, 2012, at 4:54 PM, " randwruiz@... " wrote: > > > Hi, > > > > My name is , i am 40 yrs old and have 3 young mids. I live in Santa Clarita, Ca. I was diagnosed yesterday with CM1. > > > > I went to the doctor 3 weeks ago with high blood pressure, horrible headaches and high resting heart rate. They sent me in for an MRI. My doctor immediately referred me to a neurosurgeon, who contacted me within a few minutes. Two weeks later I had an appointment. This was yesterday. > > > > I could use any information, as it is still very fresh in my mind, and scary. I am very emotional, but know that I will be okay. > > > > I have checked out a lot of sites, and blogs, but can aleays use more info. I would love to know more about the success rate or non success rate with the decompression surgery. Also, average recovery? I am flying in July before the surgery, is it okay to fly? > > > > Thank you, and looking forward to getting to know your group! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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