Guest guest Posted February 19, 2012 Report Share Posted February 19, 2012 I have had headaches some times for days and or weeks at a time. This has gone on for over 35 years of my 41 year life. My mother suffered from headaches from the time I could remember until the time that she passed away at the age of 50 from an enlarged aortic root which turned into an aneurism. I went to a major area clinic a year ago and they did a MRI. They said that there was no visible herniation of the brainstem or the " tonsils " . Therefore there is no possibility of Chiari Malformation. Case Closed. No recommendations on how to deal with the daily migraines. This last week, my Primary care physician sent me back there saying " on paper this woman has 95% of the symptoms of Chiari " From the Chiari One websites symptom list of the aprox 63 symptoms listed, I have 52 of them. Dr A got really concerned when I told him that if I laid with my head on one side and then flipped over, I could hear fluid gurgling to the other side of my head. And that the pressure from the side I was laying on would change to the side I had changed to. And that I have " ice pick stabbing pain " in different parts of my head. So I see a different Doctor at the same clinic as a year ago, this past week, and he wants an MRA done, and for me to go to a 3 week pain Clinic. But he immeadiately put his foot down and said " you don't have Chiari " He never read the letter of referral from my physician outlining all of my issues with and with out a headache. The only thing this doc picked out of the letter was that during the worst part of my headaches I have clear fluid dripping from my nose if I tip my head forward. Or out my ear if I sleep on my side for more than 30 minutes. He said I have a " dura leak " I am so angry and frustrated at this point. I didn't even bother mentioning that my top 2 cervical vertebra never stay in place and if I can get them adjusted during a headache it makes the headache better. Jenna in MN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2012 Report Share Posted February 19, 2012 Jenna~ Sounds like Hydrocephalus to me! Do you feel better if you throw up? Ask your doctor's about that! Bea Sent from my iPhone > > > I have had headaches some times for days and or weeks at a time. This has > gone on for over 35 years of my 41 year life. My mother suffered from > headaches from the time I could remember until the time that she passed away > at the age of 50 from an enlarged aortic root which turned into an aneurism. > > I went to a major area clinic a year ago and they did a MRI. They said that > there was no visible herniation of the brainstem or the " tonsils " . > Therefore there is no possibility of Chiari Malformation. Case Closed. No > recommendations on how to deal with the daily migraines. > > This last week, my Primary care physician sent me back there saying " on > paper this woman has 95% of the symptoms of Chiari " From the Chiari One > websites symptom list of the aprox 63 symptoms listed, I have 52 of them. > Dr A got really concerned when I told him that if I laid with my head on > one side and then flipped over, I could hear fluid gurgling to the other > side of my head. And that the pressure from the side I was laying on would > change to the side I had changed to. And that I have " ice pick stabbing > pain " in different parts of my head. > > So I see a different Doctor at the same clinic as a year ago, this past > week, and he wants an MRA done, and for me to go to a 3 week pain Clinic. > But he immeadiately put his foot down and said " you don't have Chiari " He > never read the letter of referral from my physician outlining all of my > issues with and with out a headache. The only thing this doc picked out of > the letter was that during the worst part of my headaches I have clear fluid > dripping from my nose if I tip my head forward. Or out my ear if I sleep on > my side for more than 30 minutes. He said I have a " dura leak " > > I am so angry and frustrated at this point. I didn't even bother mentioning > that my top 2 cervical vertebra never stay in place and if I can get them > adjusted during a headache it makes the headache better. > > Jenna in MN > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 I think your doctors just see Chiari I from the old perspective, this is: You have Chiari when you have a tonsil herniation of .5 cm., but you can have Chiari 0, this is, there is no herniation of your tonsils but your bones are comprising your brain steam and cerebelum, this kind of definition is not known by many NS or Nls, you have to go to a Chiari expert one that really knows about Chiari. I have all the same symptoms you have but I have Chiari 0. So you have to look another doctor. Mexico. De: Yung Fecha: Sun, 19 Feb 2012 16:45:47 -0500 Para: jenna CC: " < > " < > Asunto: Re: So frustrated!!! Jenna~ Sounds like Hydrocephalus to me! Do you feel better if you throw up? Ask your doctor's about that! Bea Sent from my iPhone On Feb 19, 2012, at 2:19 PM, " jenna " <titus2wife@... <mailto:titus2wife%40q.com> > wrote: > > > I have had headaches some times for days and or weeks at a time. This has > gone on for over 35 years of my 41 year life. My mother suffered from > headaches from the time I could remember until the time that she passed away > at the age of 50 from an enlarged aortic root which turned into an aneurism. > > I went to a major area clinic a year ago and they did a MRI. They said that > there was no visible herniation of the brainstem or the " tonsils " . > Therefore there is no possibility of Chiari Malformation. Case Closed. No > recommendations on how to deal with the daily migraines. > > This last week, my Primary care physician sent me back there saying " on > paper this woman has 95% of the symptoms of Chiari " From the Chiari One > websites symptom list of the aprox 63 symptoms listed, I have 52 of them. > Dr A got really concerned when I told him that if I laid with my head on > one side and then flipped over, I could hear fluid gurgling to the other > side of my head. And that the pressure from the side I was laying on would > change to the side I had changed to. And that I have " ice pick stabbing > pain " in different parts of my head. > > So I see a different Doctor at the same clinic as a year ago, this past > week, and he wants an MRA done, and for me to go to a 3 week pain Clinic. > But he immeadiately put his foot down and said " you don't have Chiari " He > never read the letter of referral from my physician outlining all of my > issues with and with out a headache. The only thing this doc picked out of > the letter was that during the worst part of my headaches I have clear fluid > dripping from my nose if I tip my head forward. Or out my ear if I sleep on > my side for more than 30 minutes. He said I have a " dura leak " > > I am so angry and frustrated at this point. I didn't even bother mentioning > that my top 2 cervical vertebra never stay in place and if I can get them > adjusted during a headache it makes the headache better. > > Jenna in MN > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 I totally understand what you're going through. I went through the same ordeal. Look up Neursurgeons and start calling around. I'd call and ask if they were willing to diagnose and treat " minimal " chiari. I got a whole lot of NO's before one said yes. All in my area said no. I had to travel to see the one who ended up diagnosing me. But because of all the other docs I'd been to I was nervous to drive out there and not get any results so I sent him my current MRI's along with, I think the charge was, 50 dollars. He read them and sent me back his report and findings. I would just check around real good. You can't go to just anybody. I was told emphatically that I did NOT have chiari. Now, 3 years post decompression and nearly symptom free! Hope you find the right doctor. Blessings, Cortney Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 Have you ever heard of craniocervical instability? C1/C2 instability, Ehlers Danlos Syndrome? These conditions can accompany Chiari or be present w/o a " true " Chiari and cause same symptoms. > > > > I have had headaches some times for days and or weeks at a time. This has > gone on for over 35 years of my 41 year life. My mother suffered from > headaches from the time I could remember until the time that she passed away > at the age of 50 from an enlarged aortic root which turned into an aneurism. > > > > I went to a major area clinic a year ago and they did a MRI. They said that > there was no visible herniation of the brainstem or the " tonsils " . > Therefore there is no possibility of Chiari Malformation. Case Closed. No > recommendations on how to deal with the daily migraines. > > > > This last week, my Primary care physician sent me back there saying " on > paper this woman has 95% of the symptoms of Chiari " From the Chiari One > websites symptom list of the aprox 63 symptoms listed, I have 52 of them. > Dr A got really concerned when I told him that if I laid with my head on > one side and then flipped over, I could hear fluid gurgling to the other > side of my head. And that the pressure from the side I was laying on would > change to the side I had changed to. And that I have " ice pick stabbing > pain " in different parts of my head. > > > > So I see a different Doctor at the same clinic as a year ago, this past > week, and he wants an MRA done, and for me to go to a 3 week pain Clinic. > But he immeadiately put his foot down and said " you don't have Chiari " He > never read the letter of referral from my physician outlining all of my > issues with and with out a headache. The only thing this doc picked out of > the letter was that during the worst part of my headaches I have clear fluid > dripping from my nose if I tip my head forward. Or out my ear if I sleep on > my side for more than 30 minutes. He said I have a " dura leak " > > > > I am so angry and frustrated at this point. I didn't even bother mentioning > that my top 2 cervical vertebra never stay in place and if I can get them > adjusted during a headache it makes the headache better. > > > > Jenna in MN > > > > Quote Link to comment Share on other sites More sharing options...
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