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Hi all,
There are more useful threads about Chiari 1, but I would like to bring to the surface my relevant story. Who knows, I may help somebody.
I have been suffering with vertigo during my early years 16-19. When I was 21 a non-stop headache started and I became almost invalid from incredible pain. Headaches came together with extreme fatigue and a total break down of my immune system. Acupuncture offered me 4 years of complete relief since then ( I found a really good practitioner). And here am I now in my 29s. Bedridden with constant pain. I dont know how I do it. Acu does not work any more. I think I have damaged some nerves.
I have seen 13 neurologists and only the last pointed out that I have Chiari 1. The rest sent my to the psych to find my inner self.
Chiari 1 means a herniation of the tonsils of the brain down in the spine which may cause problems in the circulation of the celebrospinal fluid. The symptoms seem to be similar to those of CFS including headaches, numbness, cognitive problems, balance problems, vertigos....
So yes I have a herniation of 7mm that does not cause however any disruption of the circulation of my celebrospinal fluid since my scull leaves space for it.
I did a lumbar puncture too (it hurts) and my cranial pressure was ok. However, the neurosyrgeon I saw (and apparently he is really good) said that even if the MRI does not show it, the brain may get swollen during the night, the circulation of my fluid may stop and cause all these problems.
So he proposed surgery which I will not do because there is no absolute proof that Chiari 1 causes it. I do not have the typical Chiari 1 headaches which start in the back of the head and go forward. My neck or shoulders do not ache and I am not in pain when i laugh or caugh. I know that surgery will not fix my mess. I do not see good impressions from patients after surgeries.
I am on Efexor and Xanax now and I pray to God to get better. Because I can be 95 per cent healthy if I decide to get lazy in my life.
Topiramate and Amfitriptiline killed me. Lyrica offered very modest relief from nerve pain in my head.
So seems Chiari 1 is found in a tiny blind spot that brain MRIs may do not detect, while MRIs of spine show it wonderfully.
And yes, I lost 13 years while I could know about it and be happier and healthier now. Because all my odd symptoms, including headache when I bend, these crazy vertigos and headaches maybe literally come from my mind and not from psych problems.
Conclusion...
Do an MRI of your upper part of your spine next to the MRI of your brain!!!! And of course ignore your doctor if he says you dont need to!
May love save us all.
Victoria
There are more useful threads about Chiari 1, but I would like to bring to the surface my relevant story. Who knows, I may help somebody.
I have been suffering with vertigo during my early years 16-19. When I was 21 a non-stop headache started and I became almost invalid from incredible pain. Headaches came together with extreme fatigue and a total break down of my immune system. Acupuncture offered me 4 years of complete relief since then ( I found a really good practitioner). And here am I now in my 29s. Bedridden with constant pain. I dont know how I do it. Acu does not work any more. I think I have damaged some nerves.
I have seen 13 neurologists and only the last pointed out that I have Chiari 1. The rest sent my to the psych to find my inner self.
Chiari 1 means a herniation of the tonsils of the brain down in the spine which may cause problems in the circulation of the celebrospinal fluid. The symptoms seem to be similar to those of CFS including headaches, numbness, cognitive problems, balance problems, vertigos....
So yes I have a herniation of 7mm that does not cause however any disruption of the circulation of my celebrospinal fluid since my scull leaves space for it.
I did a lumbar puncture too (it hurts) and my cranial pressure was ok. However, the neurosyrgeon I saw (and apparently he is really good) said that even if the MRI does not show it, the brain may get swollen during the night, the circulation of my fluid may stop and cause all these problems.
So he proposed surgery which I will not do because there is no absolute proof that Chiari 1 causes it. I do not have the typical Chiari 1 headaches which start in the back of the head and go forward. My neck or shoulders do not ache and I am not in pain when i laugh or caugh. I know that surgery will not fix my mess. I do not see good impressions from patients after surgeries.
I am on Efexor and Xanax now and I pray to God to get better. Because I can be 95 per cent healthy if I decide to get lazy in my life.
Topiramate and Amfitriptiline killed me. Lyrica offered very modest relief from nerve pain in my head.
So seems Chiari 1 is found in a tiny blind spot that brain MRIs may do not detect, while MRIs of spine show it wonderfully.
And yes, I lost 13 years while I could know about it and be happier and healthier now. Because all my odd symptoms, including headache when I bend, these crazy vertigos and headaches maybe literally come from my mind and not from psych problems.
Conclusion...
Do an MRI of your upper part of your spine next to the MRI of your brain!!!! And of course ignore your doctor if he says you dont need to!
May love save us all.
Victoria
