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Help a newly diagnosed chiari sufferer
Hi guys. So I've been diagnosed with chairi a few months. My neurologist said this was an 'incidental' finding and not related to any symptoms I have. I have researched and pretty much could have wrote the book on chiari on me! I have been to my gp and convinced him enough that he has gave me medication to help with pins and needles/tingling but does admit that he has never heard of it before. He has gave me nothing for pain as i dont really feel he belives I'm in any pain.I don't feel I am really getting enough help/support. Any help you guys could give me would be appreciated. I've gone on with these symptoms severely for about 4 yrs now and got one doctor who listened and has now moved.
My general and surgeon and TMJ doc were of A LOT more help and concern than neurologist and surgeon.
Ive not experienced daily pain in almost 13 years (now 53). I've never felt better. Acid free diet, walking, minimize stress (I've REALLY limited seeing family that stresses me out), get treated for TMJ (this was MAJOR for me!), weight lift, start with trainer or physical therapist with degree & medical courses (they're out there!) that understand conditions. I DO NOT do any pain meds, except for ibuprofen around PMS time. I pray a lot. :D I'm also back to mountain bike riding (low and medium trails and hills of course). Who'd of thought?!?! I'm at 9cm, have had large cyst removed lower spine, have degenerative spine, cervicals 3-6 fractured, damaged stomach, esophageal, on and on .... due to docs ignoring symptoms. This could of been prevented (DO an acid free acid, also helps with your joints).
Wellness habits and working out (esp for males, they typically don't suffer as much ... I believe its due to their bigger and stronger bone structure).
Its horrible discomfort (I awoke with a short (4 hrs) episode today). I feel for those in pain, I can recall how bad it used to be for me and how much quality of life I lost for all the years of being misdiagnosed and medical plan & Tucson docs rejecting me a script for CT or MRI. In US, even if you have cash, you cannot get and MRT or Scan if you do not have a script.
Ive not experienced daily pain in almost 13 years (now 53). I've never felt better. Acid free diet, walking, minimize stress (I've REALLY limited seeing family that stresses me out), get treated for TMJ (this was MAJOR for me!), weight lift, start with trainer or physical therapist with degree & medical courses (they're out there!) that understand conditions. I DO NOT do any pain meds, except for ibuprofen around PMS time. I pray a lot. :D I'm also back to mountain bike riding (low and medium trails and hills of course). Who'd of thought?!?! I'm at 9cm, have had large cyst removed lower spine, have degenerative spine, cervicals 3-6 fractured, damaged stomach, esophageal, on and on .... due to docs ignoring symptoms. This could of been prevented (DO an acid free acid, also helps with your joints).
Wellness habits and working out (esp for males, they typically don't suffer as much ... I believe its due to their bigger and stronger bone structure).
Its horrible discomfort (I awoke with a short (4 hrs) episode today). I feel for those in pain, I can recall how bad it used to be for me and how much quality of life I lost for all the years of being misdiagnosed and medical plan & Tucson docs rejecting me a script for CT or MRI. In US, even if you have cash, you cannot get and MRT or Scan if you do not have a script.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Sorry I was not able to answer you sooner.....I was with a family member who was in the hospital.....
There is an organization for those in the UK to help locate a Chiari specialist....it is the Ann Conroy Trust.....if you need a link....http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS-UK/show/1503569
Also I wanted to mention that many Drs consider a Chiari finding as incidential...unless they are a Chairi specialist; May I ask what testing have you had so far....MRI's of what area's.....Brain, cervical spine, thoracic and lumbar spine, a CINE MRI?
Sorry I was not able to answer you sooner.....I was with a family member who was in the hospital.....
There is an organization for those in the UK to help locate a Chiari specialist....it is the Ann Conroy Trust.....if you need a link....http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS-UK/show/1503569
Also I wanted to mention that many Drs consider a Chiari finding as incidential...unless they are a Chairi specialist; May I ask what testing have you had so far....MRI's of what area's.....Brain, cervical spine, thoracic and lumbar spine, a CINE MRI?
3 Comments
Hi thank you for replying. I hope you family member is ok. I had a brain and thoratic and lumbar spine mri. Thank you I will speak to the Ann Conroy trust and see if I can get some help. It is so frustrating when you are getting dismissed constantly and receiving no help for pain.
Thank you, she is doing better, she is a Downs Syndrome adult entering dementia and was dehydrated due to her refusing to eat and drink, she is now in a rehab facility and I am back home....
Make sure they also check you for Ehlers-Danlos Syndrome as it can affect the post op outcome should you be deemed a surgical candidate.
Make sure they also check you for Ehlers-Danlos Syndrome as it can affect the post op outcome should you be deemed a surgical candidate.
In so glad to hear she is doing better!! I will thank you. You have been a great help
Hi Bernie,
I would strongly suggest you see a Chiari specialist ASAP to see what they think. Not every neurologist is familiar with this condition and it is often dismissed (mine was dismissed by 7 different neurons over the course of 8 years). What state do you live in? Selma helps by listing Chiari specialists by state I'm sure she will see this soon and be happy to respond! She is a Godsend!
I would strongly suggest you see a Chiari specialist ASAP to see what they think. Not every neurologist is familiar with this condition and it is often dismissed (mine was dismissed by 7 different neurons over the course of 8 years). What state do you live in? Selma helps by listing Chiari specialists by state I'm sure she will see this soon and be happy to respond! She is a Godsend!
1 Comments
I'm actually in the UK and I have been researching this and and cant seem to get anywhere. I'm not sure where to turn. Thank you for your reply
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