Thinking i have Chiari but not sure

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Hello,

I have been doing research for awhile now about Chiari as many of m symptoms point to it. I have SEVER head pain constantly that never goes away numbness in the face tingling in the hands and feet. sometimes the pain is so bad i can't even lift my head at all. My vision can beome blurry and sometimes i even loose sight in my right eye for a bit from there being so much pressure. There is ALWAYS pressure. Sometimes it feels like my face is being stabbed with an ice pick or burned with a blow torch as well. I am always dizzy and nautious 99% of the time. I have trouble swallowing food and to many more things to list at the moment. I first started expieriencing symptoms 2 years ago.  Had an ER Dr say he noticed something that looked like Chiari Malformation type 1 on my MRI but to bring it up to the nurologist that i was going to see in 2 weeks and see what he said. A few days later my PCP Mentioned Chiari Aswell. Went to the Nuroloist and he said its just a migrain. I have had migrains before and this type of pain/pressure feels very different. Ive never had a migrane last for 2 years. I just wanted other input and to feel like im not loosing my mind. I am in the prosses of getting a new nurologist.

Thank you.

TB 

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7 Replies

  • Posted

    Hello surferkid. I'm so sorry to hear of your illness. I hope you get a good neurologist, I've seen two and they were both ignorant of my symptoms which are pointing to Chiari and I'm still looking for a diagnosis still. I don't have EDS but have fallen on black ice 3 years ago and found out the damage only recently that I acquired an abnormal clivo-axial angle, 3mm tonsillar descent, substantially thinned left alar ligament, thinned transverse ligaments, and odontoid peg offcentre, which is the cause of instability in the ccj area, but I believe its similar to instability caused by EDS. Please read all the commemts on this forum there are some promising links to Chiari specialists. Rest assured Chiari headache is not a migraine headache.
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    • Posted

      Thank you so much for you response

      I am so sorry to hear what you are going through aswell. I hope you get diagnosed soon. It definantly feels very different than migraine headach, i am just tired of being told thats what is. However I will not stop fighting for answerssmileI am so glad i joined this sight

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  • Posted

    Keep pushing for answers, it took 7yrs before I was diagnosed with chiari, and that was picked up by my spine specialist, if he hadn't diagnosed it I can't imagine what mess I would be now! Hope you get it confirmed as then you know what your facing, and if it's definitely not chiari that's good too, in a way. But you definitely need answers and not passed back and forward. Good luck. X
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    • Posted

      helen11122 you are right. I will not stop pushing.Im starting to thing that this dr is not a right fit for me. At my next appointment I am going to get copies of all ct and mri scans and then take those with all copies of blood work and go get a second opinion.

      Thanks for your kind words

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  • Posted

    Hi there, I am sorry to hear of your suffering, bes thing to do is to write to your doctor and your neurologit to get the copy of the result of your MTI and ask your doc tor to get second opinion, if you are in the UK, explain it again to your gp wha you think (from the scan/MRI they can tell if that is chiari) then it is up tp the health care professonals and your self whether thitat can be managed or to no option but have to hqve operation, I was the one that refused operation, I managed for 2 years tomorrow, to suffer for that trauma and ending up given up and accepting my condition and referring to 3 NS until meeting the right one to have surgery which is due this monday..(WHICH I REALLY DREADFUL) but this site has helped me a lots in encouraging me to be positive and taking this decision..so..if you are not sure if you live in the UK the Ann Conroy Trust organisation is very good to have a chat to..they have few people there you can call and have aq chat with them..if you live in us..there are also lots all FB association where there are lots of help where (depend where you llive they meet up as well) so, I hope this help you?  but be assertive to your helath care profeswsionals they do not know how you feel unless you let them know..they have so many patients to see, unless you are emphasizing that you really sufferinbg a lot, they will not know...not that they are careless..so you are incharge of your own health..and this is chiari..is not hyper tension or diabetes ..?  Good Luck
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    • Posted

      Thanks for the advice.I called my nurologist and was very assertive and now I have an appointment in 2 weeks. I will be getting all copies on CT scans and MRI's Then. I have been tested for eything  else like diabetes and itll checked out but it never huto check again so I w doing that just to make sure. I am constantly telling my nuro how i feel and all of my symptoms its like he doesnt hear me. I have been doing evrything he says taking all of my meds and vitamins and eating healthy and drinking of plenty of water to control my "migraines" as he says and no relive or improvement what so ever in a year. I am remaing hopeful though As well as sending positive thoughts your way.
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    • Posted

      Good for you surferkid1518. Never give up and don't let anyone try to belittle your illness. You know your own body. I hope that the specialist now taks this on board and pursues your illness through the right channels. Xx
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