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Chiari diagnosis but spinal fluid not blocked
I have been diagnosed with a chiari according to my gp, but the ns stated that the spinal fluid is not being blocked, so no need to see me. I have had a headache for four months and my gp has decided to send me to a pain management dr....anyone else experienced this?
From my personal experiences thus far, having that Dx is pretty big in itself. Nevermind my debilitating headaches/migraines, severe joint pains from two years old, and a list that goes on and on, I cant get a Dx no matter what is clearly and obviously visible on my MRIs, because you know..Dr egos and all.
Do keep insisting for better treatment, or find a new Dr. It IS your RIGHT to see a different doctor, and continue doing so until you find someone who is taking you more seriously, as well as your Dx. (thats all I can do right now myself too) Or, see if your Dr will give you a referral to a REAL chiari specialist, not just any old neurosurgeon or neurologist who maybe sees a chiari patient one in a while. You need to see someone who has made their entire career about treating chiari patients and related conditions. You may also have other related conditions that you havent been Dx'ed with because often times a real specialist is going to be the only person likely to spot it or even be willing to look and consider some other conditions.
Dont let the Drs underplay you and your symptoms, if youre not happy with their plans, or dont feel comfortable with them and how theyre treating you then you always have the right to go to a different doctor, always.
Do keep insisting for better treatment, or find a new Dr. It IS your RIGHT to see a different doctor, and continue doing so until you find someone who is taking you more seriously, as well as your Dx. (thats all I can do right now myself too) Or, see if your Dr will give you a referral to a REAL chiari specialist, not just any old neurosurgeon or neurologist who maybe sees a chiari patient one in a while. You need to see someone who has made their entire career about treating chiari patients and related conditions. You may also have other related conditions that you havent been Dx'ed with because often times a real specialist is going to be the only person likely to spot it or even be willing to look and consider some other conditions.
Dont let the Drs underplay you and your symptoms, if youre not happy with their plans, or dont feel comfortable with them and how theyre treating you then you always have the right to go to a different doctor, always.
COMMUNITY LEADER
I know others that had the block for some it gave temporary relief and the Dr found they had to continue to explore other avenues.
Keep us posted
He wouldn't see me. He only went by radiology report. The headaches are a pain. Not to a specialist as far as I know.
COMMUNITY LEADER
Hi and welcome to the Chiari forum,
Yes, this is very common....but I must ask what tests were done for the NS to come to this conclusion?
And is this NS a specialist for Chiari and ALL related conditions....as it is possible to have Chiari but the symptoms of a related condition causing you pain.
Know you are not alone.
2 Comments
Yup! I was only about 4mm and the only symptom was a headache, so we spent months running further tests (polysomnography, hearing tests, etc) to determine if the chiari was messing with something else and testing painkillers with a neurologists. Even though all the tests turned out fine, the pain was unmanageable and we eventually turned to surgery.
Chiari headaches aren't easy to deal with, for the patient or the doctor, but they try not to take surgery lightly. Remember to be patient but vocal about your concerns and feelings. Best of wishes!
Chiari headaches aren't easy to deal with, for the patient or the doctor, but they try not to take surgery lightly. Remember to be patient but vocal about your concerns and feelings. Best of wishes!
They want to send me for a occipital nerve block.
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