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Looking for help

I have just been diagnosed with chiari. I have been suffering from horrible headaches in severe pain in my neck and shoulders. I started having the tingling in my hands and feet ,shortness of breath and losing my balance. Dr did a emg (nerve study) and advised that I'm also suffering from nerve damage. Seen a neurosurgeon in which he told it was unrelated to chiari . I need help on getting the right person to help me.

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9432311 tn?1432825085
Welcome to a friendly and supportive place. I am sorry to hear about all the symptoms you are living with. It would be a good thing to go see a chiari specialist so that you can begin to go the right direction down the healthcare path. As Selma mentioned to you, on this forum, there is a list of chiari doctors that have treated other members. There is no endorsement or recommendation, it is a list that other members keep adding to when they like a doctor.

In the very beginning, right after i got my diagnosis, I thought I found a specialist in my own town. At my appointment he chuckled at me and told me that there was "nothing wrong with me." This was very discouraging - especially being in pain.  Know that your pain is real. Do not fall victim to a doctor who does not have knowledge and expertise with Chiari who may tell you that "nothing is wrong," or worse (as I have read from other posts) that your pain is a result of stress. Your pain is very real and is impacting your everyday life. Post back with any information that you find with your research. There is a list on this forum of surgeons that other members have gone to and felt comfortable with. Let us know what you find.

PS: To help you with any upcoming appointments (once you find a true chiari specialist whom you trust), try to keep an accurate journal of symptoms and what may have preceded them. Whenever I go to a doctor, it is always difficult to remember all the things I want to report. You have a lot going on. I wish you good luck. Keep posting about your progress.
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10169340 tn?1415846161
Hello there and welcome!!!! You do need to do a lot of research on finding a good doctor, someone who knows all about Chiari and the realted issues with it...I am just about 10 weeks post op with Chiari decompression and a spinal fusion of my c1&c2 ...it took me awile to find the rite doctor, after seeing about 6 other NS who all had diffent things to say, but now I am happy I did it, and a lot of your systems are like the ones I had .... Good luck  keep posting
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620923 tn?1452915648
COMMUNITY LEADER

Hi and welcome to the Chiari forum.

As you are finding out it is very important to find the right Dr in order to get the best help possible....and we do have a list of Drs for you to use to research them.....the list is not  referral nor an endorsement for those on it, but the list was compiled by members and are of Drs they have been to, treated by and liked....

It is possible the nerve damage is due to a related condition like Syringomyelia.....

Many of u do have nerve disturbances and it can be damage or just  a disturbance that may appear similar to nerve damage....

Educate yourself on ALL related conditions so you will know when you found the right Dr as they should be ruling them out b4 offering or suggesting surgery.

Know you are not alone <3
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