I am looking for some answers. I was diagnosed with Chiari Malformation after I had an MRI for swelling and pain to my neck. I have had joint pain,radiating pain & weakness to my extremities and chronic fatigue for 12 yrs. Sinus like headaches began about a year ago and had become more frequent. My eyes have always been sensitive to bright lights, but now it is so much worse.
In the past month my pain from the neck is radiating up the left side of my skull to my cheek and I often experience a severe pain in my left eye. I am dizzy most of the day and have left ear fullness. I have hazy vision after watching TV for a short while or using the
computer. Also neck tightness and confusion at times. Went to neurosurgeon and he stated that my symptoms are not Chiari related. They are not the classic symptoms like pain when I yawn, sneeze, or cough. He said the headaches with Chiari only come when that happens and not randomly like I am having. I need to know if he is correct, that the symptoms that I have are not Chiari related. Thank you in advance for any input!
I don't think that is correct. I had awful headaches that WERE NOT always caused by coughing or sneezing. Your smptoms definitely sound like Chiari symptoms. I would try to get a second opinion. Maybe with a Chiari specialist or at least with a NS that understand Chiari. Where are you from?
I can only tell you that I had all the symptoms you are and more. I didn't have unmanagable headaches. My NL at first didn't think my chiari 8mm was big enough to cause my symtoms. When he couldn't find anything else, he told me to see about the chiari. I went to Dr Oro and had surgery in Sept. My symptoms are almost all gone now. Why do I feel so much better after surgery and the symptoms are gone if Chiari wasn't the cause.
Lori is right. There are other conditions that need to be rules out such as Lymes Disease and MS. My NL put me through a lot of testing before they came to the conclussion that it was the Chiari causing my symptoms. Hopefully you can get some answers soon.
lori said:
hi
most of the symptoms you are explaining sure sound chiari related to me
the sinus type problem i have not heard of / that do not mean a thing / that i have not heard of it / it very well may be a symptom
as nicolee said there is a symptom list posted
since the surgeon di not think it was chiari related did he happen to tell you what was causing all these issues
i am just throwing this out there/ have you ever been tested for lyme disease/ lyme can have many of the same symptoms as chiari
i had lyme and was treated for 3 mths with 2 different anti biotics and the joint pain went away but all the other symptoms stayed and worsened
what is your next step/ would you consider seeking another surgical opinion
I have been tested for MS, lyme disease and most autoimmune diseases. Everything came back negative. It is so upsetting that I am having these symptoms and the doctor's don't know why. I keep waking up with these headaches that radiate from the bottom of my skull to my left eye. The pain can be so severe at times that I don't know what to do. Also I am so sensitive to bright lights and the sun. I can't go anywhere without wearing sunglasses or I get another severe headache.
Hey Momof4, The headaches your having sound alot like mine and I have Chiari and a syrinx. My headaches always start out as neck pain and the pain shoots up to the whole right side of my head. The neck pain I can handle but once the head pain starts I'm done for the day or days depending how long it lasts.