HELP-PLEASE READ MY STORY and provide feedback, I want to get better and get back to my life!

[bmforem07]

For the past year and 1 month, I have been seeking help for problems with lightheadedness and fatigue, accompanied by pressure headaches in the back right of my head, which make their way up to my face and right eye. In addition, a muffled feeling in my right ear has also been present.  I have so far been to 3 neurologists, 3 ENT's, 1 neuropsychologist (to rule out depression/anxiety/prob.'s with medications), 3 eye doctors, 2 general practitioners, 2 orthopedic specialists (for neck trouble), and an orofacial/TMJ specialist. For an otherwise EXTREMELY healthy 21 year old, you can see how much trouble I have gone to to find this out. I have had an unnatural amount of tests done within the past year, done a lot of therapy, and taken many medications for months at a time but nothing has worked thus far.  About 6 months ago, I notices a small, pea-sized lump on the back right side of my neck/head at my hairline which I thought was a cyst, goiter, or in-grown hair.  I went to my athletic trainer and team doctor to have it removed but they were unsuccessful as it would not pop or rupture. I haven't thought anything of it until now, as I have ruled out many more possible conditions that could be causing my problems. I am going to have it examined tomorrow. I am a college student, 21 years old, an athlete/scholarship football player (And yes yes before you ask I have had 2 MRIs and 2 CT scans on my head and neck to see if it is related to football-IT IS NOT, as well as 2-3 months of therapy on my head and neck muscles for stingers to see if that is what it is as well). I am ready to have this problem diagnosed and move on to get with my life. Not a day has gone by in the past year where I feel like I am walking around in a FOG of lightheadedness/dizziness/spacey feeling with my right ear having pressure throbs, my right eye being dry, and feeling fatigued.  For an extremely active 21 year old all conference college athlete, you could see how frustrating and debilitating this actually is. If there is anyone, a Medical Professional or someone experiencing the same thing, who can help PLEASE let me know what to do. If not, share this with your family and friends or whomever in hopes that I can get my life back to where it was! Thank you in advance.

[littlec4life]

I also have this symptoms and I have a Chiari Malformation.  My Neurologist had done a couple of brain MRI s of my brain over the years but only read the reports that stated everything was normal he NEVER actually looked at the films until I went in with tingling in my hands and feet and I made a huge scene that I was not just stressed.  He looked at the film and the films from years before and sure enough I had the chiari all along and it had gotten bigger.  The radiologists never stated this abnormality in their report.  Makes me wonder how some radiologists and doctors got their degrees.  I went to Boston Massachusettes to Dr. Popp who specializes in this and he is now ordering a Cine MRI to see how the CSF is flowing through my head. Remember no matter how frustrated you get that things could be alot worse.  My neighbor is on his death bed with weeks to live with a brain tumor(cancer) so I will try to deal and be thankful its not a death sentence.  Keep your chin up and don't give up at getting your life back.  Only you can control your health and be rude if you feel strongly that something is wrong.  No one walks in your shoes every day.  Take care and I wish you the best.

[selmaS]

No there is no cure, surgery helps slow progression and restores CSF flow...and many times we feel much better after surgery....

Not sure what feeling "normal" is......but we can feel better as I said b4....

As for starting with out warning...it is possible that u coughed too hard...fell, or were in a MVA  that could trigger dormant symptoms...so have u had an injury or fall?

And do u have MRI'S to verify what is going on?

"selma"

[bmforem07]

Is there a cure? Can you get back to feeling normal? I'm 21 and have spent about 5k on finding out what the hell is wrong with me. I want to be sure that this could be it and why it would all of sudden start without warning

[selmaS]

Hi and welcome to the Chiari forum.

I have to agree with GS that ur symptoms r similar to those of someone with chiari..and it is not odd to be told ur brain MRI is "normal" as many of us r...too many drs  feel it is an incidental finding and should not cause the issue we indeed have...then they go the rt of anxiety and depression and it's all in ur head...guess what, it is....

U deff want to get copies of all ur MRI's and reports and get another opinion....and going forward always get copies of all tests and reports to make a second opinion easier.

Good luck and do keep us posted on what u find out.

"selma"

[Givenstrength]

I'm sorry to hear what you are going through but my opinion... Sounds like my symptoms and I have chiari!
Was chiari malformation never mentioned in your MRI reports? Sounds to me like you need to go to a chiari specialist or atleast bring it up to your neurologist to see if maybe it was missed? Good luck to you and I pray you find the right answers and can get on the road of better days!