First, let me apologize for the English / Writing lesson that some writer felt compelled to give you. We Chiarians, when suffering, can be somewhat a picky bunch that should remember and support our fellow sufferers. I have been diagnosed formerly with Chiari I since 9/2005 after suffering thru several years of mis-diagnosis. Plain migraines, nerves, even drug seeking...only my family Dr. kept trying to help me because he knew when my BP shot up to 180/110 that I was not faking, and he kept helping me find a neuro Dr. that could help me here in KY.
It could be such a thing that you have more than one thing wrong with you...but the MRI does not lie...if it showed Chiari, then you have Chiari and the Chiari does produce a myriad of symptoms. Go on the internet and read everything you can find about Chiari.
I have had 2 Chiari decompressions, 9/2005 with a small brain cyst or tumor because of the brain rubbing the back of my skull and the latest in 8/2012 with a titanium support placed at the back of my brain due to "brain sag". I have severe migraines almost daily, muscle aches, balance problems, night blindness, insomnia, hot/cold sensitive, severe depression, nausea, numbness & tingling in hands and feet, severe headpain if I lift, cough, yell, sing, sneeze and allodynia which means that the hair on my head hurts when my head hurts and certain smells will drive me into a headache/nausea immediately. I cant even do my own housework...but hey, I am alive...praise the Lord...He must have work for me to do.
I take the max dose of Topamax that the dr. is comfortable giving me and it is a godsend!.....Please find a good Neurologist and a good NeuroSurgeon who KNOWS about Chiari. Because Chiari is a condition that just keeps on giving...symptoms, I mean...but if you have good medical support and pain management then you have a fighting chance.
I can attest to the rudeness of the staff at most places and that one is very rude....but it may be helpful to look online at the forms, fill them out and make copies of ur MRI's and send it in...this is the only way u get past the staff and get an appointment ALL must submit these forms.
http://www.chiariinstitute.com/appointments.html
thank you so much i am going to try for the second time to get into the chiari malformation institute unfortunately the first time i tried to make an appt the staff on the phone was very rude and it is very difficult to get an appointment but for my health i will keep trying again thank you for your explanations it helps alot i hope you the best on your journey .
thank you for taking time to write but let me clarify i didn't know which forum this was since i wasn't looking for a specific one and secondly i didn't know this sites main point was to be grammatically correct i thought it was a site to help people sorry for the error thanks again
Hi and welcome to the Chiari forum.
Instead of just taking pain meds, u will want to get a CINE MRI to see if u have a CSF obstruction....even tho ur herniation is the same length u still need to know how it is affecting u and if u have ne related conditions like syringomyelia, tethered cord, disk issues, ICP, POTS, ehlers-danlos,.....
Not all NS's and NL's are experienced with Chiari and the related conditions....
Topamax is a typical med for those of us with Chiari, I was on it and it can cause some side effects the first few weeks until u adjust to it....it may be worth a try, but know the first 2 weeks u will be out of it.
Since u r in Queens u may want to go to Great Neck, there are Chiari specialists there....
And always get copies of ur MRI's and the reports....if u do not have the current ones, contact the facility that did ur latest studies....and going forward get copies of ALL testing.
Use the list of Drs so u can research Drs, but u r close to some of the best...so u do not have that far to go....but do consult a few that are familiar with Chiari.
Chiari is life altering, surgery is not a cure, so first find out how ur Chiari is affecting ur overall Health...and let a Dr that is well informed guide u.
Know that u r not alone : )
Other than having a difficult time reading your post, due to no breaks (it needs paragraph breaks, as many of us have difficulty reading long lines.
I think perhaps you have posted on a MS patient to patient forum in error. I tried to send you a msg but your page does not accept them.
Hope this helps and am sorry you are in such pain. I hope it gets better