severe headaches and unexplainable body pains

[tiredofpain766]

hi im a 46 yr old female diagnosed with brochial asthma (since 12 yrs old) ,bilateral avn in knees and right ankle (from prednisone use for bronchial asthma), chiari malformation type one, and carpal tunnel right hand ihave three children ages 23 16 and 6 all by c-section (plancenta previa) i have had several surgeries beginning with an appendectomy in 1997,  torn meniscus left knee (due to car accident in 2007) removal of gallbladder (due to severe stomach problems)2011 as of 2007 all my severe unexplainable problems began in 2000 after a fourteen day stay in hospital due to my bronchial asthma at a later date i was diagnosed with avn which i had to stay in wheelchair  crutches walker for several months at a time ive also used a cane several times for my avn while on prednisone i thought for yrs that my body pains including not being able to stand for long time, tripping, knee giving out on me,  not being able to open something as simple as a bag of chips, severe hand, back ,neck ,leg pains difficulty sleeping, going upstairs the pain is unexplainable but i thought it was all due to the avn but in 2011 i had a car accident on which drs ordered mris and concluded that i had chiari malformation which at that point the dr stated that the pains i was feeling was due to the chiari since then ive suffered from severe headaches blurred vision and neckpain ive just gotten worst living off of tylenol and advil everyday to many times a day so i decicded to see a neurologist to see how my chiari was and to get answers for theses headaches and motor problems he ordered an mri of my brain with and without contrast he called me to day and said that my chiari was still the same as in 2011 and that my  malformation was apparently from birth otherwise he said my brain looked good and that the question was what and how we would treat theses severe headaches he stated he thinks it is best he puts me on a medication called topamax one once a day for the first week and then two a day for second week and then he wanted me to see him again im totally confused i dont understand and have no answers of what i have he stated that there are no severe side effects and that i could still drive but i looked up this med and found other info so i have decided i will not take this med but dont know how to proceed from here i dont want to be in pain and not be able to enjoy my life with my children especially my six yr old who needs me im sorry for posting this so long but im trying to get answers or suggestions on this matter and how to proceed any info or idea would be highly appreciated thank you so much

[Resa181]

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.

[selmaS]

  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

[tiredofpain766]

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 .

[tiredofpain766]

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

[selmaS]

  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 : )

[SarahL2491]

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