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Brain & Nervous System Disorders Message Board

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Hello everyone,

I am new to this board I am searching for answers to questions about Chiaris.

I have a Chiari it is about 5 to 6 1/2 mm. I have had 4 different measurements but these 2 are the closest. lol

1st I would like to thank cindy for her information on a specialist. I am considering getting in touch with TCI although it is quite a distance away.

I am having a range of weird symptoms and would like some input from everyone if they are Chiari related. I should also mention that I have a thyroid problem (hypo) on synthroid for 18 years and I have a cavernoma in my spinal cord which is why I am confused on symptoms because some of them could be caused by the cavernoma. I am seeing a neurologist and have gotten second opinions by 2 neurosurgeons, one of which is Dr. Spetzler in AZ. I sent my info to him. They were willing to do the chiari surgery if I wanted but not the cavernoma as that is too risky. They highly suggested waiting a year to see what both would do as they can not say if Chiari is causing them for sure.

My symptoms:
blurry vision right eye mostly,

head pressure in the back of my head very rarely a migraine just a couple of times a month but really bad pressure feeling (hard to explain)

Neck tightness (just terrible) all the time lots of trigger point problems, have been going for weekly massages but just not helping

numbness and burning tongue. very strange feeling.

muscle spasms all over different places not painful just annoying

Fullness in right ear, sounds like there is water in there all the time.

Ears ringiing

Just recently nasal problems, lots of post nasal drip, swollen passages

Off balance a bit, feels like I am in lala land

Right shoulder blade pain( just terrible too), have had this for 4 years spent a ton of money on anything and everything I could to get the pain to go away. This is how my chiari and cavernoma was found with testing for this.

Now my right leg is giving me problems, pain, pins and needles etc. comes and goes.

I am also experiancing shortness of breath can't seem to take a deep breath this has been going on a while now and sometimes i think it is in my head but could be causing some of my dizziness.

My neurological tests have come back fine. I have had all sorts of testing, Mri's Q flow study came back good so csf flow is ok. Are these typical symptoms of Chiari? also can everyone pipe in and tell me what meds they are on for pain and to help with symptoms. I would really appreciate any feedback. I am in the Buffalo Ny area so if anyone knows of a good neuro guy near here I would love to find someone close by to do followups with.

thank you for your time and sorry for the lengthy post

hi Dawn...& everyone!:wave:

The muscle spasms was one of my worst sx:confused:I also heard about magnesium helping with that,but it didn't work for me.I really think the change in my hormone balance threw everything off.My new GP backs me up on that!

Here is a list of all my sx....most of them are gone now.

severe muscle weakness
parathesis(pins'n needles in feet/hands)
shortness of breath
sore,red,glossy tongue
decreased appetite
off balance,trouble walking
loss of fine touch(couldn't even count change without my fingers/hands
cramping up)
MRI in 1999 showed mild cerebellar atrophy(modified after B12 therapy)
dizziness(also occasional vertigo)
Lhermitte's sign(electric-like shocks down neck through whole body)
Positive Romberg's sign(increased unsteadiness on feet when eyes are
tinnitus(ringing in ears)
urinary incontinence
vision disturbances(simple sensory seizures)
taste impairment
impaired pain/touch perception
impaired vibration,position sense
muscle fasiculations and spasms in ankles,calves,feet,back
unable to tolerate heat(made sx worse)
unable to tolerate cold
sinus pain(more than usual)
fluid retention(swollen legs)
low blood pressure
irregular heartbeat(slight mitro valve prolapse)
severe pain in spinal cord

Well that's about all of them....what a laundry list of sx!!!!

Yes B12 levels can change.....within a short amount of weeks!It blows my mind to think how one little B12 vitamin was responsible for all those sx!!!!So the university neuro was wasn't from the chiari after all..........something to definitely think about.:angel:

Dawn do any of your sx seem similar to the ones I had?Thanks for sharing so much about your health issues....I never heard of a cavernoma,but I am very interested in researching that one.:)

Have lovely day everyone~


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