Chiari Diagnosis from CSF Leak ?

[bean418]

Hello....Has anyone been diagnosed with Chiari Malformation as the result of a spontaneous CSF leak ?

If so, can you please provide some information on your situation/symptoms.

It's been 3.5 years and finally dx as this is the problem.  My CSF fluid no longer leaks from my nose however after review of my medical records this is the theory they are going with.

Small spontaneous CSF leak which more than likely herniated the cerebellar tonsils to 3-4mm.  Could be right, could be wrong at this point, I suppose.  Could have been born with it, could have acquired it.  So many questions and never any answers with this being the most reasonable thus far. Would be great if I had an MRI prior to the neck trauma.

Crazy symptoms with inconclusive test results.  
Blood is always great....pcp says I look great on paper but knows otherwise
Tilt Table Study - not positive but symptoms suggestive of Orthostatic Hypotension
Irregular Heart Beat - short PR syndrome...(extra electrical pathway) PALPITATIONS
Low Blood Pressure
Visual Disturbances with black spots occuring
Shakiness
Bilateral Weakness in legs
Bilateral Weakness in arms
Migraines
Neck Pain
Fatigue - Major
Weakness and Fatigue upon Exertion
Gastroparesis
Blurry Vision
Sensitivity to Light - Severe
Heat Intolerance - No hot showers and No outside time in the summer heat :-(
Difficulty Breathing...originally dx with asthma....cardiologist gave me pulmonary function test NEGATIVE results
Acid Reflux - but then again, everyone is dx with this anymore.


Did cervical/thoracic facet injections and they eliminated migraines, dizziness, light sensitivity, blurry vision.  Still kept weakness and fatigue.  3 weeks later symptoms eliminated are back but this was to be expected as they were done as a diagnostic measure only

[bean418]

Should be interesting to get further testing approved !  We will see what comes of this....if the NS ever graces me with a phone call.  

The referring NS office manager called me today and asked when my appt. was....I was like hmmmmmm no idea, have never received one.  She was not a happy camper and was going to have her NS call this other one, lol.  It can't ever be easy.  It's been over a month and can't even get the call to schedule is a bit ridiculous but who am I.  

I know there is some insurance stuff going on but honestly know nothing regarding in depth details.  The news is so depressing anymore that I don't even watch it.  I will just stay in the dark with current events.  Kinda like staying in the dark with my health care, LOL....(that was a good one for sure)  When I lose my sense of humor I am gonna be doomed !

So basically if we lose work insurance would that make me eligible for medicare/medicaid....then I can get accepted into Dr. Fraser Hendersons office....  :-)    JK

[selmaS]

  Yes, it is all over the news...ACA is starting and ALL INS comps must meet the new GOV standard...many with individual private plans (not thru a job) were dropped first...over 5 million are without INS and must use the GOV site to sign up but the site is not secure or working properly....it is all a mess.

They claim those with INS thru work may begin to lose INS come Jan....so we shall see....

Well ur nose is part of ur issue I feel....not sure if u had a leak that sealed or partially sealed....could be a very slow leak as opposed to a faster one b4....

????

[bean418]

Who knows !

Originally I had the leaky nose when this all happened in 2010 for many months.

After I hit the nose, I have not gotten that leaky nose.

Did you say your insurance cancelled you ?  Why do insurance companies cancel people.  Didn't know they did that.

[selmaS]

  Plus the MRI u had was concentrated on the back/ posterior of the brain...not where u nose is located ...unless u are from a diff world....lol...

Really?....if it is all diff they do not tend to have an issue and it also depends on what type INS u have......I know mine may send an approval but still not pay for a service such as labs....

yeah, possibly....makes the most sense....but I am not a medical professional....

[bean418]

But...I had my Brain MRI w/flow study 4 months after the nose injury.  Ahhh, unless you are referring to the scope down the nose that resulted in gagging.  I tell you that is when the vertigo (wrong dx) instability issue came in and turning the head gives off horrible dizziness.

Interesting about the bloodwork as there was a time when so many doctors were orderding so much bloodwork from me that it was a weekly basis and the insurance never mentioned a word, lol.

Oh absolutely regarding pain.  I have had kidney stones a few times during life and tell you they are horrible.  I would much rather endure natural childbirth again anyday then those kidney stones.

So again, are you thinking CSF leak from hitting head in May or from vocal cord dysfunction study in September ?