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

[selmaS]

  LMAO...well it is tempting to fire willy nilly but u can't as theycan collect unemployment and u have to go to a hearing, have a lawyer so it costs the company money unless they can put the proof of blame on the employee...and just not doing the job correctly is enuff the manager on the floor has to write them up and sit down with them, u have to offer more training etc......it is a never ending cycle.

SO u get it too....it hurts like heck....I hate it....not sure what it is from.

Fantastic....glad to hear u have another Dr on ur side...u r moving forward....YAY !!

[bean418]

WOW...just a call that the dictation notes are completed form the NS that referred me to the other NS.  Throughout his 4 pages of notes, he commented that "in my heart of hearts, I believe something is wrong with her"....I was so touched to read this statement.  Woohoo....got my PCP, this NS and my ENT in my court.  He also mentions that although not knowing if this 3-5mm herniation is the problem he believes that if it is this than she potentially could get significant relief from surgery.

Actually, I just came from dentist and have a cracked tooth which will require a crown tomorrow....never a dull moment.  Cardiologist needs to be rescheduled now.  

Ice pick pain is something I have acquired for the last 8 months.  Never had ear infection in my life and don't know what it is either.  ???????

If I worked in retail, I would so fire people left and right, lol.

[selmaS]

  Well I was a HRM at a retail dept store and I was in charge of hiring and training basics...and the dept manager is to do the rest....but the store manager never made the DSM's do their jobs and prove they were training on the floor...so it was very frustrating for me...and with the new computerized registers and time clocks there are some that can not complete training as they have no computer experience.....I had one older woman, that said the training made her feel like Pavlovs dog....lol....not sure what she meant, but I wasted a lot of time trying to help her understand only to have to tell her she was not going to move forward into a position...I wanted to cut her off days b4 I did, but since the store manager hired her, he wanted me to keep on trying past the allotted time which was all of waste...sigh

Hmmm not that I remember....I did have jaw pains....that has all been eliminated ....no issues there ne more...I still have the occasional Ice Pick pain in my ear....it is a sudden pain and feels like someone jabbed an ice pick in my ear....not sure what that is and I am glad I do not get it as much as b4 surgery....

[bean418]

Yes, you are correct in that it is the training or lack of.  What I will never understand is how many bad work ethics employees hold these days and that the companies do nothing about it.  There are so many people unemployed that surely it would not take that long to train (correctly) and place them in the postiion, smh.

That is horrible about the insurance situation.  I hope that I don't have to endure all that nonsense.  Seriously, because my day to day tasks are overwhelming anymore and when something comes up that I need to tackle it is the most difficult thing to accomplish anymore....very sad.  

Example being....I was hit in a parking lot a few weeks ago by someone backing up out of their space....that is pretty much when my headaches came back however I want to say that the headaches are due to the injections wearing off.  Either way I am screwed right now.

Woke up this morning with a horrible toothache.  So now I have to go see the dentist this afternoon (one more appt. this week that I really didn't need)  and get the xrays, workover and hopefully he does not find anything or need a root canal however this is the same tooth that has given me problems in the past and upon dental xray nothing is revealed.  So, embarassing as that is, it will still need to be checked.  I am currently on antibiotics so doubtful that it is sinus infection.

Have you ever had dental pain that was "phantom pain" before your surgery?

Truly overwhelmed.

[selmaS]

  Was the MRI of that area?....Plus, not all CSF leaks show on a MRI....so not sure it would have...

I worked in grocery and department stores and always said thank u for shopping etc....it is the training they get or don't .....

Well now the latest  I heard on the INS debacle is those that did use the site are now having funds removed from their bank accounts to pay for it without being told and prior to the due date....

The Sect...Sebelious (sp) stated they could not tell how many had signed up as they did not pay the premiums yet and moat will wait until they were due.,....and now to find the accounts were accessed and amounts removed...no bills were sent....this is just crazy.

The whole thing is messed up really bad....

No idea what a MRI would cost and I hope to not find out....lol...

[bean418]

Thinking about the MRI and the nose incident.  Wouldn't the MRI have shown if there was a leak after the nose injury ?  Considering the MRI mentions a "probable" retention cyst in the something or other sinus........

Yikes...."probable".

Wonder how much $$$ an MRI is for patients not going through insurance.  There is a facility by me that apparently gives discounted rates for such situations.  Although I have insurance getting a MRI from a different facility may be beneficial at this point,   Such as starting on a clean slate.

I hope your insurance situation works out.  Actually watched the news last night and there was a resident of MD trying to register and the website was messed up then asked questions and gave options that did not even pertain to his situation.  He was upset because he stated that they had so much time/years to get this together and it seems as if they haven't even done test runs on it.  Example:  There was an icon of a person with his name next to it, then there was a drop box with choices as to the relationship he is to the other icon on the other side, another person with his name under it.  He said there is no option in drop box that states "self".  

What frustrates me is that we pay our money to do the work in the grocery store (self checkouts) and the prices just keep going up.  Then with the people hired.....ughhhhh......I always say thank you....always.......however, since when are we to thank people for suporting their business....cashiers wait for the customers to say thank you and they say you are welcome.....a little backwards !