Chiari Malformation

[joefrede]

Please help. I am basically on my last leg, so to speak. 2 years back I was having constant headaches, so I went to neurologist who ordered an MRI. In the MRI, she found a Chiari Malformation. A few weeks after, she scheduled me for a lumbar puncture to see why I was  having headaches. After the lp, my headaches went away. However, since then, every spring and fall I get blocked Eustachian tubes and problems with my ears and behind my ears down into my neck. Pain and a watery/air sensation happens every so often. Could the lp have made my Chiari Malformation cause me to have this type of sinus issue now? Basically any doctor I have spoken to either thinks I am crazy or just tells me its sinus' and it has nothing to do with the lp. I've basically have come into a depression since. I really need help guys

[Lottida]

Hi I just wanted to comment on the sinus/ear symptoms.  I had been having headaches for years, but put them off as computer induced from work or just plain ole stress.  I actually woke up 1 day & was unable to hear out of my right ear, ringing in right hear, fullness in ear & dizziness.  These symptoms lasted for 7 weeks daily but would be episodic throughout the day.  I had ENT inject ear with steroids & diagnosed with Meniere's despite MRI of brain showing Chiari I Malformation & Meningioma brain tumor(benign).  I had eval with NS whom said that it was anatomically not possible for Chiari to cause these symptoms.  So, I pushed forward on my own & found a Chiari specialist to review my case.  After having CINE MRI, it was noted that I had CSF flow problems.  I am now 2 weeks post decompression surgery for Chiari & all of my symptoms are gone.  I know that some symptoms may return, but overall I feel soooo much better.  

Listen to Selma & research as much as you can about Chiari as this will help you to know if your doctors are knowledgeable to this disease.  It may take multiple doctor visits before you will find the doc that is right for you.  Surgery is not always an option if you do not have CSF flow problems or other related conditions like Syrinx.  Good luck on your journey & hope you find the answers that will help relieve your symptoms.

[selmaS]

  Hi and welcome to the Chiari forum.

What and whom you need to speak to now is a true Chiari specialist....not ALL Drs are well informed or experienced with Chiari and tend to dismiss us and the symptoms we have.

Not being a Dr I can not say how the LP affected you, but I know we are to be very careful when we have one as they can affect the herniation of the cerebral tonsils...if drawn too quickly it can actually pull the herniation down further....

If you do not have the copies/reports of your MRI and other tests...request them now and going forward always request copies of testing along with reports.Having these will help you get other opinions of  Drs more familiar with Chiari and ALL related conditions.

Chiari symptoms do cycle and flare....so keep that in mind when you go forward with what may have helped or if you were in a down cycle.....weather also affects us and our symptoms.

Use time b4 you see the next Dr to educate yourself on Chiari and ALL related conditions...know you are not alone.