How to get doc to test for Chiari?

[Dianne58]

Hi, after 30 years, I finally googled spina bifida occulta, and found sites on Chiari malformation.  I couldn't believe it!  I have ALL the symptoms of CM but doctors have not found this.  I have had MRIs w and w/o contrast and CT scans, but I keep asking them if there is a test to look at my head when I'm standing up because that's when I get the severe head pain.  All the doctors, and there are many, have diagnosed me "crazy" because I have too many symptoms they don't understand.  I keep telling them that I cannot exercise without getting a major migraine, or bend over to even vacuum without get dizzy and vomitting.  I've had my throat stretched twice because it feels like my throat is closing, esp. when I'm sleeping....just diagnosed with sleep apnea.  I've even been to Massachusetts General in Boston to see a cardiologist and neurologist.  The cardiologist put me on Inderal because when I stand, my heart rate goes to 125.  A positive tilt table test revealed that my blood pressure drops to 76/46 in 13 minutes upon standing.  The pain!  OMG.  They won't give me narcotics in fear of addiction.  I go to ER once or twice a month and now my husband won't even bring me!  ...had to call an ambulance 2 weeks ago.  When I have my brain attacks, they get harder and longer with each one, now affecting my vision.  I call it "cracked" vision, as it looks like a cracked mirror image through my vision.  Now when I have the head pain (all the doctors are calling it migraine), all the toes on my left foot go numb.  See?  Too many symptoms and I sound crazy, but I cannot stop going to doctors until I get some kind of diagnosis.  I cannot live with this pain.  I have been out of work since Oct 2009 and I just can't go back in fear that the symptoms will get BAD again.  If I sit and rest a good part of the day, i am okay.  It's standing up and sitting down repetitively.  How do I give the doctors to give me more tests?  What additional tests should be done?  Where do I go?  I live in Connecticut.  Would the CINE MRI test show more than just an MRI alone?  Do you believe in a Chiari 0 diagnosis?  Am I crazy!!??   PS:  I had an uncle who had spina bifida with club foot.   Thanks for your replies.  I would so appreciate it.

[selmaS]

Hi and welcome to the Chiari forum.

Well it does sound like u may have pesudotumor cerebri since u have a positive tilt table test and the pressure when u stand....u may even have POTS.....

U need a good NL = neurologist to give u tests to look for all these conditions including chiari...tethered cord, EDS, syringomyelia.

It is possible u have Chiari 0...and very few NS=neurosurgeons believe in that dx...so u need a true chiari specialist that does.

But I do feel, and I am not an expert, but it does sound like POTS or PTC.....

Please look at our specialist thread here on the forum and research the drs as the are not recommended but r drs that members here have used and liked. I feel everyone must find the dr they r most comfortable with and it may not be the same one as I would choose......

I also have a relative with spina bifida and feel the relationship is on my fathers side of the family.

"selma"

[*Stormy*]

Hi Dianne

I am sorry about all the stuff that you are going through, I know how awful it is having no one believe you and I only was dealing with it for a year or so.

Have you specifically asked about whether there is a CM malformation or not? Mine showed up on my MRI and my NL did not tell me about it because it was cited as "incidental" on the report (they were looking for MS lesions). A lot of Dr's will just discount it as being asymptomatic which is COMPLETELY untrue. In my case I got a second opinion with a good NS and he saw it on my MRI right away. I went back to my NL and asked him about it and he still tried to maintain that it wouldn't cause my symptoms. So I just wrote him off and went with my NS. Try and get your MRI pics if you don't already have them and ask your doctor for the MRI reports.

I have heard of Chiari zero and heard stories of people that have gone through it. In that case the problems are more caused by the cerebellum being pushed up against the back of the skull and restricting CSF flow instead of the herniation causing it. A CINE MRI would be a good thing in that case because it is the only way to confirm that the CSF is being restricted and would give you a lot more to go on!

The symptoms you describe sound a lot like what I and others here have gone through so I would try and get some answers.

Good luck to you!
Carolyn