If not Chiari... Then what?

[bwaldon4]

My wife has a chiari that is probably only 5-6 mm on one side with a very small syrinx. Symptoms camel's one progressively after whiplash accident.

Aside from obvious neck and back pain she started getting tingling and stabbing pain in her pinky. It eventually made its way to other fingers and body parts.

There were no obvious triggers in the beginning but now laughing too hard, sneezing, bending over, even bring the car to a stop or turning a corner causes head pain, stabbing pains (in face or hands and sometimes her legs and feet), and weakness.

A neurosurgeon we just saw wasn't "impressed" by the chiari and said that he would need to see a blockage on cine mri.

My question is this: if there is no obvious blockage, what could cause these symptoms?

One neurosurgeon said that he knows only two conditions that could explain her symptoms: multiple sclerosis and depression. And since she doesn't have any obvious lesions on her MRI, she must be depressed. Yet, she is one of the least depressed persons I know!

[selmaS]

  EDS is not just hypermobility.....I also did not feel as though I was very flexible and my Dr explained why.....since our joints are lax, our muscles work harder to hold us together , hence we feel tight and not flexible at all.....BUT I do have EDS and my joints are hypermobile.....make sure a Dr does the testing for this to be sure....I was shocked to learn I had this.

I did not see any difference when my head was pushed on or lifted either.....

Yes, it is tricky trying to figure out what is causing what with Chiari and all the symptoms....hang in there and keep pushing for answers.

[selmaS]

  IIH can be related to Chiari..caused by I am not really sure.....but when you factor in that Chiari affects the spinal cord and or brain stem, it seems anything can happen.

Does she have Ehlers-Danlos? CCI tends to be connected to that....I was told I had CCI and would need a fusion....I have yet to get it and really feel I was lucky as my neck seems stronger rather then weaker after my laminectomy....

Have you tried lifting her head instead of pushing down on it?

[bwaldon4]

We used a pillow cervical traction unit (lifting her head) and it seemed to spark symptoms both times. We will try a few more times.

As far as EDS is concerned, she isn't very flexible in her joints. Never had any hyper mobility or anything like that.

[bwaldon4]

I think the tricky thing is determining how much instability is to due to chiari compressing and damaging nerves and to other conditions.  

[selmaS]

  I did have a CINE MRI and it did show slowed or minimal flow...I aso had a few other issues....a partially retroflexed odontoid which made the area even more crowded. I had drop attacks which made having the surgery a "no brainer" no pun intended....

You may want to have her tested for POTS...Postural Orthostatic Tachycardia Syndrome....as well as Intercranial Hypertension......since she has positional symptoms.  

Not sure 20 decompressions a year is a specialist....but I am sure feels like they are....for me, I wanted a Dr that only does Chiari and Chiari related surgeries.....not one that has one every now and then....a specialist does research and his practice is focused on Chiari and ALL related conditions.

I had a few Drs tell me I did not have Chiari, one said I did ( was a supposed specialist) and he said it was "above him" and he could not suggest what I do....?? So, it is not always easy to recognize a true specialist.

A syrinx can remain the same, or increase in size very slowly or very rapidly....and you never know when it may change.....we had a few members here that had a very sudden change in status on their syrinx and had to have emergency surgery....which is not the way anyone of us would prefer to have this or any surgery done.....

[bwaldon4]

I am also interested in craniocervical instability but her symptoms aren't made worse when I push on her head, soft cervical collar doesn't help, and two times we tried doing traction it sparked symptoms.

I definitely think there is some form of intracranial hypertension. Can't this be caused by chiari?

[selmaS]

  Hi...not sure this Dr was/is a true Chiari specialist....so do try researching your Drs.

Also where is the syrinx? A syrinx typically develops with an obstruction to CSF flow....my surgery was done to prevent a syrinx from forming as I did not have one yet......

And surgery is done once a syrinx is formed to prevent it from growing and with hopes it shrinks.

Do look to other Drs and research them well.

BTW- my cerebral tonsils herniations measured at 6 mm on one side and 4 mm's on the other....my surgery was done in May of '09 and I have had many positive benefits and would do it again if ever needed.

[bwaldon4]

He does at least 20 decompressions a year but seems to think the length makes a big difference. Interestingly, he is the best NS we've seen so far because the other ones literally say she does not have Chiari... I wonder if they even measured or just eyeballed the herniation?

The syrinx is in the cervical region and has remained the same for the past year.

Did you have a cine MRI before decompression?

BTW she also seems to have more symptoms if she lays flat on the ground. The other day I had her lay on her stomach and she got a horrible pain (neuralgia) in her right hand and then I had her turn onto her back and the same horrible pain went into her left hand.