symptoms/growth

[olivejuice]

Thanks so much for your answers so far.  So many more questions - got the MRI from Nov 08 - it showed tonsils at 3mm and the report states "no indication of Chiari I Malformation".  The MRI results from 2 weeks ago show tonsils at 5mm.  Is this type of growth typical?  And now we are being sent to a NS Chiari specialist.  Again, my son is 9 years old.

Also - does anyone experience OCD or anxiety that has been directly liked to Chiari? Or if it is experienced and not directly related has it bettered or worsened following surgery?

Ready for this Thursday and some real answers!

[Shane99]

Yeah, I agree. So many people - even post surgery patients and doctors - don't get that Chiari isn't curable. The surgery and meds help, but if you have it, you have it for life.

Like Devin alluded to - you often have to be your own advocate. The ER doc or your PCP doesn't understand how you feel. Don't let them tell you that you don't have anything wrong with you or that it's "all in your mind".

I advise everyone to keep a notebook or trapper-keeper handy and record how often you feel bad, try and describe it if you can, but don't "over-describe". Doctors are taught that people who over describe something are more than likely just trying to score some drugs. Keep it simple, but accurate. Record any weird symptoms even if you're not sure they're related, they might help, let the doctor rule them out. Also keep several copies of a basic Chiari/Syringomyelia Primer with you to hand out to the Doctors and nurses you deal with - most doctors have never even heard of Chiari.

Make sure when you talk to the doctors that they spell out any big doctor words, so you can research on your own later.

[Devin215]

Hello I would like to make a comment to. I don't specifically think that Chiari is directly related to anxiety. Like Shane mentioned I know that for me the medical issues the Chiari created caused me to be anxious. I will give an example. I refered myself to a neurologist because I was in the ER in March with the worst headache of my life. Keep in mind when I was in the ER I was shaking the hospital bed because I was in so much pain it was un-bearable and once I was seen by the Dr. it took them over an hour to give me them meds to help me. The ER Dr told me if I would just relax my headache would calm down I basically told him to shove it he doesn't understand. He looked at my MRI claimed it was normal....My regular Dr said it was normal....The neurologist looked at my Same MRI the other 2 looked at and said....Oh here it is, You have Chiari, You need to see a Neuro-Surgeon, I don't know much about it but you might need brain surgery, go see this guy...That same neurologist later on after I saw the Neuro surgeon who recommended surgery told me I look anxious on a later visit and wanted to put me on anti seizure drugs to help with the headaches and level out my moods... So just keep that in mind with Chiari you have to learn to take each day one at a time and just know that some will be good some will be ok and some will be bad...that has been at least for me and I am sure many others on here one of the hardest things to accept. Even post surgery which me, shane, and selma are.

[Shane99]

Again, I find myself in agreement with Selma - glad to know you had everything covered so great while I've been away.

So much of reading an MRI is like an art - two experts can see two things. But yes, a herniation can grow that fast. A friend of mine from these boards herniation grew from 5 to 10mm in six months.

The health issues associatied with Chiari can definitly cause anxiety, but it's not a direct link to OCD or clinical anxiety. What Selma described is a coping mechanism to deal with the fact that our brains are somewhat malformed and being squeezed out of our skulls :) We often have memory problems, but these mnemonic devices aren't clinical OCD.

[selmaS]

Hi...sometimes the herniation can grow rather rapidly...and other times it is the slice they use doing the MRI......

Imagine an upside down pear....slice it top to bottom.....3 ways......or 3rds....if u look to the left or right the slice is shorter than if u look at the slice in the middle.

So, there could be a few different things going on...so a chiari specialist will be able to sort this out for u.

As for OCD....sometimes I wondered about that bcuz I will do a task the same way each time...I get a routine and I do it to avoid forgetting...I always said we do things automatically to compensate for our shortcomings....and OCD issues could be just that.

I am not sure just MHO.

I had surgery and I stil follow certain rituals.....but, not working or having those big stressors like school ect...I really do not think I put it to the test after surgery.....

But I was not dx OCD, and I am not what I think of as OCD....u would have to say what ur son does that is OCD for me to know if it is at all similar.


I hope this helps : )

"selma"