New to Chiary

[SMN128]

Hi, I have a young teen child who has years of history with migraines.   Symptoms are headaches daily, sometimes worse than others, but daily... These are not at the back of the head though.  Has been diagnosed with "moderate" Chiary I (I don't think they told me the mm).  Has many symptoms which seem to fit to me, other than the location of her headache.  Pain, numbness, tingling in hands and feet, dizzy, ringing in ears, back pain and neck pain, does seem generally more tired than other kids same age, is somewhat clumsy...  has tons of joint aches/pains (I'm not sure if all these symptoms fit with Chiary)   Really my child just doesn't feel well.  Anyhow, meds are Topamax and neuronton.  It does ease pain, but doesn't make it go away and it adds to the tired...   The neurosurgeon has ordered an MRI all the way down spine, scheduled in May, but says the symptoms are not typical and doesn't think treating the Chiary will help.  Where/ what do we do now?

[*Stormy*]

Hello and Welcome

I always had headaches but they were not always the "classic chiari" ones..so I wouldn't judge the criteria on that. In fact, I didn't really get the Chiari type until I was much further along....after I had severe leg problems.

I have all the symptoms you described above including the joint and body pain so I also think that can be contributed to Chiari. Like said above..most of it results from the pressure on your spinal cord by the blocked or diminished CSF flow. Also true that it won't heal itself and you do have to watch for progression... so I would try and find a Chiari specialist if you can. FYI- No one could tell me if my problems with my legs were Chiari related or not but after the surgery they got a lot better!!

Carolyn

[selmaS]

Hi and welcome to the Chiari forum.

The only thing I can add is to say there r many neurologists and neurosurgeons that do not believe chiari needs to be treated....they feel it is an incidental finding.Get a second opinion from a true chiari specialist to see what is going on...size of herniation is not the determining factor....CSF blockage is and overcrowding and symptoms r the top 3 things the NS should be looking at.

I know this is all very confusing and frustrating to get this condition and it's symptoms to be treated  seriously....I started with HA's around age 16 that were debilitating....I was sent to a shrink and given prozac.....it took till age 48 to get a dx......

Ur child is lucky to have a parent like ur self advocating and researching this condition......like the others have said ...hang in there and don't give up, listen to ur "mom instincts"......

I am happy to welcome u to our little family, but so sorry the reason u had to seek us out.

"selma"

[olsonkids4]

My ds just had surgery yesterday..he did not have all the symptoms your child is having..but I can tell you what our surgeon told us.  Chiari is not going to heal itself and needs to be dealt with.  Most of the symptoms except headaches he says are not directly related to chiari but is not disagreeing that they can be a side effect of having the pressure and pain from the chiari.  Please keep trying..dont give up!

[jorlex137]

I wish I had a answer for you but I'd like to follow how things go for you all!  I have a 14 year old daughter sounding much like yours!  
We've had two different drs say different things about chiari.  One said he can see it more defiantly and the other said it's too small to cause concern.
However recently she got a real doozy of a headache and it knocked her down for a week.  All she wanted to do was sleep!
I found that she wants to lay down a lot.  I take her dr and they give the typical teen story, but a mother knows when something is off!  
I am in process of getting her to another neurologist whom will take things a bit more serious and that is my only advice for you!  Get your child to someone whom knows about chiari so your child can get the proper care he/she needs!
Good luck!
PS my daughter has some of the same symptoms and has now gotten to the point where she can not feel her bladder, so she goes to the bathroom every couple of hours cause she figures she has to go but is unsure!