Can a person out grow Chiari Malformation

[lisaalbright]

My son is 9 and has been diagnosed with Chiari Malformation type 1 for 3 years now. He still has sever migraines and has passed out from the pain, but his neurosurgeon still dosen't want to do surgery, his latest MRI showed that his Chiari is so small that he dosen't even consider him to have Chiari, so is it possible to go from having it to not having it?

[selmaS]

  Hi and welcome to the Chiari forum.

U r so right Chiari should not define u  or ne of us....and u r lucky u can say that, unfortunately some of us are affected by Chiari while others may not have the same issues....

I pray u can continue to have the upper hand with ur Chiari DX.

[hopie817]

i was born with chiari type 1 malformation, it was cause by a gene that both my parents had.. and i had to have several MRIs... i am 18 years old now and live a perfectly normal life!! chiari, is still there but it does not define me!!

[selmaS]

no worries...do try to get ur mom to learn more about Chiari and to visit the site even if it is just to see where u r getting ur info.

[shada1]

Thank you very much.

[selmaS]

Yes....I posted to another thread co-existing conditions....u will see there some of the related conditions and issues to rule out.

http://www.medhelp.org/posts/Chiari-Malformation/Coexisting-Conditions/show/1913273

[shada1]

Ok is there any thing else to rule out?

[selmaS]

  That is bcuz I have this too...and it can take a while to connect the dots and know it is ALL related,.,, u most likely r double jointed too.

Make sure ur Drs rule out Ehlers-Danlos as it is very important.

[shada1]

Hi an yes i bruise easily and i heal slowly....its like you know all my symtoyms!

[selmaS]

  Hi....the chocking on ur own saliva is pretty typical for those with Chiari.,..all of us may not have this, but many do.I did.

Acid reflux is also related...as it can indicate that u may have other related issues too....like Ehlers-Danlos....

Do u bruise easy and slow to heal?

Also get ur thyroid check for an auto immune condition...

Also when u go for testing request copies of the test along with reports be sent to ur home....this will expedite getting answers and being able to go for other opinions.

[shada1]

Plus i got an mri saturay but they int tell  us the results so my mom has to call for them but she been so busy that she hasnt been able to call

[shada1]

Im choking on my own spit and i have central sleep apnea and acid reflux i  dont know if thats really related tho.

[selmaS]

  There is no way to know, as I do not know if u have a CSF obstruction.

There are many Drs that do not believe chiari causes symptoms....but those with it know better....and there are a few Drs out there that do research and deal just with Chiari and related conditions.

There is info from Drs ....and we all have Chiari...

What are the symptoms u r dealing with besides balance and HA's?

[shada1]

But the problem is she would beleive any doctor over a cite an one more question is there any other way to treat my side effects other than surgery?

[selmaS]

  Hi and welcome to the Chiari forum,

The best advice we can offer is to get ur mom on this site, and educate urselves about Chiari and find a Dr that will offer insight and help.

There is a Dr in Nashville, but I am not sure if he treats children and adults or just children....so use the list of Drs and research Drs find one that is a true Chiari specialist....not all know how chiari affects us and our over all health.

[shada1]

Ok my mom said i was diagnosed with chiari malformation when i was only like six months and they said i would grow out of it. But  recently i have been having heaaches like crazy where to the point i cannot see.So they did an mri and i have had countless ct scans but they all tell me i should be fine.Now i am always dizzy and when i walk i just fall to one side so i just sleep all day can you help me please.By telling me what we should do.
.

[selmaS]

Hi and welcome to the Chiari forum.

Yes, a child may outgrow a herniation of the cerebellum...if the herniation is caused by something other than a malformation of the skull.....it has been documented.....if it comes back, is unknown to me......

AS the above posters mention, u deff need a true chiari specialist to determine what is going on.....

A concern with a change in size of a herniation which too many uneducated drs do with chiari is  they look at the size of the herniation to determine if there is chiari or not...which is not correct...the malformation of the skull makes it chiari.....

Next, if the MRI's that were done were done so with diff machines or of diff angles....it is possible for the herniation to appear to have shrunk...and that in itself does not mean the chiari is going away.....

Find a good chiari dr, or get a second opinion...and be sure he is ruled out for ne related conditions.

"selma"

[*Stormy*]

Hello and welcome,

Well I think there could really be two scenarios:
1) I have heard of some children outgrowing chiari, it is seen incidentally while being MRI'ed for something else and then when re-checked down the road it is gone. The explanation is that at the time of the 1st MRI, the skull growth was behind but as they continued to grow the skull grew too and made more space for the brain. However, I think that is unlikely to be the case with your son since he is having severe headaches still.
2) Different radiologists/NS measure from different points. One may say you have a 6mm, the other will say no only 4mm. Also, different slices of the MRI show the herniation differently. I know in mine, some of the slices made it look huge where in others it looked like it was barely there.

I would find your son a pediatric NS. Even if his herniation was seen as large, you still might not get the right care for him if you are seeing a NS that doesn't have some knowledge with Chiari. Do you know if he looked at the MRI not just for herniation size but for overcrowding? My herniation wasn't huge but I had major crowding at the back of my skull that was cutting off most of my CSF flow. With headaches that severe I would think that there has to be some blockage going on. Does he have any other symptoms? Being a child, he may have some that you aren't even aware of, that he may just have thought was normal. So you might want to research the symptoms of Chiari, we have some good lists on the Health pages.
http://www.medhelp.org/health_pages/Neurological-Disorders/List-Of-Chiari-Symptoms/show/1024?cid=186

Again, it's REALLY important to get that 2nd opinion from a Chiari specialist (if possible). Most of us here would have never got anywhere if we had listened to the opinions of the first Drs we saw.

Good luck,
Carolyn

[n40066]

hi lisa and welcome to our family
i'm so very sorry to hear about your son.  unfortunately, no...you cannot outgrow chiari.  it is a malformation of the skull, meaning the skull is too small to hold your sons brain inside and the bottom part of his brain, the cerebrell tonsils, have herniated or "fallen out" of his skull and into his spinal canal.  the reason he has such severe headaches and is passing out, is because there is a blockage of the csf or cerebrell spinal fluid.  the csf is to our spine and brain what the oil is to a car.....without it, we have all kinds of problems.  the dr you are taking your son to is obviously not a chiari specialist..please, please,please...do some research on your sons condition!!!!  there is a thread here that has a list of specialist our members have been to and liked.  use that list as a guide to call around and ask questions until you find one that sees children that you are comfortable with.  you might even get lucky and find one that lives near you, but most of us have to travel.  also, your son should have an mri of his entire spine to be checked for other conditions that chiari can cause, such as a syrinx, tethered cord, sleep apnea and eds to name a few!  there is NO CURE for chiari and the only way to stop the progression of the symptoms is thru surgery.  the time to have surgery is when you and the dr decide the time is right....but when you wait too long, you risk perm. nerve damage, brain damage, paralysis .  i'm not trying to scare you....but you need to be educated in order to best help and protect your baby.
we've got a great group of folks here that are only too willing to help you in any way possible!  feel free to ask questions or just vent and if you need a shoulder, we're here for that too!
elizabeth