Question about low-lying cerebellar tonsils in child

[Jpooh]

What exactly is a low-lying cerebellar tonsils 4-5mm in an 8 year old child who has headaches that are only in the back of the head?

Thanks

[selmaS]

  I agree with u and hope u have a good visit with the Chiari specialist.....
Please keep us posted as to how ur DD is doing and what u find out.

  and Have a Merry Christmas : )

[sassy123111]

No not yet.. Right now we are seeing a neurologists in Fl. We have an appt. in  Feb. His nurse also told us, like I said before there is nothing wrong with our daughter...My husband and myself feel strongly that her seizures are due to this malformation. Thanks again.

[selmaS]

  No worries...I just do not understand y she told u what she did....how can she tell u how ur DD is affected by the Chiari...was she seen by the NS?

[sassy123111]

I spoke with a nurse in  a neurosurgeon's office in VA. They specialize in Chiari Malformations in pediatrics. Sorry for the confusion... Thanks again for all your help. Heather

[selmaS]

Hi...what do u mean a chiari nurse?.....Chiari can change, there have been so many on this forum that have had a change in their herniation....and obstruction.....It is possible it may not change, but it is just as likely that it may....and having the herniation is not the concern., if there is an obstruction and how it affects her over all health is more the issue.

May I ask what office did u call?

   "selma"

[sassy123111]

I was just talking to a chiari  nurse at a neurosurgeons office, and she said that my daughters borderline chiari will NOT change. It won't get worse, or better. Basically it will stay the same.Is this true? Also that her seizures have nothing to do with the Chiari. She only has seizures when she hits the back of  her head. SO confused....

[selmaS]

  Yes, but too many Drs use a certain size herniation to consider it an issue, most want to see a herniation of 5mm or larger...IMHO that is not the problem, it is the width not the length that makes the difference....

The best way I have to describe this  is for u to consider the skull where the herniation or low lying tonsil are to be like a funnel....if the tonsils were very long many Drs get concerned, but consider this- if they are long, and thin like shoe string licorice u could hang some down the funnel and it would not obstruct the flow of fluids.....but, change that to a upside down gumdrop, which may not hang down into the funnel, but it will cork up the opening and cause an obstruction.....

Only the Drs that deal with Chiari on a regular daily basis r aware how  chiari can affect us with minimal herniation......

   "selma"

[sassy123111]

No she does not have reflux..... It could be gas:) So when her cerebellar is lying low..is that a herniation??  I'm new to all this...so i don't know a whole lot about it. Thanks again.

[selmaS]

  It is possible the tonsils could herniate further, it could be a slow gradual increase in size or it could be quick....it all depends on her activity....there is a list of activities to avoid to help avoid symptoms and herniation.

As I mentioned, it is whether or not she also has a CSF obstruction, not the size of the herniation....

  I asked about IBS due to her stomach pains....does she have reflux?

  Deff get copies of hte MRI and CT so they can be compared...and try to keep her from bumping her head...or getting josseled around.

[sassy123111]

No she does not have IBS....she just drinks  a lot.....no diabetes either.... We will def. look more into this.Could her low lying tonsils become lower? she had an CT scan in Jan of this yr. and nothing was found on it. But her MRI last week showed the borderline low cerebellar tonsils... Thanks again for all of your helpful information.

[selmaS]

  The thirsty part is puzzling...has she been checked for other health issues like diabetes and thyroid?

Not that I do not feel it is the tonsils, but, many with chiari can have additional  issues and  an auto immune thyroid condition is highly possible as well as issues with her sugar levels as the pituitary gland can get compressed and this can cause all types of issues.

Swallowing issues again can be chiari and thyroid...so this deff needs to be looked at closer.

  With the stomach issues, does she have IBS?


    "selma"

[sassy123111]

She is thirsty all the time.....also

[sassy123111]

She complains that her head hurts. her stomach hurts her  alot. she gets dizzy.and like I said before her seizures. That is it that we have noticed. The first time she hit her head and had a seizure..she would gag on everything we gave her. Even applesauce. She had a hard time eating.
'

[selmaS]

  Well, u spoke with a nurse...there are NS's that have no idea the effect chiari has on people....u need a true chiari specialist to review the MRI's....and all her symptoms.....

May I ask what other symptoms ur DD is having?

   "selma"

[sassy123111]

I would like to add that my daughter ONLY has seizures when she hits the back of her head. I had asked the nurse if the low lying tonsils could cause this and she told me NO. That they are unrelated. As I stated earlier in my post she said nothing was wrong with her. I just wish we could find the answer   as to whats going on with our little girl.

[selmaS]

  U r right, but not all low lying tonsils produce symptoms  or affect overall health...do have more testing , like a CINE MRI to see if there is a CSF obstruction....

No worries : )

  I pray ur family has a Merry Christmas as well.

      "selma"

[sassy123111]

Thank you so much!!! From what I have read about low lying tonsils it's nothing to ignore.Thank you again. Have a great holiday!!

[selmaS]

  Hi and welcome to the Chiari forum.

I would suggest u request copies of the MRI and the report and get a 2nd opinion and seek the opinion of a chiari specialist.....since ur DD is having seizures it is possible that it is related to the low lying tonsils.....

It can also  have nothing to do with chiari, but, there have been many children and adults that have had seizures along with chiari.

  Too many look at the size of the herniation, instead of the obstruction and symptoms....
   We do have a list of Drs in our Health Pages listed to the bottom of this page...scroll down...use the list to research the drs to find the right one for ur DD....the list is not meant as a referral.

    "selma"

[sassy123111]

My 3 yr old daughter started having seizures back in Feb of this yr. We have had several EEG's and finally she had her MRI done last week. Her MRI results showed borderline low position of the cerebellar tonsils. I called to talk to her neurologists, but talked to his nurse instead and  she  told me that it's normal, and nothing is wrong with her MRI. Can anybody give me more info on this please.Thank you

[selmaS]

Yes...an 8 yr old does not know how to deal with the pain will be grumpy...so am I  at my age it is normal for those with pain to be agitated....and being in pain sooooo much will tire u out,

"selma"

[Jpooh]

I took my daughter to another neurologist and he diagnosed her  with Chiari 1 and Megalencephaly. He wants her to go see a neurosugeon, so we are in the process of doing that.
I do have a question for you. Is it normal for someone with Chiari 1 to be grumpy and tired all the time?

Thanks,
Juanell

[selmaS]

Hi...I am not aware of a Dr there, but here is a link to our list...use the list as a way to start research on the drs...it is at least somewhere to start.Not all drs on the list may be true chiari specialists, but members here have used and like them....find one u like and be advised u may have to travel to get to one.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

"selma"

[Jpooh]

I'm so mad right now! Arg.. Took my daughter to the nerologist yesterday this dr, was a quack. He read the report about her Cerebellar tonsils being 4-5 mm below the fm and did not even want the cd of her MRI and Cat scan. He told when I asked him if the cerebellar tonsils can possibly descend and he said "I don't think so" I also told him that my grandfather had them too anf he totally blew me off. He even told my daughter that she looks SEXY in her glasses.. WTH! He also said that it's not Chiari eventhough she has low-lying cerebellar tonsils and has daily headaches, blurry vision, cold feet, ect... He said her headaches are from a pulled muscle. I'm so frusteratd.. I really think that I need to find a Chiari dr. Do you happen to know any here in Virginia?

Thanks,
Juanell

[selmaS]

Hi Juanell,

Yes, the tonsils can descend or herniate further ....they can do so very slowly over time or very rapidly...so she should be monitored if a chiari dr says she is not a surgical candidate at this time.

If she has ne changes in her symptoms she should be seen ASAP.

I am sure ur DD does not have a syrinx in the cervical area if noted on the MRI, but a syrinx can form in other areas of the spine and MRI's of the areas should be done to rule that out as well...thoracic and lumbar areas.

I would suggest u see a chiari specialist to see exactly what is going on...overcrowding is something they should look at closer and not the size of the herniation.

"selma"