Cerebellar Tonsillar Ectopia

[Grunty]

Hi, I have been diagnosed with Cerebellar Tonsillar Ectopia (6mm). My question is.... Is it the same as Chiari Malformation?  I have the usual symptoms posted by others  ie Headaches, sore neck etc My doctor is uncertain it's the cause despite pain during vasalva manoeuvres.

[selmaS]

  There are so many related issues it can sometimes be confusing as to what is a Chiari symptom or a related condition symptom.....

EDS is related to Chiari and those with EDS can over produce histamine which in turn may cause PND which in turn will cause reflux....

I still am not sure about the low BP but I have always had that one too....

[chiarizebra]

Interesting...I was wondering if my GERD was realted to this and I also have low blood pressure.

[selmaS]

  Hi...thanks for the update.....and I am glad to hear you will be getting a MRI...

Is this Dr a Chiari specialist?...

Hang in there....and keep us posted.

[Grunty]

Hi, just an update that since my last posts. I have since had a MRI and waiting on the results.
My Neurosurgeon is not certain that my symptoms are related to my Cerebellar Tonsillar Ectopia and ordered a MRI to try and determine a cause either way.
Sounds daft but I hope they find something or confirm Chiari otherwise I'll think I have gone mad!

[selmaS]

  Many with Chiari also have sinus issues and PND can add to the cough and even acid reflux....talk to your Dr about possible issues with too much histamine's in your system...it my help with your cough and maybe even help with sleeping as many of us have sleeping issues.

For me I know pain meds did not help b4 I had surgery either.....

Make sure you are checked for a CSF obstruction and related conditions like Ehlers-Danlos...as it can affect the outcome of surgery.

[Grunty]

Hi, just wanted to post an update. My Neurologist has now requested the Neurosurgeon review my notes\scans and have a meeting with me to discuss further treatment options. Hopefully the appointment will come through quickly and I will post his comments on here.
My symptoms remain the same and have not been improved through pills (70mg daily of Amitriptyline). Willing to try anything now even if the recovery can be difficult. The CM effects every single day and the activities I do with my family. (Now have a persistent cough 3+ months now to add to the list of possible CM symptoms)

[selmaS]

  Yes George Clooney had this due to a fall while filming the movie Seriana (sp?).....he had to have the surgery due to the pain...and I think he may still have an issue....but low lying tonsils can be the result of trauma or a LP drawn to quickly....

@ Grunty -  Yes, many of us have GERD....I do and I had very low PB instead of high BP...but I feel Chiari is at play which ever one it is.
One way to help with those night GERD issues is to 1- do not eat for 3 to 4 hrs b4 laying down. 2- elevate the head of the bed. 3- Modify your diet and lifestyle and take meds to help with it....

I had heart palps and my dad does have some heart issues, so I did have testing to rule that out which I think everyone should...look to family history too, but be safe and know for sure....

I will tell you that post op I still have GERD it is under better control now....but the heart palps have stopped and even the low BP has gotten closer to a "normal" range.

[Grunty]

Thank you for the time to answer my question. It has helped me understand that I am in the right community.  At the moment my symptoms are mixed but I can cope with them and wouldn't want to go down the route of surgery yet. This could all change of course in the future but if I am lucky things wont progress that far.

A quick question - I am ttreated with medication for High Blood pressure and GERD. Could these be symptoms of Chiari too?  I am only slightly overweight (aren't we all!) and eat quite a good diet.... having high BP is odd as no one else in the family has it. The GERD shows it's head by causing chest pains (Which can wake you at night), the Dr doesn't think it is heart related.

[VMZ14]

Selma I didn't know about the low lying tonsils being a result of trauma.

[Grunty]

Thank you for the answer, it can be confusing when different terms are used. :-)

[selmaS]

  Hi and welcome to the Chiari forum.

Actually low lying tonsils and Chiari are 2 different things BUT they have the same symptoms and  treatment is the same,each Dr uses a different term to  give a DX it seems but it can very well be the same thing ...you will have to ask if your condition is congenital or acquired.

With true Chiari the skull is malformed....with low lying tonsils the skull is of normal size and the tonsils herniate due to blunt force trauma....

As mentioned above the herniation size does not matter..what is of importance is if it is creating a CSF obstruction....there is more testing to have done to check for this and other related conditions as they can also cause many of the same symptoms.

First thing to do outside of educating yourself on this and ALL related conditions is research Drs and find a true Chiari specialist...and also know you are not alone : )

[VMZ14]

Yes it is as Selma will soon respond the size of the herniation doesn't matter it's whether you have symptoms or not.