Chiari Malformation

[fourcatmom]

I posted this on my old thread but since it's sort of a new topic that is coming up, I thought I would post as a separate question. I was reading old threads and it seems that are some people on here with some experience, so hopefully they will chime in.

 

Dd had her third brain MRI this week, she is still struggling with chronic headaches and based on a recommendation from PT they wanted to look at her neck again. This is all from the TBI she suffered last December.

 

In 2/2013 she had an MRI due to a the sudden onset of double vision, headache and eye pressure.  We still do not know why that started. The MRI noted crowding at the foramen magnum but evidence of cerebellar tonsillar ectopia. In my old thread on double vision, I posted that the doctor was not concerned with CM and did not believe any follow up MRI's were necessary and that she would outgrow it.

 

Her first "diagnosed" TBI was in December of 2013, 10 months after this MRI. They did not do an MRI at that time. 2nd diagnosed TBI was 12/2014 and they did an MRI in 1/2015 and the report states: that there is again mild soft tissue prominence in the posterior nasopharyngeal midline as noted previously. (Not even sure what this means or if it is the same thing) 

 

In her most recent MRI the report states that she does have cerebellar tonsillar ectopia.

 

The message from her doctor says that The radiologist did note cerebellar tonsillar ectopia, which is where in the back of the brain part of the brain tissue juts out a little. This can lead to something called a Chairi malformation, which can lead to obstruction of flow of fluid in the back of the brain that can lead to swelling in the brain and cause a lot of headaches and possibly blurry vision. On the MRI no signs of obstruction were seen and so she does not have Chiari malformation now and this would not cause her headaches but I would like to check an MRI again in 1 year to see if anything has progressed from before. Unfortunately the MRI does not explain her headaches

 

Someone mentioned possibly having an upright MRI would give more details. If she were having no symptoms I would not mind waiting another year but my concern is why did it change? There was no cerebellar tonsillar extopia in 2013 and now there is, two concussions later. Could a third concussion have started this whole thing back in 2013? The doctors think she has had more then two. Did the trauma from the two TBI's cause this to change? She had the crowding but they obviously didn't think she required follow up so they didn't expect it to change. And, the symptoms. Balance problems- repeated TBI's, dizziness, memory problems, depression, double vision (OT just confirmed she is still testing as having double vision), ringing in the ears, nausea, tingling in the legs, chronic headaches - although they are almost always in the front. The headaches often come after activity but can also be brought on from noise, ect. She lost over 20 pounds after the last TBI because she complained of a lack of smell. A lot of these symptoms could still be PCS but they are also listed for CM which she obviously has some early signs of or things relating to it.

 

I already email the doctor asking about an upright MRI and we see the TBI specialist on Monday. Any information you could share would be great. Thanks!

 

 

 

       

 

[fourcatmom]

Maybe I should post this question on the chat board?

[prairiewindmomma]

Have they checked her intercranial pressure if they are worried about chiari?

 

I am not a chiari expert, a neurologist, or any type of medical expert. The dizziness, lack of balance, and memory issues are explained by cerebellar damage/pressure. Likewise, the other stuff could be tied to cranial nerve damage--especially since the ones you mention are tied to nerves with long tracks through the brain.

 

When my dd's brain tumor began to block the flow of cranial fluid, it was obvious in the MRIs--are you seeing built up fluid or just changed in brain structure?

[Ottakee]

Did they check the flow of cerebral spinal fluid during the test? I would ask for that. Are the doctors/hospital you are working with up to date in Chiari I malformations?

 

My 18dd has that and we have to monitor her but since an episode at age 9 she has been better. She is on seizure meds as well.

[fourcatmom]

Did they check the flow of cerebral spinal fluid during the test? I would ask for that. Are the doctors/hospital you are working with up to date in Chiari I malformations?

 

My 18dd has that and we have to monitor her but since an episode at age 9 she has been better. She is on seizure meds as well.

 

No they did not. it wasn't something that was even on my/their radar since two years ago it seemed like a non issue. They don't seem concerned by it. I am just wondering if they are missing something since she has a lot of the symptoms that seem to be identified with it and she now has the cerebellar tonsillar ectopia which was not present two years ago. They don't want to do another MRI for a year.

 

I am just trying to understand this more so that I can ask the right questions and push for what I feel is necessary, if anything.

[fourcatmom]

Have they checked her intercranial pressure if they are worried about chiari?

 

I am not a chiari expert, a neurologist, or any type of medical expert. The dizziness, lack of balance, and memory issues are explained by cerebellar damage/pressure. Likewise, the other stuff could be tied to cranial nerve damage--especially since the ones you mention are tied to nerves with long tracks through the brain.

 

When my dd's brain tumor began to block the flow of cranial fluid, it was obvious in the MRIs--are you seeing built up fluid or just changed in brain structure?

 

They didn't mention anything about fluid. It was the change in the structure. I am not sure they are worried about Chiari but I am curious about given this change and her symptoms. They want to repeat MRI in one year.

[prairiewindmomma]

I guess my question is...even if there is acquired chiari...then what? A shunt (but there's no fluid build up)? Decompression surgery (but ICP levels haven't been measured)? I'd keep asking questions, but at some point with brain stuff there's a huge trade off when you try to fix problems....

[geodob]

While Chiari M has 5 different types, so far.

This is one variation of cerebellar tonsillar ectopia.

With Chiari, the Tonsils descend through the Foramen Magnum.

What the Foramen Magnum is?

Is basically the hole at the bottom of skull, where the brain and spinal cord connect.

So that the Tonsils can be displaced, and be positioned in this hole.

Which of course, squeezes everything passing through the hole.

But an important thing, is that tube carrying our Cerebro-Spinal Fluid, also passes through this 'hole'.

When the space is being squeezed, it is the tube carrying the CS Fluid, that gets squashed to some degree.

Which will disrupt the flow of the Fluid.

Though this Fluid is under pressure, and is pumped by every heartbeat.

So that what this causes, is swollen pressure points. Which can be in the lower brain and spinal column.

Which will effect the function in that area.

 

But these Tonsils can be displaced in a different way, instead of into the Foramen Magnum hole?

With a hit to the head, or with whiplash?

The brain actually move and gets slammed against the inside of the skull.

As the brain moves, it can also move and displace the Tonsils.

Then the Tonsils can remain displaced.

Which can then squeeze the CSFluid tube, in a different place/s?

 

But the problem is that, most doctors will only for look Chiari, and Tonsil displacement into Foramen Magnum hole.

Dismissing any other displacement as causing a problem?

Which your doctors seem to be doing.

 

Though the diagnostic process for Chiari, can also be used to diagnose other 'types' of Cerebellar Tonsillar Ectopia.

The correct way to diagnose Chiari?

Is to gather a medical record and history.

Then to record any symptoms.

Followed by an MRI, to image the Tonsils.

Next a test of the flow of the CS Fluid in the brain and spinal column is done.

Using a different type of MRI, called a cine-MRI.

What this does, is create a moving image/ movie, of the CSF flow.

Which will identify any flow, and also the pressure points.

This is the important one, to identify whether your daughter's cerebellar tonsillar ectopia, and particular Tonsil displacement.

Are causing her symptoms?

Which can then be diagnosed.

It just needs to be looked at further than Chiari.

 

But one other thing that I would ask?

Is if the doctor checked the MRI scans for any 'Tonsil fragments'?

As with concussion to the head.  It can cause fragments of the Tonsils to break off.

Which cause significant problems.

[fourcatmom]

Thank you. That was a lot of information and I appreciate you taking the time to write it all out.

[fourcatmom]

The doctor appointment went well. He is sending back to the Neurologist to have all the films reviewed and to further asses the cerebellar tonsillar ectopia and possible CM as well as the headaches, double vision and other symptoms.

He also gave her 8 weeks of PT to strengthen her neck.

[Tiramisu]

Here's something that seems to be relevant since you mentioned scoliosis in your other posts:

 

 

Lee R, Griffith J, Cheng J, et al. Effect of upright position on tonsillar level in adolescent idiopathic scoliosis. European Radiology [serial online]. August 2015;25(8):2397-2402. Available from: Academic Search Premier, Ipswich, MA. Accessed November 10, 2015.

 

Because of the copyright concerns, I decided to pm the abstract to the OP. But here are the key points from the author (AIS is referring to adolescent ideopathic scoliosis):

 

Key Points: • AIS patients exhibited greater cerebellar tonsillar descent in upright than supine position. • Cerebellar tonsillar position was lower in AIS patients than normal subjects. • AIS patients exhibited greater tonsillar excursion between supine and upright positions.

 

 

 

[Tiramisu]

Here's another one that's possibly more relevant:

 

Freeman M, Rosa S, Kohles S, et al. A case-control study of cerebellar tonsillar ectopia (Chiari) and head/neck trauma (whiplash). Brain Injury [serial online]. July 2010;24(7/8):988-994. Available from: Academic Search Premier, Ipswich, MA. Accessed November 10, 2015.

 

CTE was found in 5.7% and 5.3% in the recumbent and upright non-trauma groups vs 9.8% and 23.3% in the recumbent and upright trauma groups ( p = 0.0001).

 

What's interesting to me is that the author seems to be saying that CTE equals CM. Here's the first two sentences of the abstract which seem significant for your dd:

Chiari malformation is defined as herniation of the cerebellar tonsils through the foramen magnum, also known as cerebellar tonsillar ectopia (CTE). CTE may become symptomatic following whiplash trauma.

[fourcatmom]

Here's another one that's possibly more relevant:

 

Freeman M, Rosa S, Kohles S, et al. A case-control study of cerebellar tonsillar ectopia (Chiari) and head/neck trauma (whiplash). Brain Injury [serial online]. July 2010;24(7/8):988-994. Available from: Academic Search Premier, Ipswich, MA. Accessed November 10, 2015.

 

CTE was found in 5.7% and 5.3% in the recumbent and upright non-trauma groups vs 9.8% and 23.3% in the recumbent and upright trauma groups ( p = 0.0001).

 

What's interesting to me is that the author seems to be saying that CTE equals CM. Here's the first two sentences of the abstract which seem significant for your dd:

Chiari malformation is defined as herniation of the cerebellar tonsils through the foramen magnum, also known as cerebellar tonsillar ectopia (CTE). CTE may become symptomatic following whiplash trauma.

 

That is almost what the doctor yesterday implied as well when I said on the MRI report (which since it was a different medical clinic he could not see) stated that she had CTE. He said, that's CM. He is sending us to a neurologist and I will bring all three films on CD for the MRI's from 2013 to now and see what the neurologist thinks. On the referral he put "to evaluate your double vision and headaches and the possibility of some contribution from Arnold-Chiari malformation."

 

Thank you for the research info. I will look into that today.

 

[fourcatmom]

I guess my question is...even if there is acquired chiari...then what? A shunt (but there's no fluid build up)? Decompression surgery (but ICP levels haven't been measured)? I'd keep asking questions, but at some point with brain stuff there's a huge trade off when you try to fix problems....

 

It matters because we are still actively seeking treatments for her symptoms which they are assuming are related to post concussive syndrome. If they are being caused by CM then I would want to know that. She is on medication (depression and headaches) and I am not sure if that would change if CM was added to what might be causing these symptoms. I don't want to wait another year to have this info since she is still really struggling, not even doing full time homeschool. I don't know what path I would choose if CM is playing a role here and I can't even go there yet and think about all that. It could be nothing. If she were symptom free then I could wait. Even the CBT therapist keeps telling me to keep pushing for answers. She has said that the "normal" treatments and things that she does with clients with the same problems, don't seem to be consistently helping my dd. She wants them to look deeper.

[Tiramisu]

It matters because we are still actively seeking treatments for her symptoms which they are assuming are related to post concussive syndrome. If they are being caused by CM then I would want to know that. She is on medication (depression and headaches) and I am not sure if that would change if CM was added to what might be causing these symptoms. I don't want to wait another year to have this info since she is still really struggling, not even doing full time homeschool. I don't know what path I would choose if CM is playing a role here and I can't even go there yet and think about all that. It could be nothing. If she were symptom free then I could wait. Even the CBT therapist keeps telling me to keep pushing for answers. She has said that the "normal" treatments and things that she does with clients with the same problems, don't seem to be consistently helping my dd. She wants them to look deeper.

 

Off topic, but my 8th grader had daily headaches and some minor visual disturbance when reading. We recently had an OT eval because I am seeking to get authorization to get therapy at a place that offers Interactive Metronome to try to help her ADHD. After the eval, the OT said that my dd seems like one of her concussion kids. She had a CT scan after a head injury when she was five but no MRI. And I never really thought much about her concussion until the np and the ot brought it up.

 

This just made me think that your dd's CBT therapist  is on to something. My mom who is a therapist is wondering why my dd's therapy doesn't seem to be working after nearly a year. The therapist also mentioned that dd isn't like one of the typical kids she sees for her issue.

 

So many things can come into play and the hope is that if you can figure it out somewhat, you can get more effective treatment.

[fourcatmom]

Off topic, but my 8th grader had daily headaches and some minor visual disturbance when reading. We recently had an OT eval because I am seeking to get authorization to get therapy at a place that offers Interactive Metronome to try to help her ADHD. After the eval, the OT said that my dd seems like one of her concussion kids. She had a CT scan after a head injury when she was five but no MRI. And I never really thought much about her concussion until the np and the ot brought it up.

 

This just made me think that your dd's CBT therapist  is on to something. My mom who is a therapist is wondering why my dd's therapy doesn't seem to be working after nearly a year. The therapist also mentioned that dd isn't like one of the typical kids she sees for her issue.

 

So many things can come into play and the hope is that if you can figure it out somewhat, you can get more effective treatment.

 

It is like putting a puzzle together. I have found that getting pieces of info from the testing has helped and I am really anxious to see what all the testing reports show. I am wondering if they will help fill in a few more pieces as to if this is PCS or something else. I would hate to have her on depression meds (which don't consistently work) if she doesn't need to be. This is her 5th anti-depressant since March. Maybe there is another reason why she is feeling this way and maybe some of the symptoms are the same as depression but maybe the treatment plan would change. Anti-depressants and CBT therapy is not consistently working.

[fourcatmom]

I have read in several places that the function of the cerebellar tonsils primarily deal with storing and forming emotional responses. And have a connection to the sense of smell. I find that very interesting. Right after the accident I had posted that my dd lost over 20lbs due to a lack of eating which was a result of the lack of smell. They even put her on medication to make her eat. She said nothing smelled good anymore.  I have also heard that the cerebellar tonsils have to do with memory.

[thowell]

I do not have much to offer but to say that I can completely understand how you feel. Dd12 has been dealing with very painful neck, headaches, constant nausea, loss of vision and now depression on and off since 2009. She has had multiple MRI's x-rays, ct scans and blood work and nothing shows up. I know how frustrating it can be to not know what you are dealing with. I also know that having to deal with constant pain can definitely cause depression. My dd was a happy healthy child before all of this started. She stayed happy for the first part but is now emotional worn out. I have recently found a physician that deals with functional Medicine that we will be consulting with. I wanted to give you another forum that is specific for individuals dealing with issues such as these. It has been a huge help for me. I wish you and your daughter the best!!

 

http://neurotalk.psychcentral.com/index.php

[Ottakee]

My daughter with Chiari I is on Lamictal for her headaches....which is a seizure med....which also addresses mood, eao depression. Might be worth asking the neurologist about if anti depressants aren't working and she has headaches as well

 

 

My ds takes a very low dose but it has been very helpful.

[fourcatmom]

My daughter with Chiari I is on Lamictal for her headaches....which is a seizure med....which also addresses mood, eao depression. Might be worth asking the neurologist about if anti depressants aren't working and she has headaches as well

 

 

My ds takes a very low dose but it has been very helpful.

 

Thank you. You are actually the second person that has recommended that. She has been on most of the meds my dd has been on (she's an adult) and this is what she takes now. She was refusing to take her meds yesterday saying they are not helping so I am guessing I will be asking for a change soon anyways.

[fourcatmom]

So I have been doing a lot of work on getting my dd into the right doctor and part  of that has been from some other informational boards on FB that deal with these issues. I am more concerned then ever. I did finally get an appointment for dd with a neurosurgeon but its not until the end of February. I also contacted another NS that is about 2 hours away from us that is a specialist in CM and I found out that I can self refer her there. I am sending off her images tomorrow along with a letter. They are suppose to be getting her medical records. They want to review everything before they will make an appointment. They have also told me they can get her in before the other appointment.

 

As I was writing the letter to the doctor I noticed a comment in her psycho educational report about the brain MRI she had in 2013. It was a comment I never saw. It said, "there is crowding at the level of the foramen magnum with very little CSF identified posterior to the cerebellum at the level of the foramen magnum, but no evidence of cerebellar tonsillar ectopia." That sounds to me like even 3 years ago they had evidence that her flow was compromised. I remember that appointment so well because they did the MRI due to the double vision, headache and pressure. And, yet the doctor made a comment on how many time I had looked at her file online, like I was a crazy lady. No, I was trying to understand the findings. He told me she would never need follow up. I have also started thinking about the weird and miscellaneous problems my other dd has had and I wonder this could be the underlying problem to many of them.

 

I have posted a few pictures of her MRI online and 4 to 5 people (in different groups) all had the same thing to say. I realize they are not doctors but as Moms and patients we tend to learn a lot about the things we are going through. So it does make me wonder.

 

I just can't seem to get her in fast enough and that is so frustrating to me. The wheels turn so slow.

[Tiramisu]

I hope this new place can help you find answers.

 

I don't like that statement from that p**py doctor about the number of times you accessed her account to look at the records. Yuck.

[fourcatmom]

I hope this new place can help you find answers.

 

I don't like that statement from that p**py doctor about the number of times you accessed her account to look at the records. Yuck.

 

I know right. We never went back to him and that was three years ago. He did nothing for her but he did ignore the low CSF which really pisses me off. This is my kid's brain we are talking about. This is her life. Who knows what different choices we would have made three years ago if we had known this information. Perhaps she wouldn't have been riding horses if we had known. Unreal.

 

I have been told that a radiologist is not required to report it as Chiari unless the herniation is 5mm or more. Doesn't matter that the flow was restricted. Something has to change if that is how people are being treated. This brain disease/disorder what every you want to call it needs more attention and more research.

Edited January 25, 2016 by fourcatmom

[geodob]

Fourcatmom,

You wrote that their is: 'there is crowding at the level of the foramen magnum.'

Along with the 'low CSF'.

Which are the real issues.

Though perhaps you could try to imagine, and think about the connection between the top of your spinal column, and your head?

Where all of the connections between your brain and your body and head, pass through this area.

 

Foramen, means 'opening'.

With Foramen Magnum, being the hole at the bottom of our skull.

Which all of the connections pass through.

As a comparison, you might think of your local telephone exchange building?

With the building as the brain.

Then the building will have an exit point, which all wires pass through, and connect to the whole community.

 

So that what we are talking about, is this exit point, where the brain connects to our body, and head muscles.

Though it is not just our 'brain wiring' that passes through this 'opening'?

As the brain is constantly washed, by what is called Cerebro-Spinal Fluid, CSF.

Which is pumped, with every heart beat.

 

But what this comes to, is where the opening/ Foramen Magnum isn't large enough?

While this limits the space for 'brain wiring'?

It also constricts the 'pipe' for the Cerebro-Spinal Fluid.

Similar to 'standing on a garden hose'.

What this causes, is a swelling at the point of constriction in the Foramen Magnum opening !

 

This Foramen Magnum opening, isn't smooth like the inside of a tube?

Rather, it has some 'bony projections', a bit like fingers.

Which are termed as 'Tonsils'.

Where the pressure from the constricted CSF tube', can press against Tonsils, and push them into the 'opening'.

 

The critical issue, is that this can exert pressure on some 'brain wiring', and disrupt connections.

Where the radiologists report that it isn't Chiari 1, unless the herniation is 5 mm or more?

I would quote: 

'Herniation of the tonsils is often measured in millimeters (mm) below the foramen magnum. The classic definition of Chiari I is herniation greater than 5mm below the foramen magnum. However, the size of herniation seen on MRI does not closely correlate with symptoms. Someone without herniation may have severe symptoms while another with 20-mm herniation may have no symptoms.'

 

Where you wrote in regard to the radiologists report: 'Doesn't matter that the flow was restricted.'

What this ignores, is the effect of the 'swelling', on the nerves in the area of the swelling?

[fourcatmom]

I understand all this. I am upset that the did not reveal this part of the report to me. I just found it and it's from 3 years ago. I am very upset. It should matter that they flow was restricted and what comes along with that, like the swelling and pressure on the nerves.

 

They are real issues and they ignored them.