Cerebellar Tonsil Herniation/Chiari Malformations/Tonsillar Ectopia

[AFCFS]

Has anyone had this show up on an MRI? I had an MRI to test for pituitary gland abnormality and while the pituitary was fine the internist picked out Cerebellar Tonsil Herniation. The radiologist either missed it or felt it was not significant as the MRI was ordered for pituitary (go figure). In layman's terms, my brain is too big for my skull. In other words, upright-health.com states:

Tonsillar ectopia, also known as cerebellar tonsillar ectopia, Chiari malformation and Arnold-Chiari malformation, is associated with descent of the bottom portion of the cerebellum into the foramen magnum. In this regard, ectopia means an abnormal location or position of an organ or body part. Hence CTE refers to a downward displacement of the lower portion of the cerebellum, called the tonsils into the foramen magnum. The foramen magnum is the large hole in the base of the skull for the passage of the brainstem and cord.

Of interest is that the The National Fibromyalgia Research Association (NFRA) states: *Chiari I is the type of malformation being discovered in people diagnosed with fibromyalgia and CFIDS (Chronic Fatigue and Immune Dysfunction Syndrom)

It took me a bit off guard and I initially went along with the "wait and watch idea" given by the internist in his 5-10 minute perusal of my brain. After I started reading about it, think I am going to ask for second opinion.

In a projection of frustration to doctors I really do not get it. I have an integrative internist order an MRI and abdominal CT Scan based on blood work that a an endocrinologist would not do (same exact symptoms presented) and a previous internist would not even consider. The integrative internist orders the MRI and CT Scan but the radiologist misses/does not note the Cerebellar Tonsil Herniation (it is not hard to see when pointed out - about 75% of my foramen magnum into the spinal canal is blocked by the herniation - like a clogged pipe).

The integrative internist, upon seeing the Cerebellar Tonsil Herniation, tells me something is wrong very quickly, but then vacillates a bit and says lets wait and see if I get headaches. Forget the cognitive, memory, visual, sleep, sleep apnea problems I have complained about for the last 3-8 months - let's wait and see.

In the space of a 20-30 minute visit I gave way to suggestibility and took the headaches to be the defining aspect, but then a quick Google tells me about the cognitive, memory, visual, sleep, sleep apnea problems associated with it. So, then what, I am running out of doctors but give a call to a pdoc who is evaluating me for TMS (Transcranial Magnetic Stimulation) and leave message to ask him to look at the MRI. Now waiting on that.

I am thinking maybe a neurologist/neurosurgeon should have a look at the MRI, but you can not get to them (at least the ones I have queried) without a referral. As much as I like some of my doctors I think it might get to the point where I have to start to bring up the idea of malpractice to get anything done (e.g. "I would sure hate to be wrong about that.") - I don't know, is that what it requires?

I had previously asked this integrative internist for a neurologist referral to look for MS based on symptoms, but he said the MRI would be able to show signs of that, which was thankfully absent according to him. Just to rattle on a bit, it was another pdoc that had ordered a slew of blood tests and told me my liver was fine, only to find out today, after more tests and the abdominal CT Scan it was a fatty liver. ARG!!!

Here are some more links to Cerebellar Tonsil Herniation/Chiari Malformations/Tonsillar Ectopia if anyone has an interest or may want a doc to revisit/request an MRI:

Brain Herniation Imaging
Chiari I malformation

If anyone else has seen this/had treatment for it, please post.

 

[AFCFS]

Here is another interesting article/link:

Decompression of Craniovertebral Stenosis Leads to Improvement in FMS and CFIDS Symptoms states:

There is a subset of patients with the diagnosis of chronic fatigue-immunodeficiency syndrome or fibromyalgia syndrome who suffer from some element of craniovertebral compression. This is primarily congenital in nature and appears relatively normal unless more highly quantified analysis of the spinal canal and posterior fossa are carried out. Detailed neurological history and physical findings in this group of patients are consistent with a chronic myelopathy. The majority of the signs and symptoms can be reversed in these patients with craniocervical decompression.

 

[alex3619]

Do research this very very thoroughly before being talked into surgery. I knew someone who had chiari syndrome surgery. She was only marginally improved but then was severely anxious that someone might bump the back of her head. The surgery meant her brain was not properly protected from impact. Even a light bump might kill her. That fear was with her all day, every day.

 

[Sushi]

Do research this very very thoroughly before being talked into surgery. I knew someone who had chiari syndrome surgery. She was only marginally improved but then was severely anxious that someone might bump the back of her head. The surgery meant her brain was not properly protected from impact. Even a light bump might kill her. That fear was with her all day, every day.

Yes, there are too many ME/CFS patients who have had chiari surgery and have been much worse afterwards. I knew someone who was left in constant severe pain. There are more surgeons willing to to this surgery than there are surgeons who have a good success rate with it. It is a very tricky surgery. There have been other threads on this here that you might want to read.

Sushi

 

[AFCFS]

^Thanks. I was wondering that myself, if the brain was fully protected after any operation of this sort and also would not want to jump out of the frying pan into the fire, so to speak. I think would like neuro to at least look at the MRI and give an assessment/monitor/be aware of it. I understand there is an MRI cerebrospinal fluid (CSF) flow study is often helpful for determining the impact of the Chiari malformation that may help with a Dx.

 

[triciaruth]

My sister was diagnosed with Hindbrain Hernia and Arnold Chiari malformation in her 30s during 2004/5 and has visual impairment and balance issues along with other symptoms (she thought headaches were 'normal' having had them all her life). She has been offered the decompression surgery on a few occasions but she has not considered it as a valid option and won't until her symptoms become severely debilitating or life threatening.
Check out The Ann Conroy Trust, UK based charity that has amazing support for members and also does a lot with raising funding for research into the condition. http://www.britishsyringomyelia-chiarisociety.org/
Although there is a lot of information available on the internet, I would strongly suggest discussing this with a doctor who has experience with the condition and/or charities/organisations who support those with the condition.
Whatever the outcome, nurosurgery is a HUGE risk for an unknown outcome in the case of decompression surgery.
Good luck.

 

[SpecialK82]

I would just echo what others are saying about proceeding with caution. I know someone who's son has a Chiari malformation, he had the surgery, and his symptoms have not improved. She told me that some improve with surgery and others do not, doctors don't seem to have a clear understanding about this condition.

 

[AFCFS]

Thanks for this info. It has really caused me to take a step back and get a broader view. I have an appointment with a neurosurgeon coming up in a few weeks. I would not mind getting the MRI cerebrospinal fluid (CSF) flow study to further the assessment, but my current thinking is that unless it is truly necessary then wold give it a pass for now. The more I look at all of this type of thing, I see more of a relatedness issue and less of a causative claim. I could be wrong, but that is my current thinking.