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What I know (today) in Layman Terms

What I know (today) in Layman Terms
June 6, 2014 Stryder's Mom

It’s been almost two weeks since we got the call that scared the daylights out of me, but also was a lifesaver. Since then, I have learned a lot and I’m going to attempt to explain it all here. Please understand I am not a Dr and this is to the best of MY knowledge and what has been told to me by Dr’s, friends and others who are great at reading MRI’s. If you see something I made a mistake on, please feel free to message or comment and let me know.

Also, I am pretty medically savvy and sometimes talk about terms not knowing that others do not have any idea what I am saying, so please ask questions and don’t feel like you can’t approach.

 

Notes

Mayfield Clinic Pic

 

 

 CHIARI – or Arnold-Chiari Malformation Type 1

[pull_quote align=’left’] Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation. [/pull_quote]

There are some Dr’s who do not recognize Chiari unless it is over 5mm, but specialists in Chiari realize that even smaller measurements can have the same or more problems and symptoms. Stryder’s is over 5 mm, but that doesn’t always matter.

You can be born with Chiari and not have any symptoms or you can acquire it. It’s likely Stryder acquired it because of his bad collagen. He had one MRI when he was three, but they were looking for tumors at the time and if he did have Chiari, it may have been a smaller measurement. He has had a lot of progressing problems but another MRI was never ordered and they were all thought to be attributed to his bad collagen.

Individuals with CM may complain of neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected. Symptoms may change for some individuals, depending on the buildup of CSF and resulting pressure on the tissues and nerves. Stryder has every one of these symptoms at one time or another.

Surgery is the only treatment available to correct functional disturbances or halt the progression of damage to the central nervous system. Most individuals who have surgery see a reduction in their symptoms and/or prolonged periods of relative stability. More than one surgery may be needed to treat the condition. In Stryder’s case, he has some in-towing that we hope to stop the progression of as well as several other problems. Surgery will stop progression, but will not usually reverse nerve damage, which stryder has a lot of.

Retroflexed  Odontoid

Mostly what I can find is this is related to “instability” and that it “kinks” the brainstem. The top “bone” is backwards and if you look at Stryder’s MRI, it is impaling his brain stem. Any small rear end in the car or bump on the head can be fatal between this and the Clivo Axial Angle.

One of the other things I have read is that this can be a cause of Chiari and without fixing it, the Chiari will become problematic after surgery.

Clivo Axial Angle

CAA is a sign of cervical instability and I’m still learning on this one too. What I do know is that it Should be above 150 degrees -Below 135 can require surgery in some and below 125 is critical in most. In Stryder’s case, the clivo axial angle measures 108 degrees in neutral position, 106 degrees in flexion and 172 degrees in extension. From my understanding, this is very dangerous and is often mentioned as a kink in the brain stem.

Should be above 150 degrees -Below 135 can require surgery in some and below 125 is critical in most. Stryder’smeasures 108 degrees in neutral position, 106 degrees in flexion  
I have also heard this be called  Basilar invagination –

This is a rare condition. To understand it, it is important to know how the spine works. The spine is made up of 33 bones, or vertebrae. These and the discs between them provide a passage for the spinal cord and nerves. The spinal cord itself connects nerves of the body to the brain.

Basilar invagination occurs when the top of the second vertebrae moves upward. It can cause the opening in the skull where the spinal cord passes through to the brain (the foramen magnum) to close. It also may press on the lower brainstem. The brainstem is a stalk-like part of the brain that connects the main portion of the brain to the spinal cord.

 

 

Here is a video on how surgery is preformed. It’s a little scary, but like it states, the alternative is not living.

CSF Ehlers-Danlos Syndrome Colloquium-Dr. Nicholas Theodore from csfinfo on Vimeo.

 

 

CSF system

Cerebrospinal fluid (CSF) is a clear, watery substance that flows within and around the brain and spinal cord to help cushion it from injury. This fluid is produced inside the ventricles by the choroid plexus and is constantly being absorbed and replenished. The CSF flows through the ventricles and out into the space between the brain and skull (subarachnoid space) and down into the spinal canal (Fig. 1). As the heart beats, CSF flows into the brain. This is normally balanced by CSF then flowing from the brain into the spinal compartment. In a Chiari malformation, this balanced flow is disrupted. The obstructed CSF begins to force its way like a water hammer through the foramen magnum. Pushing the tonsils down even farther, it exerts pressure on the brainstem. The increasing pressure compromises normal functions of the brain and/or spinal cord and a myriad of symptoms occur. Excess CSF can collect and enlarge either the ventricles in the brain (hydrocephalus), or form a cyst in the spinal cord (syringomyelia).

Uneven Tonsils

Uneven tonsils (not the ones in the back of your throat, but cervical, most likely mean that one is wrapped around his brain stem and was pulled down along with the Chiari.

Diffuse Cervical Bulge

[block_quote cite=’-http://www.americanspinal.com/’] A diffuse disc bulge is a condition that affects the discs on the spinal column. The outer covering of the disc tears and the fluid that is contained at the center of the disc starts to shift. This causes the sufferer a lot of pain as well as disability because this condition has adverse effects on the spine. [/block_quote]

Stryder’s bulge is at C3-4

Levoscoliosis

An S-shaped curve described as thoracic dextroscoliosis and lumbar levoscoliosis indicates that there are two curves of which the upper curve is located in the thoracic spine and leans to the right, and the bottom curve is in the lumbar spine and leans to the left. Stryder’s is mild and likely a result of his hypermobile condition.

Pansinusitis

Stryder has severe chronic Pansinusitis. He was diagnosed with chronic rhinitis at the mayo clinic previously and I assume they are related if not the same. I haven’t been able to find a lot of information on this or why Stryder has it so badly, but I think it’s just that his sinuses are plugged.

What’s Next?

I sent in Stryder’s MRI CD to The Chiari Institute in New York to see if they can or should help Stryder. I have found that although Dr. Gilmer in Michigan is a true expert, some of the things, such as the axial angel, she doesn’t always treat and I don’t want to have to change surgeons if we don’t have to. I was told that I would tentatively hear on Monday and that I can email or call the intake person, with whom I have talked to and sent several emails to already and has been a phenomenal help!  She explained that we could be asked to go there within two weeks and also schedule surgery at the same time. Also, she mentioned they may be able to do a Skype consult prior to going.

Stryder’s school and the entire staff have been phenomenal and I am amazed at all the helping hands. Not only them, but everyone who hears Stryder’s Story. We are very fortunate and feel blessed, even in our turmoil.

Please consider donating to help us with his brain surgery or join the fun- and please, please, please pass this along to all of your friends. I know everyone has given so much already, but this is the next chapter in Stryder’s Story and we need your help.

Download the flier here

gold for stryder Dinner with Stryder

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