Stryder had several things done:
- Skull-C3 fusion.
The surgery day was the best of all of the days. I was at peace during the 8 hours, but it was the days after that were hard. Stryder had to have a blood transfusion, which we didn’t expect, and he couldn’t walk for days. They even told us that he may never walk again and they were getting other services ready in case. We had to stay extra days and they even wanted us to stay longer. By the 5th day, Stryder walked for the first time and we left the hospital that same night because our flight out was the very next morning.
Skype consultation with Dr. Rekate at The Chiari Institute (TCI): He was very nice and loved talking to Stryder and Keebler. He said the same thing we have heard many times over: Stryder is very complicated! As I have mentioned before, Stryder not only has Chiari, which can be pretty scary in of itself, but he has extreme Cervical Instability making his brain stem kink. Usually surgery is critical and immediate when a kink is less than 125 or in some 135 and a Grabbs Oakes score is over 9mm -Stryder’s Clico-Axial Angle was measured by Dr. Rekate at 115 and a Grabb Oakes measurement was 9.5; it is a critical and unsafe. The Dr said that he absolutely cannot have Chiari surgery without a fusion and some other things taken care of and it’s an extremely dangerous surgery.
CHIARI – or Arnold-Chiari Malformation Type 1
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.
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.
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.
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
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.
Stryder’s bulge is at C3-4
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.
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.