This was an entry on my other blog...
After being given the runaround by insurance I was finally able to straighten things out and hopefully will be seeing Dr. Tew at the Mayfield Clinic in Cincinnai. We got all the stuff faxed into him today. He is a true Chiari specialist and apparently knows what he is doing.
I was also able to get my MRI disk from the hospital. Here are some of the images from it. What you're looking at is the cerebellum, where it's situated at the top of my spinal column. Mine is very thick and herniated. (Meaning that it sinks down lower than it should.) Some people have very long herniations, like 20 or more.
Mine is not actually that long, but it is thick. It corks me up so that spinal fluid is not able to move like it should. That, in turn, has caused the syrinx (or cyst) lower down in my spinal column.
The reason that it's important to find a Chiari specialist and not just any old neurosurgeon is because a) you don't just want any old person operating on your skull and spinal column and b) there is a lot of outdated information about Chiari and you need someone who keeps up with it. Some doctors won't bother with the surgery unless the herniation is a certain length. It's not the length that always makes a difference, however, but the width that can cause the spinal fluid flow problem.
Chiari symptoms vary. There are several official symptoms that you can find on different websites, but i total there are more than 40 different ones associated with Chiari and even more when you take in the related conditions.
Although headaches are one of the most common, they're not the only symptom. I have been treated for migraines for around 12 years now and no migraine medication (Maxalt, Imitrex, Excedrin migraine, etc.) helped. Chiari headaches are different from even regular migraines.
Balance is also something that can be affected. Running into walls, having trouble with patterned carpet or tiles, and being able to walk down steps correctly (without falling) are all things that some people with Chiari have trouble with.
Nerve pain is one of the worst symptoms. My pain starts in my neck and slowly radiates down the left side of my body. This is not pain that can be alleviated with a visit to the chiropractor or physical therapist (if you do go to one then make sure they have worked with Chiari before) or something that can be easily massaged away.
Along with nerve pain, you might feel tingly or even numb. I get both and they seem to alternate regularly. Weakness is a HUGE symptom and may or may not affect both sides of your body. (I get it on the left side.)
Lastly, sight and sound can be affected. Many Chiarians complain of tinnitus. To me, it sounds like a wooshing sound inside my ears but can also sound like a small owl hooting at times. Again, the left side is affected more than the right in me. My eyesight, however, is worse on the right.
CSF flow is responsible for a lot of the symptoms so it's important that you get a CINE MRI to study the flow to make sure you're getting the right stuff to the right places.
In a previous post, I wrote about my personal symptoms. You can find it here: Falling Apart.
There are many related conditions that you might experience with Chiari. These include POTS,Ehlers Danos, retroflexed odontoid, Tethered Cord Syndrome, and Syringomyelia. You should be tested for all of the related conditions by a specialist to ensure that you're getting the proper care.
I am excited about my visit with Dr. Tew. So, I am on the right track now. If that doesn't work out, though, then I will probably try the clinical try in Maryland.
Here is some MRI information...
This is a normal MRI.
See how the cerebellum is kind of shaped like Pac Man?
Now, this is my MRI.
You can see that my Pac Man seems to have an extra part on it, hanging down. That is sometimes referred to as the "tonsils."
Here's a better look...
The size of the herniation isn't necessarily what makes the difference. In my case, the herniation isn't long but it is thick. This cuts off fluid flow which is really what is causing the problem. Also, you'll notice that different slices on the
MRI show different views so in some the herniation looks bigger than in others.