......And a few other places as well!
The picture above is that of an average brain, brain stem and cerebellum. You can see the structures clearly marked above.
Now.... Here's mine below....
Did you ever wonder what's going on in someones head? Well, here's what's going on in mine!The term used by many Chiarians (people affected by Chiari Malformation) is "too much brain to contain". That's how I'd like to look at it too!
If you look at my brain stem and cerebellum, you can clearly see my cerebellum is down into my spinal cord/column touching my spinal cord and squished up against my medulla (Thank God it's not in my a_ _ or some other place some men are accused to keep theirs! ;-). It looks just like a plug, and in fact, is acting very much like a plug, preventing cerebral spinal fluid from flowing freely around my spinal cord and brain posteriorly. I also have crowding of the structures, especially the cerebellum (hence the term "too much brain to contain"),. During this MRI my head was tilted back to the point that I felt as though I couldn't swallow or breathe well, due to the puny pillow my head was on. If you click on the picture you can see in greater detail how the "plug" is probably preventing free CSF flow. The dark area on either side of the spinal cord is where the CSF (cerebral spinal fluid) should flow. It baths the cord and brain, which sort of provides cushion and protection of both. From my MRI, it doesn't look like there is any room for the spinal fluid to go. If the CSF flow is blocked, it will take the path of least resistance, which many times is into the central spinal canal. This is the middle of your spinal cord. When that occurs, it produces a cyst which is called a syrinx or syringomyelia.
In the pic above you can see what appears to be a cyst. I'm not sure if it is, but you can definitely see the widened central canal when you click on it or enlarge it.Many times, when the cyst widens, it starts to damage and kill the outgoing nerves. I guess I'll find out for sure soon as I will be going to The Chiari Institute. They are the worlds premiere institute in the treatment of Chiari and associated brain and spinal disorders. I'll be there in less than three weeks!!!! Yippeee!!!!!!
I have many of the symptoms such as double vision, "brain farts" (forgetting what the heck I was saying or doing) headache (the name of the headaches I get are "ice pick" headaches), balance problems, diminished hearing, difficulty finding the correct words, chronic fatigue, shooting electric jolt-like pains in my arms and legs and breathing problems, along with others. I think it has been discovered at a good time though.
Although there's no cure, there is treatment. I'm hopeful that they can help me. I was told by Karen from TCI that according to the screening tool, I screened high for Tethered Cord Syndrome. Looking at my old MRI films, it certainly appears like I do have it. It's probably related to my spinal surgery I had back in 2003. My doctor said I had a lot of scar tissue and that that was causing my symptoms. Well, looks like he may have been right!
What is Tethered Cord? It is when your spinal cord becomes attached to the dura of the spinal canal. Some people are born with tethered cords, some develop them from scar tissue or other things. Tethered cord can sometimes cause the cerebellum to become pulled down into the spinal column. The cerebellar tonsils (what the part of the cerebellum that hangs down with Chiari is called) can go back up if surgery is performed to release the tethered cord, therefore stopping the downward pull of the cerebellum.
If that doesn't work, the symptomatic Chiarian sometimes must undergo a procedure called posterior fossa decompression, where they basically open the back of your head up and pare down the skull, and open up the base of the skull to allow for better cerebral spinal fluid flow. Strangely enough, my mother in law had to have this done back in 2001 or 2002. What's the odds of that (We also share the same birthday {insert theme from the Twilight Zone here})?! They also will sometimes place a patch in to keep the tonsils from coming down, and some may also need a shunt/stint to help further with CSF flow. Pretty scary stuff. Hopefully, I won't have to have ANY surgery, but if I had to choose, I'd rather have the tethered cord release over decompression any day!
In the MRI above, you can see the tumor/hemangioma in the upper thoracic region. If you count all of the little vertebrae, it's the 7th one in the picture that looks like a white circle/blob. It is something that is usually followed because they can grow, which causes weakening of the bone and collapse of the vertebrae, which happened to a friend of mine (Janice).Mine is 1cm in size. It appears to be approximately 1/4th to 1/5th the width of the verebrae.You can also see my fracture if you click on the picture above. It's the vertebrae that is second from the bottom. It looks like a darker gray line that starts at the front top and proceeds through the upper middle towards the back. The herniations are in the disks just above that at T 7 and 10. I also have some herniations in my lower spine but I don't have the MRI pics to post as that MRI is old and on film.
The reason I'm posting this is to hopefully bring some awareness and understanding to this and the other related conditions. I have also decided to document the path that I'm on, which I hope will help someone out there. You can't say life is boring!
It doesn't look like we'll be getting to see any sights while we're in Long Island but when speaking with Karen, it appears as though this won't be my only trip there. Maybe next time we'll be able to take the kids and enjoy our stay. We won't be able to take the kids this time because I'll be having MRI's CT scans and X ray testing the entire day the first day there, and the second day will be all day consults at TCI. Dan didn't think the kids would fare well sitting in a hospital all day, neither did I. Oh well.... at least I'll have answers when I leave there YIPPEEEE!!!! I can't wait! I'm afraid of what they'll tell me but at least I'll know. It's better to know the beast you're fighting to better arm oneself! Another good thing is that we're staying at a great hotel so maybe I can spoil myself a bit :-), we'll see. If I have to go back, the kids are coming and maybe we'll take a trip into the city....maybe even catch a broadway show! Manhattan is only 35 minutes away! Gotta make the best of it right?!
Well, I hope I may help someone by posting this. I know it helps me by jotting this down, getting it out so to speak, and explaining this to people I know.
Next time I'll tell you a bit about our new pet Johnny! Not your average pet, for the not so average family!
Take care!
Until next time....
