Tuesday, March 6, 2012

Falling Apart

I have imported this from my other blog...

The post on my SIDS blog explains a lot about what happened last week. I am still in shock. I am out of state at the moment but when I get home I'm going to do what I can. I am so incredibly saddened for the people of my hometown.

I'm getting an insurance runaround at the moment, but might be the first person in history looking forward to getting my brain and spinal cord operated on. I've heard the whole spiel about your body failing you, but only now do I understand it. 

Starting with my head...I now have a dead spot on my right eye. I have some sight in it, but there's a big spot that's just blurry. It makes seeing very difficult. I know this is from the fluid and pressure because the rushing, pulsating sound in my ears is a sign of that. Hearing has become difficult. The pain in the back, left side of my head is burning when it's at its best, throbbing when it isn't. The dizziness and vertigo make it hard to walk down stairs. I am losing depth perception. 

The stiffness and pain in my neck make it hard to move. When the pain that radiates down my left arm is bad, I can't deal with it. When it goes numb and my hand forms into a claw, however, it's far worse.

My back pain reminds me of labor. Sometimes, it's shooting pains. Other times, it's spasms. It always aches. When it's not really painful it goes tingly and numb and for that reason I get terrified. Paralysis is a huge outcome of syringomelia if you don't address it in time and ever time it goes numb I"m afraid it might have finally passed the point of no return. Obviously, it hasn't and I am okay but it still scares the hell out of me. 

Then, there's the digestive issues. I'll eat and feel fine. Then, we'll get in the car. A little while later I'll get it with mind numbing cramps that will make me break out in sweat and sometimes tears. Pete or Mom will have to find me the nearest bathroom. it doesn't always happen but it's made me leery of eating out in public. Sometimes, the cramps are so hard that I vomit. 

The pain continues through my hips. It hurts to stand for very long, it hurts to sit, and lying on my side is almost impossible. The best position is flat on my back but who the heck wants to spend all day like that?

Standing isn't great anyway thanks to the weakness in my legs. I'm afraid to carry Iris for long because sometimes they buckle. 

All of that might be able to be dealt with if it weren't for the memory issues. There are literally times that I ill be sitting in the living room and have no idea where I am. I'll see my walls and things and none of it will make sense. 

This is not a fun way to live. It makes me an awful parent and spouse. My quality of life is slowly dwindling. I have met others who have these problems (Chiari Type I and a syrinx) and we all have similar issues. The surgery itself is not a cure, just a treatment that will help the symptoms. Death rates with the surgery are high. In some cases, not having the surgery will cause death anyway. (Because of the spinal cord issue.)

There are days that I really question what I am doing. On days that I am having a pretty decent time I try to do as much as I can. I go for walks with Iris, play games with Sam, and try to clean. 

The list of things I can no longer do (even with the surgery) is long and depressing. Goodbye rollercoasters. 

I am also angry. I am angry that my symptoms have progressed to this point because I was misdiagnosed so many times. I am angry that nobody ran a test in the past 10 years and just assumed that it was stress or anxiety. I should NOT have given birth vaginally. No wonder my pregnancies were so hard. This has complicated my life in so many ways and we just didn't know I had it. A simple MRI would have shown it immediately. I am thankful my doctor finally listened to me and put all my symptoms together. I just wish it had been earlier. 

I am not looking forward to shaving my head. I am not looking forward to spending so much time in the hospital. I am not looking forward to the recovery time. I am not looking forward to having a zipper up the back of my head. 

But I am definitely ready for a change. 


  1. Oh God Rebecca I had no idea things have gotten so bad! I'm so sorry to hear all this. I wish you and your family all the luck in the world and hope your surgery goes as well as possible!!

  2. Thanks. I am very lucky that my friend Marcy has been through this before and can commiserate with me and patiently listen when I call her or write her, hysterical, when something else goes awry. I had no idea there were so many symptoms with this. Most documents list at least 40. If the surgery can alleviate even half of those I'll feel a lot better.