Well....

I had my neurosurgeon appointment yesterday. And like my PCP had thought I have Chiari Type 1 Malformation. And basically that means my cerebellum sits to low in my skull and it pushes on my spinal cord and also messes with the flow of spinal fluid. My herniation is around 7mm. Anything over 5mm the course of action is surgery. I am now schedule for Subopcipital decompression surgery on May 7th. The surgery entails the dr removing a 2x2 inch square from the back of my skull as well as a C1 lamenectomy, the removal or partial removal of my 1st vertebrae on my spine.

The surgery will take about 6 hours and I will be in ICU over night, then I will be in the hospital for around 4 days. I an unable to go back to work for a month and unable to drive for at least 2 weeks.

I am working on getting a 2nd opinion, but wouldn’t you know it all dr. close at noon on Friday. Everything I have read online shows the same thing and that this dr is not too off on his diagnosis. Please pray for us, me Travis and the boys as you imagine Travis isn’t taking it too well and I am scared to death.

I have an appointment!!!

I have total mixed emotions about this. I am very nervous about tomorrow. What will he say, what will he do? I have to take my films from the MRI with me so he can discuss them. Weird because I thought he already had them.

I am excited because I hope this means I am on the road to pain relief.

The appointment is at 8:30 tomorrow and I hope to come back with a great update!

Yesterday was bad!

I had been doing so good since the diagnosis. My headaches were there but totally managable. I hadn't had any of the pain/stiffening in my legs after getting up to walk.

But yesterday holy cow! Everytime I stood up to go to the bathroom at work, which is alot because all I drink is water (ALL DAY LONG) by the time I was halfway there I would literally have to run in fear of fainting. I would hurry into the stall just so I could sit on the toilet and put my head between my legs. One of the symptoms of CM1 is fainting. Which before being diagnosed was easy for me to do.

I also had a ton of pressure in my head and neck, by the end of the day as I tried to drive home from work I had the hardest time just turning my head to change lanes, it hurt my eyes and neck so badly.

Diagnosis

I was diagnosed on March 22nd with Chiari Malformation Type 1 (CM1). I had been having headaches that were pretty intense since Logan was born but they have just continued to get worse and November I went to the ER because I was in so much pain.

They did a CT Scan at the time and told me it was a tension headache, gave me some hydrocodone and sent me home, they also said to see my PCP.

4 months later I finally saw my PCP, who after I told all my sypmtoms to, thought that I had some sympstoms of MS and had me get a MRI. He said he was being more proactive than anything, he didn't feel that I had MS but he wanted to be totally sure.

Well he was right, I didn't have MS but I do have something wrong. Scary as it may seem it is a huge relief to know that there really is something wrong with me and it isn't all in my head (metaphorically speaking).

Now I am just waiting for the neurosurgeons office to call to schedule an appointment to discuss further our plan of action.

New Blog

I have decided to create a new blog that focuses strictly on my new diagnosis. I am going to use this to catalog symptoms and my everyday emotions of dealing with Chiari Type 1 Malformation.