Friday, March 13, 2015

I'm Back!!!

My last post was in January?? Oh my word!!

I apologize that I have been so bad at posting lately, but I have a really good excuse! In September I found out about a doctor in Colorado that specializes in Chiari Malformation. I did a bunch of research, said lots of prayers, and came to the conclusion that I needed to find a way to get into to see this doctor. I spoke with my neurologist and he agreed to send in a referral for me. Two days before Christmas I received a phone call from the clinic saying they were ready to get me scheduled. I was so excited!! Merry Christmas to me!! They set me up for an appointment on February 10th. 

The month of January was spent getting everything ready for this trip. I had to gather lots of medical records some dating clear back to my original brain surgery sixteen years ago. It was a lot of work, not to mention stress! I also had to do a lot of planning regarding booking a hotel, flights, and finding a rental car. 

Finally the day of the appointment came, and boy was I glad I went. Right from the beginning it was obvious this guy knew what he was talking about. It was so refreshing! We spent three days running all kinds of tests, and meeting with doctors to discuss my symptoms and how it all effects my life. 

In the end they found a few things wrong. One of the tests on my blood work came back pretty bad. They said that anything over a 3 on this test meant that you were at risk for a serious cardiac event, stroke, etc. and mine came back at a 7.5! Not good! He said there could be two possible reasons for that being so high, one would be an autoimmune disease and the other is a condition called pseudo tumor cerebri. He wants me to follow up with a Rhuematologist here in Utah to rule out the autoimmune diseases once I've done that He wants me to get another spinal tap. The only thing is he wants me to go off my medication for it, which is scary. I'll have to go off my meds for a few weeks to make sure it is completely out of my system when I go in for the tap. I don't do well off my meds. The last time I went off of them I was having my pass out/seizure spells on a daily basis. I hate the thought of going off of them again, but if it is what he needs in order to get an accurate reading on my spinal tap then I'll have to. This spinal tap would either confirm or rule out the pseudo tumor cerebri. If it comes back positive then he wants to put a shunt into my spine. If it doesn't then we will move directly to the next option. He found that when I had my first brain surgery they opened up the back of my head too much. He normally removes 30 mm of bone, they took our 54 mm on mine. He showed me on the MRI that my brain is very exposed. I literally have nothing between my brain and my skin, no protection whatsoever. He wants to fix that. He has created these little metal plates that are curved so it would still leave room for my brain, but it would also offer protection from the outside. Then he would pull muscle in and attach it to the plate for even more protection....basically rebuilding the back of my head. It would be a pretty extensive surgery, but he thinks it could really help me. 

It was a wonderful trip. They were able to give me some direction and most importantly some hope. I have been lacking that lately. Either option ends in a pretty major surgery, which is scary, but if it has a chance of making me better I have to do it. The trip was also very exhausting. It took quite a toll on me physically and took a while to recover from it. I'm just starting to get back to a normal schedule and normal health for me. Since being home I have also started on the path of getting appointments with the Rhuematologists so I can get going with this course of treatment. 

So, how is that for a good excuse??

I have started crafting again and will be posting some of my creations for you again soon. In the meantime drop me a message and let me know one thing you've been up to while I've been away. 

No comments:

Post a Comment