John Hopkins Dr. Appt.

Sorry it took me so long to post. I have not been feeling very well. I have a cold and coughing when you have Chiari causing excruciating pain in your head, so needless to say it has been a rough weekend. Anyway, I saw Dr. Rigamonti at John Hopkins on Thursday and let me start by saying that I LOVE him. This has got to be he first Neurosurgeon that I have EVER seen that I actually like. He was very nice, he answered all of my questions without rushing me out the door, and he knew what he was talking about. Being a Surgeon, they normally try to rush you into surgery before exploring other options, but he is not like that at all. He is going to do another round of MRI's. A more in depth series of them that shows the CSF flow, and he also wants to get my whole cervical spine also. He also wants to do lumbar monitor. It is kinda like the ICP monitor they did were they drilled the whole in my head and monitored my intracranial pressure, but he is going to do it where my shunt is at. After we get the results from these two test we are going to sit down and discuss where to go from there. I am alot more hopeful after talking to Dr. Rigamonti, he was defiantly worth the trip up to Baltimore. He did tell me that Chiari 21mm herniation is a very servere hereniation and that decompression surgery may have to be an option, but he would do everything he could to help me. He is even trying to help me out with my insurance situation (my insurance won't cover for me to see him or go to Hopkins) he had someone from his office call me Friday morning to help me with that.
As soon as I find out when I will be admitted to the hospital for these test, I will update the blog again. Thanks again to everyone for their thoughts and prayers!!

Doctors Appointments!

Okay, so I have an appointment with a doctor up at John Hopkins next Thursday, April 23rd. He is supposed to be one of the best. He specializes in Chiari. I found out today that my insurance won't cover for me to go up and see him, but I am going anyway. I am supposed to go to Duke the week after that to see a different Neuro. I figure it is always good to get two different opinions. I will keep everyone updated.
I have not been feeling to well lately. My headaches are back full force and I have alot of muscle weaknes in my left leg. I feel like since he turned my shunt up that I am having high pressure headaches on top of the Chiari headaches. My neck is just flat out killing me. With all the medication I am on I am having a hard time just thinking straight. I hope to get some answers next week.

FRUSTRATED!!!!!!!

I decided to take it upon myself to go to St. Mary's and get my Radiology Report from my MRI. Let me just start by saying that was a BIG mistake. Not being a doctor, I don't know what I am looking at and it scared me to death. First I start off by finding out that I have a 2.1cm or 21mm herniation, okay for those of you that don't know much about Chiari, that is NOT GOOD!! Herniation's range from 6-26mm. Then after I get over that initial shock I go to read on and it says that "There is substantially diminished exta-axial fluid signal in the posterior fossa around the foramen magnum", again not good. Then there is a cavernous angioma in the superior right frontal lobe", no doctor, but can't be good, right? Then as if that is not bad enough "a small mucosal retention cyst in one of the right posterior ethmoid air cells". WOW!!!!!!!
So immedialty I freak out, as I think most of us would do and I called my dad and my Neurologist. I waited ALL DAY to here back from my Neurologist, by thank goodness he finnally called me and basically tells me not to worry about it????????? How can I not worry about it. I have excrutiating headaches, coordination problems, and now I have muscle weakness in my left leg, which at this point I am just dragging around. I just went to my doctor and got more pain meds to cover up all of my problems that I am having, that seems to be the only thing they want to do right now. Don't worry about it and take some pills :) I am in search of a Neurosurgeon at Duke up in Raleigh, NC if anyone knows of anyone. Thank everyone for there prayers!!