Please bear with me while u read this. My thoughts don't flow as well as they use to and even when my thoughts finally flow sometimes my hands don't seem to do what they are told to do by the brain. Nor does my mouth for that matter.
I guess I should start with my name is Melissa. I'm a 36 y.o mother of three, married to a very understanding husband. I was working a an ICU and ER nurse but had to stop because of this disease.
My story starts in 2004 when I started having really bad headaches.... ones that never really went away. I had dizziness, vision change and had bouts of nausea. I knew something was wrong but put off going to doctor. You see I am a nurse and right away I was thinking it was something really really bad like a tumor. Anyway I did go see a neurologist ( we will call him neuro #1) and he did ct and said it was just a migraine. I disagreed with him but he said no just meds... i looked at my ct and didn't see a tumor so for 9 months let him try med after med on me... with none of them working. One of them even caused heart damage. Nice huh.? So after that I asked for my ct films and said i was going to see a diff doctor and he said well ok maybe we should try one more thing because he did see i had a Chiari Malformation.... but he didn't think it was the cause of my headaaches. So bear with me here.... and my sick humor..... my brain is squeezing thru my skull and thats not the cause? ok. So i went to see Neuro #2 and he said yes my headaaches where from my Chiari and sent me to a surgeon.
Begin of 2005 had decompression surgery for my Chiari Malformaion. Went well. All symptoms went away for about 4 months!!!!! If only that were the end. Headaches came back. Very similiar type, more nausea and balance problems. Went to surgeon who did ct and then did first spinal tap. We did the medication until the pain was so bad and my eye sight was getting worse. I had my first VP shunt placed in 2005.


Because my eyes are getting tired and my head hurts, I'm going to shorten this..... to date I have had a total of 7 shunts.
When I was first dx I spent alot of time online then I got away from it. I am so glad I found all of you now... look forward to getting to know you.

Take care, Melissa

Hi Mel and a very warm to the group. You've been on quite a journey with this haven't you , and I sympathise with you haveing to give up work, I too worked in the medical field and had to early retire after having sub temporal decompressions. It must and probably is, still very frustrating for you especially as it took so long for you to be treated accordingly, and being a nurse probably more so. How have you been since your latest shunt was placed and how is your vision now?

I'm so glad you found us, and I too look forward to getting to know you too, and hopefully we can give you some good advice and support that qill help you trememndously.