I wanted to share this, not because I want to spread spirituality to everyone...In my case though, I really think I was being watched over and taken care of in this long battle. I hope this gives some people hope, and those that do believe in a higher power, I hope it lets you know that we are not alone through this trial.
Last semester in my clinical neuropsychology class, I was assigned a topic to give a presentation on at the end of the semester. This presentation was going to count for a third of our grade. The topic I was given, was one I had never heard of before...it was Chiari Malformation. I started studying the topic in March of this year. I learned everything I possibly could....all the while I was experiencing severe symptoms that were Chiari related. The funny thing though, was I never thought that I could have this issue. I always thought that my symptoms were hormone related, even though they continued to get worse as the year went on. I did my presentation on April 17th of this year (got 97/100)!
When I finished the semester I went to my PCP and talked with him about my migraines and other problems. He put me on topomax and Imatrex, but as I was leaving his office, he asked if I wanted a CT scan to rule out any other possible issues. I said that might be a good idea. (I really just wanted to see what my brain looked liked.) The next day, he called and said it looked as if I had a disorder called Chiari Malformation. He asked if I had ever heard of it before. I told him I had, and could probably educate him on a few things. I then had two MRI's (they found a syrnix.) This happened on May 15th. I had an appointment with my neurosurgeon on June 11th, and had decompression on June 22nd.
I still struggle with some headaches and neck problems, but I am getting stronger every day.
I know that some struggle with this disease their whole life without being properly diagnosed. I am grateful for the knowledge I had before getting treatment. I truly believe someone was watching over and preparing me for what I needed to do, even though I didn't know it at the time.
Wow....gives me chills. God is so good :) Most of us are able to diagnose ourselves LONG before the Drs can/will. I am one of those. Trying so hard to be patient and believe that God's timing is perfect and He will get me to the right people before it's too late. The waiting is so hard though. I would be so grateful to have my "journey" move as quickly as yours did. I'm so glad that you are on the mend. Thanks for sharing your story and giving us hope!
That is remarkable, you must have known that something just was not right. I am a nurse and have had differend symptoms for years but always found excuses for all of them.....in a way i am glad since i have a passion for horses and my family won't let me ride anymore until i am " as they call fixed". I am glad you are getting better.
I never knew what my herniation was...guess I never bothered to ask, but have my follow up this Wednesday with my NS, so I am going to ask him what it was. I was in a lot of pain...and I was going down hill so fast...I will let you know when I find out this week!
KnightRobby said:
Wow, that is an amazing story. By the way, nice score on your presentation. Knowing about Chiari before getting diagnosed is really quite incredible.
Can I ask how bad your Chiari is? What is the drop or herniation in mm's? If you could let me know, I'd really appreciate it.
I really believe that it was. I was really grateful for the information that I learned before going in. Once before I was officially diagnosed I "entertained" the idea that maybe I had Chiari..but then brushed it off as me being a hypochondriac....I REALLY did think it was all in my head! I was so glad that I had a husband who kept pushing me to go to the doctors to find out what was going on....family support is so important in this battle.
God is good! I know that all of this can lead to depression, and doubt and definitely frustration, but I like to think he is on our side. I hope you find the help you need SOON! Di said:
Wow....gives me chills. God is so good :) Most of us are able to diagnose ourselves LONG before the Drs can/will. I am one of those. Trying so hard to be patient and believe that God's timing is perfect and He will get me to the right people before it's too late. The waiting is so hard though. I would be so grateful to have my "journey" move as quickly as yours did. I'm so glad that you are on the mend. Thanks for sharing your story and giving us hope!
wow what an awesome story i had something happen to me just b4 my dx that i kniw was God preparing me as well. i was being treated for a year for bone spurs in my neck but pain in neck progressed to back of head, then numb hand, and oter symptoms started showing up. it was actually my chiro who ordered a cervical mri to see if spurs were worse. the day beforei was to get the mri report, i was in church praying when i got an email on my phone. it was a caringbridge notice about Liam, the 3 year old gandson of a good friend of mine. Liam was having surgery for chiari and his mom had started a caringbridge to keep everyone updated. she explained in great detail his condition, chiari, the surgery-everything. i read it all; i had never heard of chiari, and needless to say, said a lot of prayers for Liam. the very next day the doctor sat down w/my mri report and astonishinly told me i had chiari! i immediately knew God had prepared me for this information.
thank you jetnuey for sharing your story. my surgery is scheduled and your post reminds me that God watches over me from thebeginning
Thank you so much. I'd really appreciate it if you can let me know if you have borderline Chiari or how big/small your herniation is. I wish you the best of luck!
Jenutny said:
Robby,
I never knew what my herniation was...guess I never bothered to ask, but have my follow up this Wednesday with my NS, so I am going to ask him what it was. I was in a lot of pain...and I was going down hill so fast...I will let you know when I find out this week!
KnightRobby said:
Wow, that is an amazing story. By the way, nice score on your presentation. Knowing about Chiari before getting diagnosed is really quite incredible.
Can I ask how bad your Chiari is? What is the drop or herniation in mm's? If you could let me know, I'd really appreciate it.