Wednesday, July 3, 2013

Not doing so great....

Many of you have been following my journey since the beginning and know that I have not had the surgery and have been putting it off for as long as possible however I have the dreaded feeling that I am getting closer to the inevitable. I have been having more and more drop attacks. 5 or more a day. Yesterday I had a terrible headache which of course causes more attacks for me. We all know that this is unlivable! Plus I feel like my memory is getting more and more sporadic. Last time I went to the dr in December I was great! Amazing how in just 6/7 months things can change so drastically!!! UGH.... Thanks for letting me vent!

3 comments:

tbn27 said...

I was diagnosed a few months ago after a year of medical tests starting with my heart and ending at a neurologist. I was diagnosed at 16 and I am 17 now. I do understand the dread of surgery. I just hate all of the medicine I am putting in my body. It scares me, but surgery is not an option. Any advice on dealing with the symptoms or emotions that comes along with living with chiari? Its so hard because no one understands something they've never heard of. Thank you so much. I love your blog!

Adrianne said...

Hi and welcome! I understand your fear of the medicine ruining your body! I get my liver tested yearly! Make sure you do as well. The thought of the surgery scared me too! That is why when the first NS said surgery I ran for the hills and found a second opinion who said that I didn't have to have surgery until the symptoms outweighed my quality of life. I then found the right meds for me. Lots of times I don't tell people what I have until I absolutely have too!! FB has been a huge help as well all the CLOSED chiari groups are HUGE help!!!

Azrah Osman said...

Hi, I'm 21 and I was diagnosed with a Chiari Malformation & Syringomaelia in February this year. I've had my surgery a few weeks ago and all I can say is, give yourself time to accept your condition and grieve so that you can go in feeling positive!

Thank you for the informative blog, Adrianne! & for sharing all of your thoughts