I am feeling a little better since my last post. My head still hurts every day. My back is really bugging me where I had the spinal taps. I am not sure if that is normal. It feels really stiff in those discs when I attempt to bend over. Believe it or not-I called my surgeon 2 days after my ER visit...they have still not returned my call!!! I haven't made that easy for them either. I have called there at least a handful of times since then and left nice messages and mean messages and "you have got to be kidding me right now!?" messages and still nothing. This is frustration on a whole other level. I really like him as a doctor but if he can't return a call do I really want to count on him to cut my skull open and follow through with all of the care that comes after that?
It is so frustrating to find a doctor, I don't really want to start over. I had a hard enough finding him and I am still struggling to find a Neurologist who will treat me with pain management. I have actually been told that they don't treat CM/SM because they are "surgical only." Anyhow, the stubborn side of me wants to tell the surgeon to take a hike but the other part of me was really counting on him to help me. I just wish I knew what the future held.
One other new thing that has started is this bizarre crawly/tingling sensation that runs from the top of my head on the left hand side and down my cheek to my jaw. It comes and goes but it sticks around for a while. After ten minutes or so if just feels numb. You would think that would trigger a phone call back from the doctor but it has not.
For now, I am going to promote this month of awareness and hope I can make it through October before deciding on a Surgeon/Surgery/etc. My family and I are taking a trip to Disney for Halloween. I need this vacation more than even I know. After that I will give into this Chiari/Syringo beast. Until then I will kick and scream through it and think about the consequences later.
Hi Kelly :)
ReplyDeleteMy name is Claudia De Mauro. I am a fellow Chiarian (II) with Spina Bifida, Hydro, TCS, 43 suergeries, etc, etc .... First off let me just say have a wonderful time in Disney! Good for you!!! As someone who lives daily with the challenges of Chiari as well I am hoping you will have a chuckle when I say "just please stay away from the TeaCups!" LOL ;) ... been there done that one :/ ... wasn't pretty. I think your perspective on blogging is awesome. yes, even if just one person reads a post and says like you said you have (and I as well) "Wow - someone gets it" - its worth taking the time to blog. Even though we all know everybody's journey can be so vastly different with Chiari, I understand the fears, the inner battles with going to the NS, etc...I happen to be in that very place myself as I write this. After 43 surgeries...I'm kind of wanting to be....well....done with the whole 'surgery thing' :/ ... I'm 41 yrs old now and was blessed enough to go most of my life with a very inactive Chiari...until I reached my mid 30s...different story now. It's all too easy to feel alone on this journey....especially when you have to struggle with even connecting with the right doctors let alone deal with whats ahead for any of us...our experiences are different...but I still get it...and I just wanted you to know that your post was read and reached by someone who truly appreciates what it takes to blog through this - even on the days we don't want to....Chiari has tested my faith in ways I didn't know was even possible but I too blog all in an effort to try and find purpose in the pain...it is in fact therapy for my soul. Anyhow, thank you for your blog! I will continue throughout the week to browse your posts and backtrack a bit. Blessings, Claudia www.untilirestinhim.com