I have been telling everyone for years I have Chiari Malformation (CM)... & in December some doctor had the nerve to tell me that I did NOT and that my symptoms were only because I had done the research about CM & that I was only "imaging it all". WHAT A LOAD OF HORSE MENU!! *grins*... (I tell ya, I try my best not to swear!) 
What he didn't know, forgot, or just seemed to ignore is that I've had these symptoms LONG before I knew I had Chiari Malformation.
On March 19th this year (2010) my symptoms escalated (on the way to dinner with my mom & sister to celebrate my 41st birthday!)... to make a long story short... I used to not get car sick... well, this day I did... and in a major way. Felt as if I was going to pass out & the pressure was horrendous.
Here I thought the extreme pressure I felt on the airplane to Arizona (last April) was awful... this time it seemed worse.
Ever since March 19th... things have just gone down hill.
So much that I finally, upon recommendation from many Chiari friends, called
Dr. Di's (pronounced DEE, not Dye. *Whew & giggles*) & set up a consultation... that was this past Thursday.
During this visit, he confirmed, (WOO HOO) what I already knew... I do in fact have Chiari Malformation! WHAT A RELIEF to know an expert in CM sees it!!
Well, then he proceeded to tell my mom & myself that they're already scheduling into September... however, he wants to get me in sooner than that... Soooo... my very 1st (& hopefully only one) decompression surgery is scheduled for June 25, 2010! (Barring any problems with insurance & any complications.)
Dr. Di said if I have any more syncope (blacking out) and / or seizure episodes that I am to get to the local ER (about a 1/2 mile away, thankfully!) Once he's notified, he may insist & schedule my surgery much sooner. (Praying that doesn't happen!)
So, yes, it is all in my head... but it's PHYSICAL, not mental!!!... AND I have proof now... The MRI picture above is from a scan I had in 2000... the line shows where the brain (cerebral tonsils SHOULD stop)... this is how they determine it's Chiari... and it's how they estimate the herniation length. This image is a little misleading in a few ways...
1. The line (drawn in 2000 by the doctor reading it) is a little low in it's angle... which would mean the tonsils are herniated more than originally thought. (We'll get the accurate length from Dr. Di after the surgery) At the moment, it's estimated at 5mm.
2. This, I believe, is a left side view... & per Dr. Di... my right side is worse. (Which I had a hunch!)
3. It's quite possible that it may be worse than it was back in 2000. But, that is here nor there!
4. It's a known fact now that Chiari experts are more worried about the width & not the length... also, how much is it blocking the patient's CSF (Cerbral Spinal Fluid) from flowing as it should!!!
This is such a HUGE relief for me... in many ways. Mainly because it confirms what I already knew... & also that I know there's an end in sight now... an end to my suffering... or at least to make it more manageable.
I invite you to follow my progress on Facebook. I have an "event" set up where my friends & family can post (if they want) messages of comfort; encouragement; support; prayers; & all around goodness... If you'd like to join this & you're not connected with me, already, on Facebook... leave a message below & I'll send you the PM with the details.
Along with messages of updates & etc... I'm going to hopefully use it to post notes of what I'd like to do after recovery & other things like that!!!
Those of you who are already connected with me on FB... & would like to be invited to this "event" and don't see an invite... let me know either here or on FB & I'll send you an invitation soon as I can.
By the way... if you did not know... being invited and "attending" this event (via Facebook) does not mean you'll be there at the Cleveland Clinic... It's just so that you can receive updates & posts by myself (and / or my family) about my upcoming surgery... and the recovery.
I'd like to try to keep it all in this one place so that I do not overwhelm those who do not wish to hear about it... AND so that I have just the one place to update. (Make sense?)
I would post a link here to the event... HOWEVER, this blog is open to EVERYONE... & because of that and that my FB page is NOT public... well, you get the idea! :)
That's all for this trip, on The Rambling Train. Take care. ~ Toodles! ~
amazing how often we know things.. and it is pushed off by doctors. I actually had one tell me my jaw was NOT locked shut when it was cause I could talk.. I was like excuse me but what does a ventriloquist do?
ReplyDeleteGlad to hear you are finally getting a resolution of the situation. Remember 50% of all doctors graduate in the bottom half of their class...
ReplyDeletedoctors drive me crazy! it took a doctor 7 years before i was diagnosed with gallstones. and by that time it was too late for me to pass them, so i had to have many gallbladder completely removed.
ReplyDeletewhat were the symptoms?
ReplyDeletedidn't know that... don't know if I wanted to know that. *grins*
ReplyDeletei mostly had a lot of pain. the doctors went from to a to z to figure out was was wrong with me. and the pain always seem to be the worst after i ate any kind of fried foods.
ReplyDeleteWell, here's one good thing: I've heard from several people that the Cleveland Clinic is the BEST, maybe even better than anything we have here in St. Louis, and we have some awesome medical facilities here. So let's hope the insurance company doesn't screw you over. The new laws governing their exclusions and stuff will already be in place. In fact, some of it is already in effect.
ReplyDeleteI agree!!! ~ Thank you & *HUGS* ~ :)
ReplyDeleteI dropped in here when I saw Chiari Malformation. I was a Nursing Sister in a Neurosurgical Unit and we operated on patients with this condition in the 80's.
ReplyDeleteBest wishes,hope everything goes well.
That's interesting!!! I bet they've come a long way from then! ... at least I sure hope they have. LOL
ReplyDeleteThanks for the well wishes! :)
Thank you so much for educating me. My friend's son has chiari malformation. I would love to follow your progress on Facebook and share it w/my friend.
ReplyDeleteI'm so glad you've found a wonderful doctor who is finally going to help you through your surgery! He sounds wonderful!
ReplyDeleteDearest Harley.. I am so glad you found a Dr here in Ohio. I just recently found out I have Lyme disease after going around in circles with drs for years. I know how tiring it must be for you. I suffer with severe migraines. My dr (albiet the fact I am on Ohio medicaid) is trying to get me into a dr in MI N of Detroit to an ILADS specialists. Great luck and my prayers are with you. I know how much you have suffered. Love, Hugs, Friendship, and Blessings always, lilangelwolf
ReplyDeleteLil, I'm glad to hear you also have found a confirmation diagnosis. I'll bet it's a big relief to finally have answers! *HUGS*
ReplyDelete