The "Answer" ???

The neurosurgeon called today. With my retroflexed odontoid bone/pannus formation being against my brainstem, he is still certain that it's the "Craniocervical Instability" that is causing the vomiting, pain, & worsening symptoms. It looks like I may not be able to put off the fusion for much longer. I was told this years ago, but decided to try & "live with" my symptoms as best I could until there were better options for treating this problem. With the nausea & vomiting getting so much worse lately, the headaches, vision problems, half of my face going numb & the incredible pain that I get... it looks like that is what is causing these & a host of other symptoms. I was hoping that it was just from the added stress of organizing the Chiari Walk. Once the Walk ended & the symptoms continued, I guess I'm wrong. I just wanted an easier answer.

I cannot explain how scared I am. It's not a "typical fusion" as many people have where they fuse just one or two vertebrae and remain able to move with the surrounding joints, this would be fusing my neck to my skull and losing most of the ability of nodding "yes" or "no" with my head. I cannot imagine driving, or putting my head down to help clear my throat when I choke on something. Just scary to think about all of the other things that I may lose. I don't talk a lot about my problems and my fears...but this surgery just seems so scary to me, losing the ability to turn my head (although turning my head is when my symptoms are at their worst), it just scares me so much. But "if" indeed this can resolve the problems that I'm having, I'd do it. The only problem is that there is no crystal ball. There are no guarantees in things like this. I just don't know how I could bear it if I went ahead with this surgery and then woke to find that I feel the same way as I do now.... PLUS not being able to move my head.

The doctor wants me to have some tests first, then do "invasive cervical traction" in the operating room where they can monitor my neuro functions for 1 1/2 hours in there with the traction screws in and get the pressure off of my brainstem to see what effects they can achieve. This will tell them what results I could expect from the fusion. I will also have another MRI while sitting up... to see how much pressure my brainstem is getting from my odontoid bone from the cranial settling with gravity. I first have to have a Dexa Scan to see what my bone density is to see if my bones would be dense enough to tolerate the screws, rods & plates. (I'm hoping that is a sign one way or another)

If we go ahead with the CCFusion, then at the same time he will fix the plate in the back of my skull that has been so painful. Right now I have a hard time using the hard collar due to pain over the plate in my head, but when I do use it, it does help my symptoms, but can only use it for less than an hour. I was hoping that a "halo" wouldn't be needed, but he said that would be a judgement call in the OR, & also depending on the bone scan, but that I should expect it. THAT has been a big worry of mine. Call it vanity, but this is going to be hard enough without looking like Frankenstein with bolts coming out of my forehead. (There would need to be lots of Valium in my future!) Halloween would be over, but if I had it done near Christmas, I could hang ornaments from it??? (UGH)

Well, I do wish now that I'd done this back in 2000, when I was first told that I'd need this, as I'd be all recovered by now, but at this point I'm just praying for a sign as to what to do. So for now I'm going to see what these tests show. I hate to be far from home, but this is where they seem to have the most experience and doctors that have proven themselves to me before. I hope that this is the "answer" already.

Finally 40!!!

Well, here it is... finally... I turned the "BIG 4-0" today! A day that I worried I would not see. My thirties was filled with many wonderful and not so wonderful things. Like especially in my early thirties was spent mostly with me in the hospital, and then later caring for my dying father and grandmother. I had several life threatening problems-- blood infections (sepsis); brain/ shunt infections (meningitis); bone marrow problems, etc... where I essentially "lived" in the hospitals for so long. In this decade I saw my 4 & 7 year old children turn into the now 14 & 17 year old WONDERFUL, compassionate, mature & loving people that they are today! Back then I worried that I'd not be here for them, and for me to see them grow up. And here we are... although this is DEFINITELY NOT ENOUGH... I feel SO BLESSED at this point to see them both in high school, happy, and healthy!

At times my illness consumed me, I just could not get out of the problems that I was having and I focused so much time and energy into it. I saw this illness take my job that I loved and prevent me from working... but I also decided that was not going to be the "end" of it for me... so I found a way to "give back". Working with others who suffer the same illness that I do, I found a way to "make a difference". My story is not done. I plan to be back to work one day... maybe not back in the ICU (but heck, I've seen enough of the Intensive Care Units anyhow!) :) ... but I'll get back there. For now, I am happy being my best friend's wife, two beautiful kid's mom, a friend to all of my friends... and most of all... I'll be happy being "40"!

Thank you to all of my amazing family & friends & everyone else I've had the privilege of enjoying life with! This has been a GREAT 40 years! ...and now I'm looking forward to the next 40!

It's not funny...

Ed and I have always used humor to help us thru this bumpy road. Heck, after leaving the doctor's office (almost 13 years ago) & finding out that I was going to need brain surgery, Ed stopped at a restaurant that we went to often to just "sit" and give it all some time to "sink in", before having to pick up our kids at his sister's house. I had fallen apart in the car, but was able to get it together in order to get into the restaurant. After sitting there, I fell apart again, thinking of my two little ones & the realization that I needed brain surgery. I felt SO afraid & lost.

Ed sat across the table from me in his own disbelief and shock. I stared out the window watching the rain come down, desperately trying to hold back the tears as he held my hand on the table. When the food came neither of us could eat. I just kept tearing up & SO upset & heart broken that our "perfect life" (and let me tell you, we were SO blessed... and still are!)... was going to be turned upside-down. Ed had such a hard time saying anything, but I "felt" his comfort from his hand on mine. Finally, he spoke and with tears in his eyes, he whispered, "Cyn, I just wish it were me". I looked at him, knowing how much he loved me & wanted this to be a dream too, and I whispered back, "me too".

We both laughed and laughed, with all of the emotion of what we had just been thru! It was kind of a release of the weight of the stress. We've always found a way to use humor to help us deal with all of the this. It's always "worked" for us.

However whenever I laugh, cry, bend over, or strain in any way--it makes my head feel like it's going to explode... moreso now. We went to a movie yesterday (Couple's Retreat) for my upcoming 40th birthday... and we had such a good time! It was so funny, but with the laughing came the SEVERE pain my head. Ironic that humor has always "helped", but it's the laughing that seems to hurt me so bad. I really wish that I could just LAUGH again without all of the pain!

Nausea & Pain

I don't know why I'm so nauseated. I just cannot shake this. Between the worsening headaches, face pain & the nausea/ vomiting... I don't know what's going on. I'm looking forward to seeing the pain management doctor this week & talking to the neurosurgeon on Friday. I don't know why the pain has increased so much lately... hopefully he can figure out something that will work better than what I take now. I've been trying to NOT take anything until it's so bad, thinking that the pain meds could be causing some of the nausea/vomiting. I even get car sick while I'm driving. (it's very difficult to stay on the road while vomiting) Thank God for compazine! I now take it before driving or leaving the house.

I have been using my hard collar again to help with my symptoms, but only for about an hour or so at night. If I use it any longer than that it causes too much pain on that area of the plate in the back of my skull that's so sore. The funny thing is that it does help. I don't know if it's due to not allowing my neck to turn, or if it's the raising my head up that helps. Turning my head has ALWAYS increased my symptoms, but NOT turning your head is much easier said than done.

Reason for Blog/ Title...

I decided to go ahead with this blog after our last support group meeting. I again encouraged all to consider creating a blog or "caringbridge page" as many have done. It's an easy way to update or chronicle what's going on... and sometimes "say" the things that we find hard to say about what we're going thru.
For example, when others ask me how I am, I answer (as many of us do), "I'm ok, how are you?" When clearly, I've not been "ok" in quite a while. But it seems a burden sometimes to share too much. Remember that old saying, "misery loves company"... but the truth is that "company doesn't love misery". NOT to say that they don't care, but it's sometimes such a loaded question, and brings such emotion in my heart, that I just say that I'm alright. The truth is that those closest to you already know without asking. And anyhow, we all "look fine" now, don't we?
As for my blog title... So many people call those of us who go thru life threatening health conditions "courageous". Actually, one of the nurses that I worked who saw me (just before my first brain surgery) say, "You're so brave". Hmmmmm... truth be told, I'd have traded places with someone else in a heartbeat! This had nothing to do with bravery, or courage. I'm stuck with this and surgery or "living with" it's effects was just something that I have to cope with. That being said, you do have to hold some courage thru all of this, or else I'd truly LOSE MY MIND!
So the courage that I do have... has been inspired by my loved ones! Thus, "Inspired Courage". I could NEVER (nor would I have wanted to) get thru any of this without you... my family and my friends! You are ALWAYS there for me & I am FOREVER GRATEFUL!