Great Trip... Difficult News!

Ed's dad has always told me, "What you worry about most never happens"... and I guess that's true because I never really worried about what ended up happening.

After having a WONDERFUL time in New York with my son, we went to the hospital @ 2pm for the Invasive Cervical Fusion--outpatient surgery. The nurse put me in room "13" ... I joked with my son about the "bad luck" number... that was the first hint that it wasn't going to be a "cut & dry" surgery (no pun intended). As I had walked into Same Day Surgery I ran into Dr. B. There was going to be a delay to get the OR room again for my case. So they finally took me back at around 5:30pm. By that time the spasms in my legs were just horrible, & I hadn't taken my meds that day due to wanting to see all of my symptoms during the procedure. So needless to say, I was miserable by the time we got in there.

I was put to sleep (while they put in the screws), while listening to some of the staff humm along with the radio playing Frosty the Snowman. =) I woke to a nurse asking me to "try to relax my legs" (as the spasms were so bad still). And although I had the apparatus in my head & the pain from that, I still had my headache, nausea, numbness, etc. They hooked up the pulley system to the top of the horseshoe looking metal piece that was attached to the screws in my skull... then sat me up straight in the bed. My leg spasms eased a little bit while sitting up, but still were happening, but then as they added the weights I had NO MORE leg spasms at all. (Fluke? or was this the "answer"???) They added weights and left me like that for a bit of time then logged where my symptoms were, then added the next weights. At 30# of traction my symptoms were the best, when they added more after 30, it wasn't as good, but at 30# I felt really, really good. (Which is odd given what I'm sure I looked like at the time with screws and hanging from above.) They had my son come in and see me, so that if I was still forgetful from the meds, I'd have my family member to remind me of how I said I was feeling at the time. Poor Eddie, he's such a trooper! He thought I was in pain, but I told him that I felt the best I had in a long time. He then offered to rent a pickup truck and bring me home like that! LOL

Then they took Eddie out of the room and Dr. B went over the measurements of the imaging that they took. Bad news... *What's worse than having the fusion, right? It's knowing that the traction can make your symptoms get SO MUCH better but to hear that the numbers fall short of the numbers to be a candidate for the surgery right now.
* Have I waited too long? Now the muscles are SO tight that although I could get resolution of much of my pain and symptoms in that position, there wasn't enough movement there to allow for a positive outcome to fuse it that way.

The Plan: They've ordered many things. Some of which were: Begin Massage Therapy (ok, so this could be the only "perk"), and PT to "loosen up" things in my neck and upper back. Use new collars that they're ordering for me (Aspen & CTO) to use to simulate the traction to hold my head in this position similar to cervical traction in the interim. This can loosen things up so that they're not as tight... then if my symptoms are still bad, or continue to worsen, I would have the ICT repeated and at that time the numbers should be over that amount to have a successful fusion if needed... or then we'd know that it wouldn't work for me.

The problem: I haven't been able to use the current traction devices (over the door, Miami J, & have tried Pronex), because they cause pressure on the sore area of the plate on the back of my skull. So I hope that I can use these new devices without more problems with the plate. (The original plan was to repair the plate while they did the fusion, however now that the fusion will have to wait, nothings been done about the pain over the plate.) UGH.

After hearing this news I was devastated... all of this for nothing? To feel SO good right then, but to know that it couldn't be fixed this way right now... that I'd have to do more tests, more therapy, more symptoms again before anything could be "fixed"? As they slowly removed the weights on the traction, my symptoms returned, and some were worse than before. Then they unscrewed the apparatus from my skull while I was awake. It hurt, but not as bad as I'd remembered years before... maybe it was the emotion of it all. I just felt defeated by all of it really.

When they took me into recovery I was having horrible leg spasms and eye pain again, (as well as my other symptoms). After a couple of hours and pain meds, I left there to return to the Variety House & prepare to go home early the next day. I tried to stay upbeat for my son, so he didn't know that I was upset by it all, as I didn't even really know how I was feeling about it all yet.

To be honest, I was upset that there was this "number" that prevents you from having the surgery, however I've realized since that--it's a way to prevent a short term relief or a failed surgery. I have prayed all along that I wanted a sign of what to do. And now here was a sign.

I really don't want to have to wear these braces, but I guess that's why it's gotten so "tight" now anyhow... I've not been doing the traction, or wearing the braces due to the pain over the plate... but here I am... still with the plate problem and needing to use MORE orthotics???

I haven't really talked to people about it yet, as it's just SO much to explain & I'm trying to stay positive. It's just so tough to see how good "normal" feels, then have it taken away from you. I will trust in the "plan" & keep putting one foot in front of the next for today.

Once back at the Variety House I looked in a mirror... OMG... WHAT was I thinking??? To get on a plane the next morning??? I had forgotten that they don't let you wash your hair for 2 days post-op! There was SO much blood & betadine in my hair that it "crunched" & stuck straight up. WHAT A MESS! Then to make it worse, while I was on the phone with Ed, I sprung a leak & felt blood in my ear & dripping down my head. I did use a washcloth to clean most of the blood from my hair to get home. UGH. This was NOT a great end to this trip! The pain is worse today, & I have a goose-egg above both ears, looking pretty rough... BUT... I am home tonight, will be in my own bed in a few minutes, surrounded by my family, tomorrow's Christmas Eve. ...Life is still good. <3

Leap of Faith

Well, I guess that's why it isn't called "baby steps" of faith... I figured that with my very low Vitamin D level, that my bones wouldn't be dense enough for this surgery... so I prayed for the test to show me which way I should go. Well, indeed it showed that my bone density was fine. So with that I have scheduled the Invasive Cervical Traction (ICT) in New York for December 22nd, which is next Tuesday. I will be traveling with my 18 year old son, so that we can make this a bit of a "Mom & Son Vacation" & see some of New York together. We will be leaving early Sunday, have a day of testing & doctors visits on Monday, then surgery is scheduled for late on Tuesday. Although this is an outpatient surgery, it's only diagnostic to see if the surgery would help my symptoms & see if they could get the pressure off of my brainstem with the traction in place. I had the ICT done several years before, but not the same way... & it's been so long now that I might be stuck with some of the nerve damage from waiting so long. So this way we can get a better idea if surgery is the right choice.

It's funny that I've never really had such a tough time with this, as I'm not really an "emotional" person. This time however, I've been a mess. I am sure that with Christmas being around the corner, & all of the stress that comes with that, it doesn't help... but my symptoms have gotten so bad lately. The other night I was up ALL night long crying & holding my head in pain, keeping my poor husband up... I should have just went to the hospital, but after catching up on pain meds, hours later I finally fell asleep. Then the next day I still question "if" I should have this surgery done. Between the severe headaches, vomiting, etc... & these problems with my legs now... I know that I have to do something.

So now I'm taking that "leap of faith" and praying that this test next week is clear enough to know (one way or another) what I need to do. If it would help, I'd about do anything! BUT... if I'd end up back where I am today... I'd rather not go thru anything else. I want to be better... I want some HOPE.

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!