December 23, 2009

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

December 8, 2009

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.