Wednesday, November 11, 2009

Health Update - All the Gory Details

Oh, how I wish this was a crafty post, spiced with humor and a touch of the goings on at Casa Maki. Sadly, all I've got for you is an update on surgery and procedures. Boring.

I was writing an email to a friend updating her on my condition and it occurred to me that I could save myself a lot of time by posting parts of it here. But first, thank you to all of you who have been so generous with your prayers, love and concern. This has been hard and scary and frankly boring. I know I want to go do something else. I bet you do too.

Health Stuff:

I saw one of the neurosurgeons last Tuesday. At that point they were talking about emergency surgery. The head of neurology reviewed my case and sent me to the back fusion specialist. Uhm... no! There was a space where I didn't know she was talking to me about fusion because I had been told I was getting a discectomy and laminotomy (shaving off disc and vertebrae). Once all the tests and pre-surgery diagnostics were done she and I had a sit down and we both agreed that treating less than 10% of the pain (from the herniated disc) but ignoring the 90% of my pain originating from my tailbone is nuts. She sent me back to radiology for a new work up and the radiologist said he's never seen a tailbone like mine in his 20+ years of doing x-rays; it is a tight curl towards my stomach. You can see a picture of it here, if you look closely you can see the next few pieces of tailbone after the part with the contrast dye.

Then I went back to the neuro. She ordered a new MRI and a coccygeal injection and then we'll decide on how to proceed. At the time, not having surgery - as early as the next day - felt wonderful. I was so relieved. But now as the time is wearing on I am starting to feel like, "get it over with already!"

So I got a new MRI and on Monday had the tailbone injection. When they injected lidocaine into one of the two fractures in my coccyx I had 100% relief. I jumped off the table (in spite of a horrible scary uber-painful needle just being stabbed into my joint) got dressed and jumped up and down to get my hose up for the first time in five year. My very concerned husband came back to the treatment area to help me dress and I was dancing around him. He starts to cry when he tells this part of the story because he hasn't seen me move around freely in over five years.

At home we were all rejoicing. The kids couldn't remember ever seeing me walk so well. I cooked, I cleaned. I was exhausted and oh-so happy. Then, about three and a half hours later, the lidocaine wore off and I was more or less crippled again. To make matters worse, I was also dealing with having done a bit too much and the painful injection site wreaking havoc on the nearby nerves. Since Monday night things have been horrible. I've been on the maximum amount of pain meds and still I cry all the time. I can hardly walk. My doc, who thinks I have the strength of a rhino, will be surprised this AM when he hears me sobbing into his answering machine. Just like last time, the flare-up from the injection is the worst pain ever. I would say it's worse than transition in labor. Ow.

So the nurse called yesterday for a report and I told her what happened. She said it's a textbook complete success. Amazing pain relief followed by horrific pain 2-5 hours later was what they were hoping for (her words, not mine). Now I need to hear back from the neuro today and get to work scheduling my coccyxectomy (tailbone removal). It has one of the worse recoveries of surgery - so says three neuros I've spoke with. It'll be weeks before I can even sit in a car! But, it also has a 90% success rate and nearly every person polled a year afterwards says it gave them their life back. A lot of these folks go from being very limited like I am, to running marathons, doing triathlons etc. It's like a modern miracle. It's just the getting through it is pretty hard.

So, that is where I am at.

The number of craft projects and writing ideas that are stacking up in my head are getting a little ridiculous. I think I'm going to start writing them down so when I'm fully recovered I can jump right in.

I hate to tag this on like a shout out, but Happy Remembrance Day (I always forget the US version... Veterans Day? Seems like it should be Memorial Day but what do I know?) to everyone. Thank you to all the veterans.


MaryC said...

I am thrilled you got to experience some hours without the pain. I am very sad that it wore off so quickly. But I am hopeful that their treatment plan will put you to rights and you will be dancing all the time.
Continued prayers for you always.

Elizabeth said...

90% success rate is fabulous to hear. Regained mobility is fabulous to hear, too. :-D

The recovery sounds like a fierce dose of suck, but you do what you gotta do.

Also, a thank you to those who have been without their mothers, wives, and daughters.

Carmen said...

Hang on to that feeling of when you got your mobility back. Hopefully come this time next year all this pain will be the memory and that will be the reality. 90% is an amazing statistic.

Definitely write all your amazing ideas down.

Feels so inadequate saying our thoughts are with you, but they are.

CathyR said...

Nicole I'm so glad that you had some pain free hours. A 90% success rate is terrific and being able to walk pain free will be awesome. The healing process won't be fun, but you have such a positive attitude and that will help a lot.

Write down all those ideas. I'll be looking forward to seeing some amazing things from you in the future.

Jenna Bayley-Burke said...

So, what you're saying is that next year you'll be doing a triathalon? will you get home if you can't sit in a car? Because I don't see you doing the whole hospital thing very well. They don't have a stockpile of vegan pumkin chocolate chip muffins in the freezer.

Kathi said...

It must have been amazing to have some pain-free hours, though I'm a bit stymied as to why you were wearing panty-hose. Those things are torture devices.

I think it's a great idea to keep a notebook for your ideas and sketches. It'll keep your creativity going.

You've gone through so much already and do so with such grace and strength that I know that you'll get through the surgery and the recovery in the same style.


Kristen said...

I hope the good news is enough to keep you positive. I hope that the success rate was good news for you and made you feel better. Not knowing how long, and if it was going to ever get better would drive me nuts! I am so sorry for you to ride the HOPE roller coaster , and I am keeping you in my prayers for a definite success!

God's blessings to you and your family!


grrlpup said...

I'm thrilled at the prognosis...seeya on the marathon course! Wait, this isn't one of those "Will I be able to play the violin, Doctor?" things, is it? ;)

At the same time, I don't mean to minimize the grind that you'll have to go through to get there. Hard days even for those of rhino strength, which by the way you totally have. Keep us posted but even when you can't we'll all be thinking of you every single day.