Home Sweet Home

We are home. We got in late Saturday night. I am exhausted, and I am in PAIN! It seems that during the cisternogram last Monday, the needle going into my spinal column also managed to hit a nerve. The nerve didn't like getting poked with the needle one bit, so my back and my left leg have revolted. It hurts to sit, stand, walk, and lay down. Lovely. Just lovely. I knew my back was hurting, but it always hurts after a lumbar puncture. When the pain got worse instead of better, we had to get it checked out. This is not something I want to deal with.

One the positive side, I got a nerve block in the back of my skull Friday at Mayo. It hurt like holy heck for about two minutes, but then it completely stopped all the pain. Pain free is very, very good.

We are now in the waiting stage. My team of doctors will review all of the test results from the past week, and determine whether or not the neurostimulator implant is a option for me. We are hoping and praying it is. If they say yes, we will be back at Mayo in about two weeks for more testing. The process will take about a month between testing, surgical procedures to get ready for the implant, and the actual implant.

Right now it is the only hope we have to hold on to, so we are holding on tight.

An Answer and More Questions

Today was a day of waiting. And waiting. And waiting. We were trying to get in earlier for a Friday afternoon appointment, so we waited on standby. No such luck today in getting an earlier appointment, but that also means no needles today. Yea!

So we have a few answers, and more questions. The biggest answer so far is that I can not have the major brain surgery to fix the problem and repair the damage. It just can't be done. It is a blow to us. We knew from the beginning it was a long shot, but we were so hoping that something could be done.

Now our hope rests on an implant, something called a neurostimulator. It doesn't fix the problem, but it basically short circuits the pain signals my brain gets, making my brain think I'm not in pain. Realistically, it can reduce my pain by about 50%. That's a huge amount, and something we really, really hope can be done. We don't know if it can be done yet. More tests will tell, but we are so hoping.

I will still have a leaky brain, but the pain from the leaky brain won't be as bad. There are risks and complications associated with the surgery; and I have gotten some test results back that are not exactly making my doctors happy. So the jury is still out on this one. Our fingers are crossed and our prayers are fervent. My main neurologist, after getting back results from one test, told me, "Well, I went neurology because I wanted a challenge. And here you are." He wasn't smiling.

So on to plan B, or C, or D....I've lost count. But still here we are, and we aren't down for the count yet.

Day 3...A Roadblock

Have I mentioned how tired I am? Several times, you say? Oh, sorry about that. It seems to be a recurring theme. This place is exhausting. There's a lot of hurry up and wait. Like this morning. When I thought I had an hour to make my next appointment. When I double checked I realized I had 20 minutes. That's not a lot of time, considering Gary was in the shower, and Mayo is a huge facility.

It got better. I got to the second floor of the hospital, found the right area, and things seemed a little....off. Well, a lot off. It looked like a residential treatment facility. I re-checked my schedule. I was on the right floor of the right hospital at the right time (barely). I checked in and waited. When the nurse came to get me and we started talking, I discovered my first impression was right. I was at the wrong place. A foul up in the scheduling process had me at the wrong building, the wrong floor, the wrong everything. No, I wasn't here for the intensive three week program. Thanks, but no thanks.

A quick check with my doctor proved that a few (dozen) wires got crossed. I wasn't supposed to be at that clinic. I was supposed to be at the other clinic. Which means that now, instead of getting a very important consultation done today, it won't get done until Friday. Sigh. Just another day in paradise.

Day 2 Another One Down

We made it through another one. I have several dozen more needles holes in me. My back is an amazing rainbow of blackish-bluish-yellowish-purple. I hurt, well, pretty much everywhere. I am whatever the word for beyond bone numbing exhausted is.

But, this day is almost over. My bed is calling, and we don't have to be at the hospital until 8:30 in the morning; practically mid-day by Mayo standards. I get to actually sleep all night, and as far as I know, there aren't dozens of needles in my future tomorrow. Maybe a few, but not dozens. A definite improvement.

Day 1...Survived

I survived it. Gary did too. So did my Mom and my sister, who had the very important job of praying. I've got so much scar tissue in my spinal column from so many previous needle sticks that it is very hard to find a new place to go into without hitting scar tissue, which makes a painful procedure worse. Praying was important, and it worked. The needles went in relatively easily, all things considered.

So, this, my longest day, is finally over. I didn't sleep last night, so it was a very long day. The procedures haven't gotten any better, but they at least weren't any worse than I was expecting. I am very sore tonight, with a few more bruises on my back and in my arms. I am radioactive, I am beyond tired, and I can't sleep. One of the tests tomorrow requires no more than four hours of sleep tonight.

I'm slugging double shots of expresso. No sleep last night coupled with this day means staying awake tonight is not going to be easy, even on a caffeine high. Sigh. But this, my worst day, is over. The tests tomorrow won't be fun. One of them involves 22 needles going into my scalp and the back of my neck. Another one involves even more pokes, more than I can count, all to figure out just what is happening in my brain.

It will be a mark of today to tell you that nothing tomorrow will come close to what happened today. I'm not looking forward to it, but neither am I dreading it. It's just routine, and I've had both procedures scheduled for tomorrow quite a few times in the past.

My mom tells me so many people are calling her, praying for me and asking about us. I can't tell you how much it means to me, to have that little bit of home way up here, so far away. Thank You. I've gotta go find more caffeine now.
Signed,
Bruised, Battered, But Not Beaten....