And here we are...

This has been quite the experience. I am up and about, just a little sore at the incision points. It is a curious sensation having the stimulator turned on. Here is the sequence of events...
July 15
6:30am - Check in at the hospital for surgery.
8:30am - Surgery begins (I, obviously, am out)
11 ish - Surgery is complete and I am in recovery. The ANS rep (and his trainee) are in to test the unit to make sure everything connected - it did!! I doze off again.

The next day or so is a blur. Broth, water, husband, mom, dad, sister, sleep, husband, son, sleep. Vital checks between each of those items. Breathing exercises, drain emptying and pain. Thank goodness for drugs. These incisions are pretty painful at first.

There are three incisions, one right by my neck on the right side (front), one on the top of my shoulder and one on my back. There is also a drain right below the incision on my back to make sure that no fluids build up around the lead. None of them are really large, but are in places that you don't realize how much you move.

The staples came out on Thursday and they turned on the unit. Until now, it had to be turned off to make sure there was no possibility for "zapping" because of fluids. It is almost impossible to explain the sensation. It almost feels like my arm is just waking up, you know how your foot feels after it has fallen asleep. If I turn my head (which is still a little tough) it moves the lead a bit and I can't feel it or I get a surge of energy. They say that each day this will get better as my neck heals and scars the leads into place. The took x-rays the day of surgery and activation day and it is still in the same spot. Hooray!

This process has kept me giggling. I now have a warranty, identification card (to get through metal detectors) anntena/battery charger and remote control. We got two boxes of information after surgery. I got confirmation that my warranty is activated today in the mail with my permanent id card. The ANS rep, Tim, told me that there is more technology in me now than it took to launch the Apollo spaceship to the moon. I am just glad that is was a bit cheaper than that. I can't wait for the bills to start coming in. Thank goodness my company has such a great insurance plan. This could have been very painful.
Now the best news, I would call me 90% pain free, if not a bit more. Once I am used to it, it might be better, but I will call this successful!!!

This is it

Today is the day. We are leaving the house in just about 1/2 hour. Yesterday was a very nerve crazed day. Now, I seem to have settled down. Everything is ready to go. The nice thing is, the next time I post, it will be with reduced pain. Hooray!

Two more days

I am getting so excited. Two more days until relief. How could you not be ready for that?? I am really looking forward to it. I will keep you all posted. Tomorrow is my pre-surgery appointment where I hope to get the final details. I am mostly looking forward to Wednesday so I will finally know what they mean when they say "tingling". It is hard to imagine what exactly that will feel like.
That is all for now.

Hurray and WOW

I got my book today. Conquer Chiari. The first thing I did was to flip to the section - Living with Chiari. And what do you think is the first section in it?? PAIN. I thought it was just a fluke that I was having this arm pain but apparently it is very common for patients with Chiari. I figured that after the decompression, I was back to "normal" and was having pain separate from that. Now, 15 years later, I find out that is not the case. According to Rick Labuda, the author of the book, "surveys have shown that pain is the single most common, and likely most difficult problem CM/SM patients face after surgery. It is likely that many reading this right now may be experiencing some type of pain, be it a burning pain for no reason, or painful muscle spasms in the neck and shoulders. For many in the Chiari community, pain is a way of life." That opened my eyes to the fact that there is a lot more to Chiari than I knew. And a lot more that other people need to know as well. I understand why my first PCP told me that it was "my cross to bear". He didn't know any better. It even says that since pain involves perception, there is no way to know how much pain a person is feeling other than how they describe it. Let me tell you. It is almost impossible to describe the pain. You would think that after years of being asked over and over, I would be able to do it. But a couple of weeks ago when the Neurosurgeon asked, I still couldn't. The closest I have ever been able to come is this... It starts at the top of my shoulder/bottom of my neck and throb/burn/shoots through the shoulder, elbow and down to the thumb. It is especially painful in the elbow, wrist and thumb, as well as the shoulder and neck. Periodically I will have shooting pains across the base of my scull/back of the head (on the right side only). Now, take that pain and have it intensify about every 15 to 20 seconds with exceptionally painful periods about once every 5 to 10 minutes. Try to cover up the pain by "grinning and bearing it" so you look like a normal person and people don't look at you like you are crazy.
I have been getting killer heartburn since I started taking the Percocet so the Pain doc perscribed Dilaudid which, apparently, is some serious stuff. I guess it would be, considering it's generic name is Hydromorphone.
That is enough for tonight. I am hoping to get some reading done and will be able to let you know more about it all tomorrow.
Thank you for taking the time to read my story.

Good News

I got a call from the doctors office this afternoon letting me know that everything is in place, insurance has been approved, pre-surgery clinic appointment is set, Dr. Frizzell has everything he needs and we are ready for next week. I felt an immediate change in my stress/anxiety level. Now I can focus on getting everything around the house in order. I am kind of looking forward to all of this. I guess I shouldn't say kind of. I am super excited. How many people can say they have had an upgrade?? And can recharge in the car!!
I got to ask a few of the questions that have been swirling around in my head. I saw the pain doc so we could figure out where the lead needed to be placed. We decided to be prepared and cover the right side of my scalp, down my neck, shoulder, elbow, arm and hand. Since I will have the ability to adjust which area is being stimulated and how strongly, it is better to cover extra space that I might not realize is hurting because the pain in my arm and shoulder is so intense. I hope that my Arnold Chiari book arrives before next week. I want a chance to look at it before I head in.

Questions

Don't you hate when you get a voicemail at home about something you need to do but can't because you got the message at like 10 pm?? St. Luke's called me this afternoon on my home phone - even though all of my information has my cell phone number to prevent this type of thing from happening. This is confirmation of my anxious, OCD personality.
Today was spent trying to ensure that all of my paperwork is in order for short term disability - thank goodness for a good job with benefits. I am also trying to get all the little details I think of done now so that I am not scrambling this next week. I figure there is plenty to worry about so getting a few things completed will help.
My mind is swirling with questions. When they say two days in the hospital, do they count the day of surgery? Does that mean one night and two days or two nights and two days? What time will the surgery actually start? How long will it take? Do they anticipate longer than three weeks down time? Is that three weeks at home? I know I can't drive, but can I ride? These are just a few of the millions of questions that are swirling around in my head.

Ouch - 9 days left

I made my appointment at the pre-surgery clinic today. I have doctors appointments on Thursday and next Monday. Tuesday to get all of my work turned over to my backups. I am really excited, but also a little nervous. How can you not when you know they are going to cut into your neck and chest. And I am not that nervous about the surgery itself, but more the pain that is associated with it. I took a pain pill at work today and... nothing. It is very discouraging when you can't take anything that will help. Lucky for me, I only have a short time to deal with that.

Day 10 - Panic is beginning

Just home from the Barrett 4th of July family fun to find a cat that had been locked in a guest room for 2 days. Guess it is a good thing we didn't stay any longer. I was hopeful that some "relaxing" time with family and no work would help a little with the pain, but that would not be the case. I think that the stress of the upcoming procedure, along with increasing pain has made me very cranky. I jump to yelling/sarcastic frustration much faster than I typically do. I feel sorry for the boys.
I am trying to keep my mind in a positive light knowing that the next week and a half is just going to get more and more stressful. The one thing that I keep in my mind - relief is coming. I can't wait until I can sleep without medication. I don't know how many of you know this, but the stronger the drug, the more the drool. And yes, I did just admit that.
I am not looking forward to going to work tomorrow. It is just getting more and more painful to type, yet I keep doing this blog. The nice thing is that I don't have a deadline and can take as many breaks as I want.
I ordered a book this past week - Conquering Chiari - which I hope to get tomorrow. I want to see if some of the other "problems" I've had are symptoms that could have been caused by Chiari or if I just really do have the body of a 70 year old.
I am trying to have a sense of humor about this whole process. This is going to be my upgrade. Making me a bit better. I joked with the PA in my pain management docs office. I asked her if they could put a couple of LED lights in there with the battery pack. I love to do that, because they are never quite sure if I am being serious or not. I have an appointment with the pain doc on Thursday to determine how big the paddle needs to be and where we are going to place it for sure. I called last week to make sure they weren't going to have to shave any of my head so I could chop of some of my hair. I was going to donate to Locks of Love, but they want 10 inches and that would have meant we had to shave the back of my head. So... we just cut off 6 or so inches.
Time to wrap up some laundry so that the munchkin can get in the shower and we can all head to bed.

Day 14 - Sooooooooo tired

I don't know why, but I have been exhausted today. I couldn't seem to keep myself motivated during the day. I have been getting these weird pains in the back of my head. I have had them in the past, but never really notice them. I'm sure it is because I am more aware of what is happening. I was reading my pack of papers and spent part of today trying to find what meds I have to stop. I think I will have to rely on my doctors expertice. After all, that's what I pay them for.
The pain hasn't been unbearable today, but it is still no picnic. I think I only had twice where I had to stop what I was doing for an extended period of time until the pain subsided.
I am suffering from writers block today (must be the Lilo & Stitch movie playing for the second time). Have a good night. And Dad - congratulations!!