I didn't realize how long it had been since I had posted. I have been doing great! We turned the system up and it is covering more of my pain. I can't help but laugh because when we turned it up, I ended up with some stimulation in my leg. When you get the stimulator in your cervical spine, because it is so narrow, you can end up with some mild stimulation in other areas. With the relief that I have, I can handle some other stimulation. It is unfortunate that information on stimulation isn't more widely known. I can't imagine that there aren't people suffering out there that could be helped by this.
Last Thursday, I ended up having a little "seepage" from the incision on my chest. It didn't look infected, so I didn't rush in to the doctor. I had an appointment on Monday to discuss my medications anyway. Then, over the weekend, my mind tried to freak me out. Bottom line is, it was just my body pushing out one of the stitches under the skin (I guess they have to stitch inside and then staple the incision shut). Today you can't even tell that there was anything wierd.
Actually, all of the incisions look great. The one on the top of my shoulder pretty much looks like I had a cat scratch me. I can't really see the back of my head (hahaha) but was told it looks fantastic as well. I am going to be declining the final pain medication over the next couple of weeks and will be completely done with them by the end of the month.
Who could ask for more???

Great progress

I went to meet with Tim yesterday. He added another program for me. This time it had added a lot of "tingling". I didn't realize how a minor change in programming could make changes everywhere. Now I have tingling in my rear, right leg and once in a while in my left arm. Because the spinal cord narrows, increasing the output creates feeling in many more areas.
This is sure an interesting device. The more I use it, the more interesting it becomes. I don't know why more doctors don't recommend this. It seems like they are more interested in keeping you coming back for more appointments. Even though there are still appointments around this. My hope is that I can get the word out to a few people that might benefit.

Keep on keepin' on

Things are still going great. I am going to meet with Tim (ANS rep) on Monday to tweek the program a bit. I just want the top of my shoulder and neck to be the beginning point for relief. The incisions are feeling much better. The muscles on the back of my neck are still tender, but getting better each day. I am really looking forward to going back to work. I will start working 4 hours a day on Thursday (8/6). I am very thankful that I don't have to do full days right off the bat. I still get tired and don't want to fall asleep at my desk.

I am planning on taking more pictures soon. The scarring will not be too bad. The front incision is going to be the bad one. It is a little, the only word that I can think of is overlapped. I'm sure it will get better with time. I am going to start putting some scar therapy ointment on it. Should help.

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.