Tomorrow is the day.

I have surgery tomorrow. I check in first thing in the morning...5:45 am. Early. Then they wheel my in exactly at 7:30am. I'm the first appointment of the day. I guess I have kinda found a calm. I have been having a lot of anxiety lately but in the last few days I have accepted my surgery. Don't get me wrong I'm not jumping around excited for my surgery but I've accepted it's going to happen and I'll get better afterwards and that in order to get better I have to go through this trial.

This trial... I was thinking about it all. Here I am always doing crazy things like skydiving, riding motorcycles, taking risks. And this surgery has less risk than some of those other things. So why do I feel so upset about this? I figured it is because I don't have any control over the situation. But my surgon has alot of experience and the nurses are very skilled.

I appreciate all the prayers and love and all the fantastic support!!! Here I go. Wish me luck.



All my love!!! xoxoxoxoxoxo-->

-AP

Don't worry.

I had dinner with my Dad and sisters last night. It was great. On the way home my Dad mentioned that he doesn't read my blog any more. When I asked him why his response was, "It's too hard to read." I never thought about that. Here I am writing about my pain and the things I deal with and I never thought of the impact it would have on those who care about me. To see or hear about someone you care about in so much pain and having to go through something scary can hurt you too.

Don't worry though. I'm a trooper. When I find my self afraid I will master my fear. Knowing that Courage isn't the absence of fear, but even with fear doing what you need to do, and moving forward is courage.

I take strength humor and love from all of you around me. When I write or speak about how I am hurting or struggling know that it isn't forever. And if you see me looking weak after my surgery know that with each day I will get stronger and heal.

Don't worry.

All my love,
-AP

Surg Update

So I have the surg date. Jan 24th. I get wheeled in bright and shiny in the morning. Oi. I'm trying to master my fear and have courage...it's a little hard though. I haven't had a drop attack in a while but my other symptoms have been overwhelming lately. So I have been keeping busy getting all the necc paper work done and making sure that every thing that needs to be ready is ready. I guess it's my way of coping. They say that I will be in my own room Friday late morning early afternoon. So I should be able to have visitors when I'm in my own room. Here is a bit more info...To contact a patient or get patient room information, call (507) 255-5123.Visiting Hours8 a.m. to 8:30 p.m.

Any questions or comments?

New info vs. old misinformation

So my world has been turned upside down. Last Thursday I had my appointment with my neurosurgeon at the Mayo. I learned that much of what I thought I knew was wrong. I learned that Chiari is not a brain malformation but a skull malformation. Basically my skull didn't form correct and is too small. My brain is formed correctly and looks good but my skull is too small to hold my brain and now my brain has herniated in through the base of my skull (the Posterior Fossa) and is causing all kinds of problems. Well the Neurosurgeon said that the only symptoms he can verify that are being caused by the Chiari directly are the head aches and the head and neck pain. At this point in time there are no tests to determine if my other symptoms (problems...including the drop attacks) are being caused because of the Chiari. My Neurosurgeon says that we'll know if they are related if after the surgery they go away or not. If they don't go away then he said I may want to look into having additional tests done to determine if there is something else that may be causing the symptoms. So yeah now that I know that there is something wrong and what it is I decided to have the surgery. He also told me that in some cases if people who have Chiari choose not to have the surgery and tough out have had a Syrinx develop which can cause paralysis and then the surgery would be mandatory. So don't have surgery and maybe wake up one day and have one side paralyzed and have to wait in that condition and have to have surgery to correct it. So I decided to have the surgery and to take the chance to not hurt anymore. I'm scared but I know it will be a chance to get better...I've got to buck up and be brave. My surgery will be toward the end of January.

Finding my "Brave"...
-AP

Fresh from the Mayo

So I had my appointment at the Mayo for my second opinion. The neurologist apt was on Thursday. It went pretty well. I really like my neurologist but he wants me to do more tests to help determine if my Drop Attacks are from the Chiari or if something else is causing it. I had an appointment with my neurosurgeon on Friday but it ended up having to be rescheduled for this coming week Thursday because they needed me to have these new tests run before I spoke to my Neurosurgeon. So not a whole lot of new news. I have been weighing my options of surg because the doctors have all agreed so far that I am a good candidate for surg and that I have a good chance that the surg will be successful. I'm just not sure... More news after this Thursday cross u r fingers.

-AP

Closer

So Last week I had a thought that I haven't had yet. "What if they ask me if these symptoms are something I think I can live with? Can I live with it instead of surgery?" I realized that I have alot of big decisions to make. Surgery is a big deal and there are serious risks involved, but the chance to not have anymore bad days... are the risks worth it? My first reaction is yes. So can't do anything until I find out what the Neurologist says. The closer it gets the more nervous I get. All the silly and scary "What if's" run ramped through my head.

My Myo fascial therapy has been helping me manage the pain better. And! A friend of mine gave me 20 free visitor passes to the YMCA so I can try out the therapeutic pool there. I guess it is warmer than a normal pool and is supposed to be great for helping muscles. We'll see. I just am tired of not exercising.


Breath by Breath...

-AP

Holiday & myofascial

So Thanksgiving was great. Good food and even better company.
During the vacation Roberto said, "You sleep alot." LOL. This coming from the guy who would sleep until 11am every day of the weekend if he could. I responded, "Well if I'm up at 7 or 8 am on the weekend and I go to bed around 11pm...if my body says 'nap.' then a little nap after dinner isn't too bad." Now exact words are hard to remember but I'm pretty sure it was along those lines. :) I have had some aches and pains (normal) but I have really had to slow down this weekend. See, I take after my Mother. A slow day or a day for taking it easy is doing everything you normally do except you sit down and watch a movie in the evening. I have a hard time just sitting and being lazy on the couch for a whole day...but! I did it this weekend. I didn't have a choice spending the weekend with his family I didn't cook or run any errands. Nothing. I helped pick up the house and tend to the pooches but really I didn't do anything. I thought of it and laughed because it was kinda like training for recovery. Hahaha. If I do have to have this surgery then I will need to spend alot of time just relaxing and laying around. I guess I can justify anything. Anywhoooooo...

I had my first myofascial release apt on last Tuesday and it went well. I really like my PT. We spoke of my symptoms and what I would like this therapy to do for me. I told him of the pain and the symptoms and how I just need help managing the pain with out drugs and maybe help alleviate some of the symptoms. He did mention that there is always a chance that this may not help, but we won't know until we try it. So coming out of my first appointment I was sore and achy but optimistic that with a few more sessions that it will help.

I hope every one had a really nice long weekend and I look forward to hearing about all of your holiday weekends and adventures.

-AP