Thursday, September 16, 2010
Wednesday, September 15, 2010
still waiting.
As rough of a time as I've been having, I realize something. I thought the hard part of this whole thing was the stay in the hospital. And the few weeks after. And that was hard. But it really doesn't compare to this kind of hard. Because the time in the hospital and right after was supposed to be hard. It isn't supposed to be hard any more. I'm not supposed to still have deafening ringing in my ears, or headaches, or leg pain, or exhaustion. I'm supposed to be better. I think that's what makes it so hard right now.
I'm still waiting on the neck brace. Super irritating, I paid for rush shipping but it's been 4 days. I'd love to give them an angry call, but I don't have the energy for that.
In other news, I've begun working from home more regularly from home. Thanks to Dropbox! It been super helpful, Rachele just drops the files for me to work on in there, I work them, and then she grabs them back out. It's very cool.
I'm still waiting on the neck brace. Super irritating, I paid for rush shipping but it's been 4 days. I'd love to give them an angry call, but I don't have the energy for that.
In other news, I've begun working from home more regularly from home. Thanks to Dropbox! It been super helpful, Rachele just drops the files for me to work on in there, I work them, and then she grabs them back out. It's very cool.
Sunday, September 12, 2010
Waiting for the delivery
My mom helped my find the right neck brace that I'm supposed to wear, I had to order it online because apparently the general population has a short neck. Boo to all of you short necked people! It was hard to find something that was tall enough without being huge length-wise. I learned something new - the circumference of my neck is 13 inches. Who knew.
I still wait to improve. I'm sleeping better, although now I'm sleeping a ton. Maybe that means my body is healing and needs a lot of rest. I hope so. I still have headaches, worse than before the surgery, as well as aches in my neck and legs. I will wait and see what 2 weeks wearing a neck brace does and then go from there I suppose.
I still wait to improve. I'm sleeping better, although now I'm sleeping a ton. Maybe that means my body is healing and needs a lot of rest. I hope so. I still have headaches, worse than before the surgery, as well as aches in my neck and legs. I will wait and see what 2 weeks wearing a neck brace does and then go from there I suppose.
Friday, September 10, 2010
What a pain in the neck.
If you read my previous post, you know that I am to wear a neck brace for the next two weeks. Who would have thought it would be a huge pain in the ass to find one? Apparently I have a very abnormally long neck, which is making things harder. I just want to hurry up and find one so I can hurry up and be done.
Thursday, September 9, 2010
6 Weeks: Backslide
I just returned from my 6 week follow up with Dr. Heffez. My dad and I traveled to Milwaukee from my parent's house in Chelsea, MI. It's about a 6 hour drive, then I flew out of Milwaukee back home.
Long story short is this: The new MRI images are amazing. I don't have a copy of that MRI but am hoping to get one soon. The images look totally different, there is a ton of 'white space' around my brain stem now, and the arteries aren't even touching the brainstem where they used to be distorted into almond shapes before because they were being crushed. Dr. Heffez even pointed out the plate he put in to 'keep my brain from falling out.' His words. It was funny.
That being said, he is not happy with the lack of progress I have made and was hoping for more relief from my symptoms. He looked back at his post op notes and he said there was 'a lot of deformity that was corrected' so I think there was more than he thought initially. He is pretty baffled by my leg pain, but does want to give it more time because there was so much damage that needs to right itself.
He looked again at my cervical spine MRI and my lumbar spine images. In the lumbar spine he is looking for something called tethered cord (TC), which means basically the tissue of the spinal cord attaches to the spine sort of, and causes a lot of discomfort and leg pain. I have a bit of 'abnormal activity' in my 4 lumbar vertebrae, and he said if it were any lower down the spinal cord it would be considered tethered cord. But since it isn't, he's skeptical. He's also skeptical because I present some symptoms of TC but not all the classic symptoms. He is baffled, I think. Which is not what I want.
He is also a little concerned about a bit of my cervical spine (neck) images. It's hard to explain without an image, but basically there's a part of the lower brain stem/upper spinal cord (not really sure what it is, to be honest) that is supposed to 'float' within the spinal fluid column. In my image, it shows the inner cord to start in the middle, go down a bit and veer off and touch my vertebrae. That's not good, I guess. So what does that mean?
That means I now need to wear a 'soft cervical collar' aka a neck brace 24-7 for 2 weeks. The hypothesis is that if I spend a lot of time with my chin vertical and not tilted down (tugging on that spot that's connected to the bone) it will give me relief. Wearing the brace is sort of an experiment - if I experience relief, then I guess there is quite a bit of physical therapy and postural therapy that can be done to really improve that.
I guess the bottom line is that he wants to see more improvement, but because there was so much corrected in there I need more time. He is fairly baffled by the leg pain, so I think he's trying the neck brace to try to figure out that pain, and some of the other pain may resolved itself while I continue to heal.
I don't have to tell you that I'm frustrated, I think that's obvious. And to feel like I'm going backwards - being able to do more, then having to be confined to a neck brace feels like a backslide. It is what it is. If I get any tryingtobefunny comments about the neck brace, I will definitely punch said person in the throat. Not in the mood to joke about this. Annoyed. Mad. So let's just all pretend it doesn't exist, ok?
Long story short is this: The new MRI images are amazing. I don't have a copy of that MRI but am hoping to get one soon. The images look totally different, there is a ton of 'white space' around my brain stem now, and the arteries aren't even touching the brainstem where they used to be distorted into almond shapes before because they were being crushed. Dr. Heffez even pointed out the plate he put in to 'keep my brain from falling out.' His words. It was funny.
That being said, he is not happy with the lack of progress I have made and was hoping for more relief from my symptoms. He looked back at his post op notes and he said there was 'a lot of deformity that was corrected' so I think there was more than he thought initially. He is pretty baffled by my leg pain, but does want to give it more time because there was so much damage that needs to right itself.
He looked again at my cervical spine MRI and my lumbar spine images. In the lumbar spine he is looking for something called tethered cord (TC), which means basically the tissue of the spinal cord attaches to the spine sort of, and causes a lot of discomfort and leg pain. I have a bit of 'abnormal activity' in my 4 lumbar vertebrae, and he said if it were any lower down the spinal cord it would be considered tethered cord. But since it isn't, he's skeptical. He's also skeptical because I present some symptoms of TC but not all the classic symptoms. He is baffled, I think. Which is not what I want.
He is also a little concerned about a bit of my cervical spine (neck) images. It's hard to explain without an image, but basically there's a part of the lower brain stem/upper spinal cord (not really sure what it is, to be honest) that is supposed to 'float' within the spinal fluid column. In my image, it shows the inner cord to start in the middle, go down a bit and veer off and touch my vertebrae. That's not good, I guess. So what does that mean?
That means I now need to wear a 'soft cervical collar' aka a neck brace 24-7 for 2 weeks. The hypothesis is that if I spend a lot of time with my chin vertical and not tilted down (tugging on that spot that's connected to the bone) it will give me relief. Wearing the brace is sort of an experiment - if I experience relief, then I guess there is quite a bit of physical therapy and postural therapy that can be done to really improve that.
I guess the bottom line is that he wants to see more improvement, but because there was so much corrected in there I need more time. He is fairly baffled by the leg pain, so I think he's trying the neck brace to try to figure out that pain, and some of the other pain may resolved itself while I continue to heal.
I don't have to tell you that I'm frustrated, I think that's obvious. And to feel like I'm going backwards - being able to do more, then having to be confined to a neck brace feels like a backslide. It is what it is. If I get any tryingtobefunny comments about the neck brace, I will definitely punch said person in the throat. Not in the mood to joke about this. Annoyed. Mad. So let's just all pretend it doesn't exist, ok?
Thursday, September 2, 2010
Well wishes
First, I want to wish my facebook Chiari friend Trina good luck - she has her surgery on Tuesday (the day before my 6 week check up appt). Trina, you'll do awesome. There's nothing to say to lessen your fear, but know that I'm pulling for you and hoping for a speedy recovery for you! The hospital is tough, but the ICU nurses are awesome, they will take very good care of you. Keep your thumb on the pain button. =)
Tomorrow we leave for Michigan, then my dad and I travel to Milwaukee for my appointment. I get another MRI and then meet with Dr. Heffez. Hopefully my dad and I will be able to stop by Kopp's and try their sundae of the month. I would get another MRI just for some Kopp's custard. Shoot, I would get another MRI for a visit to Northpointe Snackbar. (It's funny how familiar Milwaukee is becoming in my mind. And strange how fond my memories of that place are.)
On another note, I went into a hospital yesterday. I had no idea how jarring that would be for me. I'm interviewing to volunteer with Dozer at Swedish Hospital in Edmonds. I walked in (Dozer wasn't with me this time), I was fine... Until I saw someone wheeling by on a gurney... My stomach dropped and I immediately had butterflies fluttering around in my stomach. It definitely brought me back to that morning before surgery. I have never had anxiety dealing with hospitals, not even though I've had a million MRIs and X Rays and CTs and all kinds of things. But after my surgery experience, I have a whole new outlook on hospitals. I think it may end up being a blessing in the end, hopefully that will help me get in the shoes of the patients that Dozer and I see... I won't start visiting for a few weeks, so I can get a bit more distance between that time and my surgery. That was a hard time.
Tomorrow we leave for Michigan, then my dad and I travel to Milwaukee for my appointment. I get another MRI and then meet with Dr. Heffez. Hopefully my dad and I will be able to stop by Kopp's and try their sundae of the month. I would get another MRI just for some Kopp's custard. Shoot, I would get another MRI for a visit to Northpointe Snackbar. (It's funny how familiar Milwaukee is becoming in my mind. And strange how fond my memories of that place are.)
On another note, I went into a hospital yesterday. I had no idea how jarring that would be for me. I'm interviewing to volunteer with Dozer at Swedish Hospital in Edmonds. I walked in (Dozer wasn't with me this time), I was fine... Until I saw someone wheeling by on a gurney... My stomach dropped and I immediately had butterflies fluttering around in my stomach. It definitely brought me back to that morning before surgery. I have never had anxiety dealing with hospitals, not even though I've had a million MRIs and X Rays and CTs and all kinds of things. But after my surgery experience, I have a whole new outlook on hospitals. I think it may end up being a blessing in the end, hopefully that will help me get in the shoes of the patients that Dozer and I see... I won't start visiting for a few weeks, so I can get a bit more distance between that time and my surgery. That was a hard time.
Wednesday, September 1, 2010
Recovery: Mac and cheese
At the suggestion of my friend Laura, I will start putting the recipes I'm trying during this recovery time.
I made this mac and cheese the other day. Here are my suggestions: add a bit of milk, lessen the amount of bread crumbs (they are overpowering) and add more cheddar! It isn't cheesy enough without more cheddar. With those changes, I'd give the recipe 4 stars. Without them, 2 stars. It tastes good, but it more a casserole than mac and cheese.
The sun is showing it's pretty little face today. I'm headed to Steven's Hospital to start my volunteer orientation so that Dozer and I can visit as a pet partner team. Next week I will be at my 6 week follow up appointment with Dr. Heffez.
I made this mac and cheese the other day. Here are my suggestions: add a bit of milk, lessen the amount of bread crumbs (they are overpowering) and add more cheddar! It isn't cheesy enough without more cheddar. With those changes, I'd give the recipe 4 stars. Without them, 2 stars. It tastes good, but it more a casserole than mac and cheese.
The sun is showing it's pretty little face today. I'm headed to Steven's Hospital to start my volunteer orientation so that Dozer and I can visit as a pet partner team. Next week I will be at my 6 week follow up appointment with Dr. Heffez.
Subscribe to:
Posts (Atom)