Surgery Experience Part 2 and Recovery

Hello all,

Sorry it's been a couple of days since I have posted, I have been trying to get as much rest as I can and recover so I can get back to my life as soon as possible.

But here is surgery experience part 2, there isn't much more after the ICU, but there is a little bit.

After I got my CAT scan the next morning (Tuesday), I got out of the ICU in late afternoon. I was SO happy to get to a regular room. They took my arterial line out, unhooked me from all of my monitors and things that beep and I was free ( except for the catheter which stayed in until I got out of bed in the regular room.



*Some of my hookups*

I said good bye to my lovely nurse Laura, even though I wished she could go with me, and off I went.

The ride was bumpy, but I didn't expect anything different...

I got to my room, and my first roommate was a trip...

She pushed the call button every 2 seconds and people were in and out of the room all the time...did I mention the hospital is the WORST place to recover from anything?

So about my eye infection...well it kept getting worse...I couldn't leave my eye alone and it always felt like something was in it. The people in the ICU had flushed it twice and there was nothing in it and I had so many lights shined in my eyes that I was about ready to explode. The opthamologist came and looked at my eye and told me that I probably had a corneal abrasion with conjunctivitis, which basically means they scratched my eye taking the tape off my eyes after surgery, and then it got infected. Most likely from the steroids they gave me to suppress the swelling in my brain, they were lowering my resistance to infection. I'm just full of luck lately.




I am so glad that she left because I actually had some quiet for about 6 hours so I could sleep...

I did my walking, had my visit from physical therapy to make sure that I could make it up the required amount of stairs that I had to, and after that, and a day more in the hospital, a lot more walking and I was sprung!! :)

I am home now, but dealing with some setbacks...

My eye is better!
But I have headaches with changing positions, and I am wondering if that is something that I should worry about. I have an appt with my neurosurgeon tomorrow to get my stitches out, and I will be asking him about that tomorrow. It's probably nothing, but I hate the return of the headache....

Here are some pics of my stitches:




*This is the first time that I saw them*

Sorry, again for the long post! :) Hope everyone is doing well! <3

I'm home!! Surgery experience Part 1

Hello all!

I'm home, and alive and really happy that pharmaceuticals exist...:)

I am going to do the fill experience blog in a few parts because it's going to be such a long blog if I don't...

So...here we go!

Day 1: Surgery

My surgery time was at 7:30am, and I had to report to St. Peter's at 5:45am. First of all, I live an hour away from the hospital, and second of all, I am not a morning person. So getting up at 3:30 to take my "pre-surgery shower" and leaving the house by 4:30am, was not my favorite.

The emotions that were going through my head were those of both excitement and immense fear. I was really excited to get rid of the problems that I had been experiencing for the past 5 months ( or more in some situations), and fearful because well, it's brain surgery.

I have had surgery before, so I know what the whole experience is supposed to be like. You get there, you wait in the waiting room for a ridiculous amount of time, and then you finally get called back. Not at St. Peter's...I didn't even get to sit down in the waiting room before they told me that I could come back.. I was in a pre-op bay, and they were telling me to pee in a cup. My poor mother though, she didn't really even have a clue what was going on...

They had TVs in the pre-op rooms, which was pretty nice, since I had missed the morning news, and I was nervous anyway, and I needed something to distract me.

St. Peter's process was a little different than the other hospital that I had been to, but they had you register right in the pre-op bay, got your vital signs and went right to town...there were no delays in this hospital.

I don't hate needles, but needles seem to hate me. My veins don't like to be poked or proded at ALL. It took them two tries to get a vein, and about 15 minutes...that poor nurse...she probably examined every vein in my body before she tried the one that she finally got...it was right on top of an existing bruise from the iron infusions that I had been getting the week before..

The thing that ANYONE neglected to tell me, was that I had to get an arterial line. An arterial line is used to measure your pulse and blood pressure in a more accurate way, and when playing around with the brain, they want to be pretty damn accurate with those numbers. Well, as I said before, my veins/arteries are not cooperative, and their attempt at the first one was unsuccessful..even with ultrasound.The "forget what happened to you" drugs didn't work because my IV in my upper arm apparently wasn't working, and when they tried to put this in outside the OR, I could feel every second of it.  When I woke up, I found evidence that they had tried FOUR times to get this line in, on both hands...



The finished product....



Three of the four attempts...

I went to sleep without incidence...and woke up without a headache. WITHOUT A HEADACHE.

W I T H O U T    A    H E A D A C H E!!! :) :) :) :) :)

This was the best feeling that I have ever had. Knowing that Dr. Lovely had done something so profound for me, in an instant....was incredible.

My lovely PACU nurses Heather and Kayla were AWESOME...and you will see that is a theme with the St. Peter's nurses.....

Off to the ICU!! Where I met my lovely nurse Laura!! She was SO awesome. She was so caring, and she took the time to listen to you, even when it wasn't about pain...she was so nice.

Here are some lovely pics, some are repeats, but here they are anyway:



Incision right after surgery



Beginning of lovely eye infection....

There will be more of my experience and more pics in Part 2, which will be tomorrow, but for now, I am going to go to bed. Good night everyone! Happy dreams! :)

I'm alive!

Day 4 post op:

Hello all! I am alive and well! Not out of the hospital yet, but I needed to get this post up before I forgot some things!

I'm alive and well, and in St. Peter's Hospital in Albany. I have had one of the best hospital experiences with all of my nurses here. Starting from the PACU nurses Heather and Kayla ( I remembered their names!!) and my WONDERFUL ICU  day nurse Laura, and night nurse Tim, I have been managing my pain, and increasing my activity over these four days. The only road block that I have hit was the emergence of an eye infection a day after surgery, which leaves me looking a bit like Frankenstein.

I am in a regular room, from which I hope to be discharged tomorrow from, and my awesome nurses Erika and Ashlee have been taking care of me....they said that I scare them because I am too quiet and don't ask for things as much as other people, but I figure, if I can get it myself, why not let them do their jobs somewhere else? As much as I love them both dearly ( and I hope to get a pic with at least one of them before I leave), I don't need to be a thorn in their side just because I am in the hospital...I am here to recover, not recline...recovery means getting up and moving around, and being independent.

Here are some pics from my days here to tie you over until the complete experience blog post is put up:



My incision, pic taken while I was still in the ICU



Lovely glamour shot of me in the ICU...



My arterial line...experience explained later...



The lovely eye infection I developed in ICU...again, experience explained later

Conquering Chiari on Monday :)

I called the hospital where I am going to have my surgery, and my surgery is at 7:30am in the morning, with a 5:30am arrival time. They aren't even going to need to put me to sleep, because I'll just be asleep.

I don't think I am getting nervous because of the surgery, I am just getting nervous because I have learning more and more of the things that I have been experiencing throughout my whole life have not been at all normal, and I am afraid of all the changes that are going to happen to me. It's kind of going to be like getting glasses and seeing the world in a whole different light. Not having headaches when laughing,coughing, or bending over,being able to find the right words to write or say,  not being dizzy when I stand up, not being so tired all the time, no ringing in my ears, being able to really enjoy silence, (will be something that I have never enjoyed, because I thought that everyone had this ringing in their ears...)....and most of all the PAIN IN MY HEAD WILL BE GONE. I can't wait for my NORMAL life to start, or what I guess you could call normal....

On a side note, here is a link to a youtube clip, it's a doctor explaining a little bit more about Chiari:

http://www.youtube.com/watch?v=m2DBvoVwh3I














I am fearless now, and I will remain fearless. Take the chameleon's advice.

Moe

Brain Blog Entry #1

Let me introduce myself!! My name is Maureen, and I was diagnosed with Chiari Malformation Type 1 in June of 2012. I am keeping this blog as both a journal for myself, and as a help for others who will be diagnosed with the same condition.

I guess my background story would be a good start, huh? Before we get into all of the medical stuff, let me tell you a little bit about myself.

Okay, well you know my name. There's step #1. Check that off the list, you know us Chiari people, list makers. I am a 22 year old student studying Biology in NY. I am hoping to go into the medical field someday, provided my brain doesn't have other plans. I like to run, cook, sing and help people in any way that I can. I am an EMT in the state of NY, doing mostly volunteer work for now, but hope to very soon get into paid EMS.

Another thing that is worth mentioning, is that I had gastric bypass surgery in July of 2010, and I have a blog that mostly focuses on health and nutrition, which is located here:

http://asitakeeachday.blogspot.com/

Other than that, I am just your normal 22 year old, who found out she had Chiari after 22 years of somewhat unexplainable "normality" as I like to call it. Because I thought what I was experiencing was normal, but apparently it wasn't.

So here's the beginning of my story:


I have been getting headaches, bad ones, since I was a freshman in college. I have been taking some pretty heavy duty meds to deal with them since freshman year, and they seemed to be working until the beginning of this last semester, when I started getting debilitating headaches again.

When I talk about headaches, I am not talking about "pop a couple of Tylenol and call it a day" headaches. I am talking, "these won't go away with the strongest painkillers you got" headaches. These HURT. These would keep me from going to classes because they hurt so bad I couldn't concentrate, think, be in the light, sound or anything. But they weren't migraines. Everything every body has ever said to me about migraines has never described my headaches. And I have a headache EVERY DAY. I never go a day without one.

The thing that really triggered my alertness to the situation was the fact that I was forgetting how to spell words that I KNEW how to spell. Simple words. I was also beginning to have balance and coordination issues. Problems finding the right word in speech. Increasing forgetfulness. Now, this could come with being over stressed, overworked...yeah sure. But with these headaches being so painful some nights that I wasn't sleeping AT ALL. I wasn't taking any chances.

So I went to see my primary care doctor, and she said they were a worsening of my headaches, gave me more migraine medicine, and said  I should see a neurologist. Simple enough. So I did. A month later. By this point, the headaches had gotten so bad that I was taking the max dose of Tylenol (4,000mg) every day, and was barely touching my headaches.

The neurologist told me no more tylenol, because of the risk that I was getting rebound headaches, increased my Topamax (the med I was on for 4 years prior) , and tried me on a Steroid course to try to break the cycle ( Prednisone for 10 days). I was weary about the steroids for multiple reasons. One, because of my bypass I wasn't really supposed to be on steroids, but I asked the nurse at the Bariatric Center, and she said with a short course it was okay, and two, it's steroids.

But, if it was supposed to help, I was going for anything at that point. I would have tried ground up rattlesnakes if someone had told me it would cure my headaches.

Day 1 of steroids was awful, my stomach wasn't having any of it, and my head was reeling still. I knew this wasn't going to be fun. AND I had to get on a 10 hour trip back to school. ( Did I mention my neurologist was 4 hours away from where I went to school?)

Days 2-5 went quite the same, except 5 came with extreme dizziness. I almost passed out in the shower. I called my mom in a panic thinking something horrible was going to happen to me. I had never had something like that happen to me before, I was so scared.

Days 5-8 passed by just as the other days did, and my headache got steadily worse, not better. I called my neurologist during my break before my chemistry lab, and told him the honest truth. I couldn't stand it anymore. He said he was going to prescribe me a combonation medicine called Fioricet (Tylenol, Caffiene and a Muscle Relaxer, meant for tension headaches). Well, here's the thing, my pharmacy that he called it in to is in the Capital Region of NY, and I was NOT in that area at the time, so we had a problem. Medicine there, me NOT there. Pain still there.

So, in an effort to alleviate pain, and to TRY to figure out what was wrong with me, under the advice of my neurologist, I went to the ER. They did a CT scan, told me I didn't have a brain tumor (thanks oh glorious ones for that diagnosis), told me I had "Steroid Psychosis" and sent me home with Tramadol.

I pushed through the end of my semester with these awful headaches, and came home, with an appointment with my neurologist and an MRI waiting. THANK GOD. I just wanted some answers.

After the scary MRI ( I hate those things, I have a feeling I am semi-claustrophobic, left over feelings from being fat), I went to the neuro, and he told me that I had Chiari after beating around the bush a bit. I bet it's not an easy thing telling someone that they have something that they are going to have to deal with for the rest of their lives. There is no cure for Chiari, only treatment and lifelong follow-up. Which really, really sucks.

He referred me to a neurosurgeon, who I very fortunately got in to see very quickly (I think  partially because  I was sympomatic, some Chiari diagnoses are incidental, mine wasn't.)

Dr. Lovely was his name, and being awesome was his game. He explained everything to me, in great detail, and convinced me that surgery would be the greatest chance to alleviate a lot of my symptoms. But he did emphasize that IT IS NOT A CURE. It's a TREATMENT.

And for clarification, the surgery I am having, is a combo of surgeries, usually done in trio with each other: called a Posterior Fossa Decompression ( Laminectomy, Duraplasty and Craniectomy).
Please see link for further details:

http://www.conquerchiari.org/documents/presentations/TREATMENT%20Presentation.pdf

Also, if you are new to Chiari, or want more info, this is a good website to look at:

http://www.conquerchiari.org/index.html


I don't know as of this post whether I have any other associated conditions, but I will update right before my surgery, which is scheduled to be on Monday, July 23.

If somebody comes upon this blog before then, and has any questions, feel free to ask them! Ta ta for now!