There are some days, bad headache days, where I feel like things will always be this way. NO matter how many doctors I go to, how many pills I take, whatever exercises I do...it just ends up the same way!!
I went to the ENT today, and they think my headaches might be allergy related. Well, I kind of figured that would happen, but if what he gave me works, then praise be to the living God. Because I would rather have it be allergy induced migraine like headaches than Intracranial Hypertension, which more than often, results in a surgical cure. With the ringing in my ears, constant headache, floaters in my vision and feeling like my face is going to basically blow up; if it's just allergies, I'd be surprised, but my body has done weird things before. I am going to start working with an audiologist and taking some vitamins for the ringing, because it's driving me NUTS, and there's no real medication that you can give for ringing in the ears, and I would much prefer the natural route anyway. I am also getting blood allergy tested for just about everything, so I can avoid whatever I'm allergic to, even if they find out my headaches are caused by something else.
So, at 22 let's list off my specialists I have:
an ENT, a gastroenterologist, a neurologist, a dietician, a nutritionist, a neurosurgeon, a gastric surgeon, an OB/GYN, a sleep disorders doc/respiratory doc....I think that's enough for now.
There are days when I feel like I'm 70 years old with all of the shit my body puts me through, and I don't know if anyone, truly not in this position could fully understand. I just want to go back to feeling like someone my age again, and not have to worry about taking my meds on time, or which one is going to interact with which or whether my head is going to hurt so bad I'm not going to be able to go to school, or whether I'll be able to feel my face today or whether I"ll be able to eat real food....NOT WHAT I WANT TO WORRY ABOUT.
I hope everyone else is doing well! :)
Until next time, and hopefully something happy will be here next time,
Moe
Tuesday, December 11, 2012
Monday, November 19, 2012
FRUSTRATED
Ok, so naturally my posting is fueled by something. Today it's pain.
I went about my day today, and my headache was nominal---->normal which I can deal with. But as soon as I got home, it's like my mind knew that I didn't have to keep up appearances anymore and BOOM.
I just HATE this. I hate having a headache every day. I hate having half of my face feel numb on any given day. I hate the fact that my ears ring so loud sometimes I have to have people repeat themselves sometimes because it's hard to hear over it. I hate having to grab for words some days. I hate being tired despite getting 14 hours of sleep the previous night. I HATE IT ALL.
I am 22, I should be enjoying life. Waking up every day thinking about what I can do to change the world today, and not how bad my headache is going to be, or how loud the ringing is going to be today. It's just getting old. ALREADY.
There has to be something that SOMEONE can do. I am going to try accupuncture and natural hollistic treatments for now, because, to date, my pharmacuticals haven't really been doing much. And since my neurologist doesn't really feel like doing anything except increasing my dose of current meds or adding new ones; I think it's my turn now.
I need to find a way to lower my ICP naturally. I think it's the cause of all my problems, and I will stick by that. The initial decompression helped so much because it released the pressure, and I need to find a way for the pressure in my head to stay low, and to keep releasing when it needs to ( without any more implants, meshes, plates etc)
Okay, sorry for the rant again, but pain fuels ranting for me.
Til next time,
Moe
I went about my day today, and my headache was nominal---->normal which I can deal with. But as soon as I got home, it's like my mind knew that I didn't have to keep up appearances anymore and BOOM.
I just HATE this. I hate having a headache every day. I hate having half of my face feel numb on any given day. I hate the fact that my ears ring so loud sometimes I have to have people repeat themselves sometimes because it's hard to hear over it. I hate having to grab for words some days. I hate being tired despite getting 14 hours of sleep the previous night. I HATE IT ALL.
I am 22, I should be enjoying life. Waking up every day thinking about what I can do to change the world today, and not how bad my headache is going to be, or how loud the ringing is going to be today. It's just getting old. ALREADY.
There has to be something that SOMEONE can do. I am going to try accupuncture and natural hollistic treatments for now, because, to date, my pharmacuticals haven't really been doing much. And since my neurologist doesn't really feel like doing anything except increasing my dose of current meds or adding new ones; I think it's my turn now.
I need to find a way to lower my ICP naturally. I think it's the cause of all my problems, and I will stick by that. The initial decompression helped so much because it released the pressure, and I need to find a way for the pressure in my head to stay low, and to keep releasing when it needs to ( without any more implants, meshes, plates etc)
Okay, sorry for the rant again, but pain fuels ranting for me.
Til next time,
Moe
Monday, November 12, 2012
Long time no post! Small rant...
Hello everyone!
Sorry about my absence lately, school has pretty much overtaken my life, and I have had to concentrate on that rather than my social media, but something prompted me to post today. I will write a more thorough update later, but what I really want to say, I already said in my Facebook status, and can be said by the following obituary.
http://www.emersonfuneralhome.com/fh/obituaries/obituary.cfm?o_id=1816039&fh_id=10418#.UKF8NzNtrw8.facebook
My Facebook Status from 11/12/12:
Nobody should die from Chiari. It's a very treatable disease. The medical community must educate themselves, and research must be conducted to alleviate deaths that continue to happen from this disease and it's related processes. Sleep apnea is treatable. Scoliosis is treatable. Ehlers Danlos Syndrome is manageable. Tethered Cord syndrome is treatable. Idiopathic Intercranial Hypertension is treat
able/manageable. Not all problems that can come with Chiari are listed, but listen people, most of them can be treated or managed, and it's the medical communities ignorance of this disease process that keeps people in pain, and is now taking the lives of children, young adults and adults alike. I'm sorry for ranting, but I don't want to become a statistic. I'm happy I found out that I have Chiari so that I can hopefully avoid an unspeakable fate, but physicians and researchers have to listen to patients first; listen to their stories of pain, lost jobs, memories, physical function. The key word here is listen. Listen to an underrepresented population that speaks loudly in cries of pain. Rant over.
This makes me feel even more passionate about finding ways to treat Chiari. PEOPLE ARE DYING, SUFFERING AND IN PAIN. SOMETHING NEEDS TO BE DONE. Katherine was 19, and she had her whole life ahead of her.
It's not right.
Until next time,
Moe
Monday, August 27, 2012
Finally got my pre op MRI pics to load!
Will update later, but I finally got my MRI images to load...which I think is exciting :)
These are my pre-op images, I will try to get a post op disk....
Just thought it was interesting...that's all.. Talk to you later :)
Moe
These are my pre-op images, I will try to get a post op disk....
Moe
Friday, August 17, 2012
Week 3: Update
Well,
Thought it was time to get on here and give y'all an update.
Feeling better than crappy, but not feeling the best. Still having headaches when I change positions.
I take pain killers every day, except when I am driving, and the whole day, I wait for the moment when I can relieve the pain from my head. And it's not my neck, because I have almost full mobility of it now. I mean, it's sore from driving and I need a day of rest between driving days, but it doesn't hurt as much as these headaches that I am having. I have been instructed by both the ER doc and my surgeon, Dr. Lovely, to increase my intake of caffeine and to definitely take my pain meds when I need them. I have an MRI scheduled for next Wednesday to make sure that the fluid he saw on my CT scan hasn't gotten bigger.
The only thing I keep getting frustrated about is that I had this surgery to rid myself of these debillitating headaches, and I came out with ones that are worse. Don't get me wrong, I got many benefits; I lost the feeling that I was drunk while I was walking due to lack of balance, my numbness and tingling my face and hands, and many more puzzling symptoms.Also, I wanted to get off a lot of the meds I am on, ( Topamax, Amitrypiline, Valium, Hydrocodone, Fioricet, two courses of steroids, the list goes on)
Well, seeing as I am falling asleep from all the meds that I'm on I 'm going to cut this off.
I promise the next blog will be longer and I will write it during the day when I am not so drugged up....
God Bless everyone! :)
Moe
Thought it was time to get on here and give y'all an update.
Feeling better than crappy, but not feeling the best. Still having headaches when I change positions.
I take pain killers every day, except when I am driving, and the whole day, I wait for the moment when I can relieve the pain from my head. And it's not my neck, because I have almost full mobility of it now. I mean, it's sore from driving and I need a day of rest between driving days, but it doesn't hurt as much as these headaches that I am having. I have been instructed by both the ER doc and my surgeon, Dr. Lovely, to increase my intake of caffeine and to definitely take my pain meds when I need them. I have an MRI scheduled for next Wednesday to make sure that the fluid he saw on my CT scan hasn't gotten bigger.
The only thing I keep getting frustrated about is that I had this surgery to rid myself of these debillitating headaches, and I came out with ones that are worse. Don't get me wrong, I got many benefits; I lost the feeling that I was drunk while I was walking due to lack of balance, my numbness and tingling my face and hands, and many more puzzling symptoms.Also, I wanted to get off a lot of the meds I am on, ( Topamax, Amitrypiline, Valium, Hydrocodone, Fioricet, two courses of steroids, the list goes on)
Well, seeing as I am falling asleep from all the meds that I'm on I 'm going to cut this off.
I promise the next blog will be longer and I will write it during the day when I am not so drugged up....
God Bless everyone! :)
Moe
Thursday, August 9, 2012
ER time!
Hello all,
So, this post is a little late, but I haven't had much time between doctor's appts, getting ready for school and sleeping, so here we go:
In a previous post, I mentioned that I was having headaches again. Well last Sunday, I decided enough was enough, and we headed to the ER to try to figure out what was going on.
We arrived at the ER, and waited in the waiting room, and people were obviously being triaged based on their complaints, rather than their order of entrance because I was triaged pretty late after I came in, it took about 2 hours after I arrived to get into the actual Emergency Department.
We got into the ER, I got into a gown, and a nurse came in and got my history....yes I am nauseous, no I don't feel unsafe in my home....yes I have pain....la la la la...blah blah blah...
It seemed like forever until the doc came in. I told him what was going on, that I had had surgery two weeks prior and I was having positional headaches ( whenever I sat up or stood up) and they were pretty much overtaking me. He did his usually doctor things, listened to my heart and lungs, asked me the same questions the nurse had asked me,told me he was going to call my surgeon and then he left. Oh, he also asked if I wanted something for pain, and I responded with a "yes please", because this headache seemed to be overtaking me at this point.
It was good that I was blessed with a wonderful nurse, Gloria, who liked to laugh and laughed at the fact that my brother and I were threatening each other with medical procedures ( we are both EMTs) and quizzing each other on EMT stuff to pass the time. ( Another nurse actually stuck her head in to see if a doctor was in there....lol)
I got some good pain meds, and some Zofran ( a miracle drug which made my nausea disapear) The pain meds made me a bit loopy, but they made my headache go a away for a few sweet hours. My surgeon wanted a CT scan and some blood work, so they did that, and we waited, and waited and waited......
They didn't find anything immediately dangerous, so they sent me home with some Zofran, and some pain meds and told me to talk to me NS the next day,
The next day, Dr. Lovely said that he did see some fluid, but he didn't think it was enough to cause my headaches, but he did want to see me the next day.
SO, the next day ( this being Tuesday) I went to Dr. Lovely's office, and he told me that me incision looked good, and that the small build up looked like it could be anything, and since I was so newly post op, it could be blood, or it could be a small leak of CSF ( Cerebrospinal Fluid) but he put me on a course of steroids for
6 days to see if he could get any fluid that
So here I am. hoping these steroids help or else it's back to the drawing board. Dr. Lovely is telling me to be patient, but let me tell you, it's REALLY hard....
Ok, so that's the story for now.....
I hope you all are well!
Maureen
So, this post is a little late, but I haven't had much time between doctor's appts, getting ready for school and sleeping, so here we go:
In a previous post, I mentioned that I was having headaches again. Well last Sunday, I decided enough was enough, and we headed to the ER to try to figure out what was going on.
We arrived at the ER, and waited in the waiting room, and people were obviously being triaged based on their complaints, rather than their order of entrance because I was triaged pretty late after I came in, it took about 2 hours after I arrived to get into the actual Emergency Department.
We got into the ER, I got into a gown, and a nurse came in and got my history....yes I am nauseous, no I don't feel unsafe in my home....yes I have pain....la la la la...blah blah blah...
It seemed like forever until the doc came in. I told him what was going on, that I had had surgery two weeks prior and I was having positional headaches ( whenever I sat up or stood up) and they were pretty much overtaking me. He did his usually doctor things, listened to my heart and lungs, asked me the same questions the nurse had asked me,told me he was going to call my surgeon and then he left. Oh, he also asked if I wanted something for pain, and I responded with a "yes please", because this headache seemed to be overtaking me at this point.
It was good that I was blessed with a wonderful nurse, Gloria, who liked to laugh and laughed at the fact that my brother and I were threatening each other with medical procedures ( we are both EMTs) and quizzing each other on EMT stuff to pass the time. ( Another nurse actually stuck her head in to see if a doctor was in there....lol)
I got some good pain meds, and some Zofran ( a miracle drug which made my nausea disapear) The pain meds made me a bit loopy, but they made my headache go a away for a few sweet hours. My surgeon wanted a CT scan and some blood work, so they did that, and we waited, and waited and waited......
They didn't find anything immediately dangerous, so they sent me home with some Zofran, and some pain meds and told me to talk to me NS the next day,
The next day, Dr. Lovely said that he did see some fluid, but he didn't think it was enough to cause my headaches, but he did want to see me the next day.
SO, the next day ( this being Tuesday) I went to Dr. Lovely's office, and he told me that me incision looked good, and that the small build up looked like it could be anything, and since I was so newly post op, it could be blood, or it could be a small leak of CSF ( Cerebrospinal Fluid) but he put me on a course of steroids for
6 days to see if he could get any fluid that
So here I am. hoping these steroids help or else it's back to the drawing board. Dr. Lovely is telling me to be patient, but let me tell you, it's REALLY hard....
Ok, so that's the story for now.....
I hope you all are well!
Maureen
Saturday, August 4, 2012
I forgot to mention: Chiari Walk 2012!
Chiari Walk 2012! September 22, 2012!!
Mark your calendars!!
Here is a link to the site to sign up, there is one in each state, but I will be at the one in NY!
:)
http://conquerchiari.org/ccwaa/sites-2012.html
Mark your calendars!!
Here is a link to the site to sign up, there is one in each state, but I will be at the one in NY!
:)
http://conquerchiari.org/ccwaa/sites-2012.html
The return of the headaches....
So, as you know, I had this surgery as a way to alleviate my debilitating headaches that I have been having every day for the last 6 months. I thought that those headaches were the worst things that could ever happen.
Well, I was wrong, I have been having these headaches since Monday, and they are, by far, the worst headaches that I have ever had. I don't think that someone's head could hurt more. Maybe if someone was sawing into your head while you were awake, and then pouring salt into the wound. That's pretty much what these headaches are comparable to.
What is frustrating to me is that I had this surgery to get rid of this pain, and I had about a week of no headaches, and then they come back with a vengance, as if to say " did you miss me? "
I, in my heart of hearts, and with my immense googling skill, think I may have a CSF leak, because I also have a bump on the back of my head, that is soft, not painful, but it's getting bigger every couple of days. Along with the fact that standing up makes me feel like someone ninja kicked me in the head.
It seems like I can't get through something without setbacks. But that's life, you just have to play the hand you are dealt.
Hope you all are well.
Maureen
Well, I was wrong, I have been having these headaches since Monday, and they are, by far, the worst headaches that I have ever had. I don't think that someone's head could hurt more. Maybe if someone was sawing into your head while you were awake, and then pouring salt into the wound. That's pretty much what these headaches are comparable to.
What is frustrating to me is that I had this surgery to get rid of this pain, and I had about a week of no headaches, and then they come back with a vengance, as if to say " did you miss me? "
I, in my heart of hearts, and with my immense googling skill, think I may have a CSF leak, because I also have a bump on the back of my head, that is soft, not painful, but it's getting bigger every couple of days. Along with the fact that standing up makes me feel like someone ninja kicked me in the head.
It seems like I can't get through something without setbacks. But that's life, you just have to play the hand you are dealt.
Hope you all are well.
Maureen
Friday, August 3, 2012
Update
Hello everyone!
I just wanted to let everyone know that I am still alive, and relatively well.
I am still dealing with these headaches that I mentioned in the last post, and I think that I may just have to get them checked out, because they are starting to become slightly unbearable.
My stitches are out! It's nice to be able to shower normally, and know that you aren't being held together by string. ( well, you know what I mean) I have never had stitches though, so the removal was a new experience for me, and the whole area has been really itchy afterwards. It's taken a lot of willpower to leave it alone...I should have probably received a cone or something from the doctor's office so I couldn't touch it LOL :p
Anyway, that's pretty much all for now. I'm starting to nod off since I had to take 2 vicodin to get this headache to bearable tonight. Hope everyone is well!
Love ya,
Maureen
I just wanted to let everyone know that I am still alive, and relatively well.
I am still dealing with these headaches that I mentioned in the last post, and I think that I may just have to get them checked out, because they are starting to become slightly unbearable.
My stitches are out! It's nice to be able to shower normally, and know that you aren't being held together by string. ( well, you know what I mean) I have never had stitches though, so the removal was a new experience for me, and the whole area has been really itchy afterwards. It's taken a lot of willpower to leave it alone...I should have probably received a cone or something from the doctor's office so I couldn't touch it LOL :p
Anyway, that's pretty much all for now. I'm starting to nod off since I had to take 2 vicodin to get this headache to bearable tonight. Hope everyone is well!
Love ya,
Maureen
Monday, July 30, 2012
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
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
Friday, July 27, 2012
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 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
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
Friday, July 20, 2012
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
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
Wednesday, July 18, 2012
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!
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