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

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

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

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

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

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

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