Shorty

Hey all!
This will be a short post as I am really exhausted from work.

I was featured in the BensFriends April Newsletter

April Newsletter - Click Me

Yay me! :)
BensFriends provides support sites for rare diseases/disorders. Includuing Chiari Malformation.
I am a member of chiarisupport.org There is a link on the right as well :)

Chiari Walks - September 17th, 2011

ConquerChiari
ASAP

Both sites above have walk sites listed in registered states.
The ChiariPeople of Pa will be doing their walk again, this year their funds will go to Wishes and Rainbows
They are a non-profit organization for those with Chiari Malformation and Syringomyelia.


I hope to get on VERY soon and post. I have much to say.
With that I say goodnight.
-Alicia

Ooo purple-y

It is officially the first day of Spring tomorrow!!

These sprung up the other day in the front yard. Because they are purple...the Chiari awareness color...I shall dub these Chiari flowers. For now; until I find other purple ones...lol

I've been trying to think on topics for the blog. I've realized that the more time I spend on thinking about topics..I'm not actually doing any blogging. I've got ideas on things I'd like to write about written on scrap paper everywhere throughout my room, in my purse, on my desk etc.

The one thing with Chiarians is our great memories. I could have a great idea...if I don't write it down..its more than likely I will forget it almost instantly. That usually happens when I'm doing something else. So I write everything down. 9/10 times I have the same great ideas lol. On my day off work, I may go through all the scrap notes and I realize I have about 5 of the same notes/ideas written down. So then I organize my chaotic scraps....into one big list for that week (or whatever the time frame of my cleaning is) and start all over again. I have a few notebooks with ideas written in them. I went as far as organizing separate notebooks for different topics...I have one for crafting/creativeness, a Chiari related notebook, and a general because most of my ideas fit into the first two. I like to call it Chaotic Organization. What do you think?

Maybe not chiari related but oh well...I have decided to quit smoking. I started last monday. I've had about 2 a day since. Thats not bad at all. My mood has been different. I've felt hyper and in higher spirits. I'm hoping this all helps me. The nicer weather...maybe I can get myself outside more. I'd love to spend as much time in sun as I can. I want to start taking Coco for walks. I want to get myself back into shape.

Exercise can be hard on someone with Chiari. You have to weigh your options with what you can and cannot do. First you need to know your own limitations. Do not over strain yourself. One of the #1 causes for Chiari pain is straining yourself (couging, sneezing, stretching, etc) even if mild. Walking is one of the best ways. If you know you can do more, than do it! Just don't over do it.

I want to spring clean my room. Maybe re-paint the walls. I wanted to paint last year but didn't have the money. I really don't this year either...so it'll depend. Here is another don't over do it...another thing that sucks...you really have to take your time doing things. Sometimes I get into OCD cleaning mode (a lot when it comes to my stuff) and I can't help myself...I start going at it like crazy. I have to make myself stop and take a break because I can and will over exert myself. If I do I will pay for it badly.

A repeat of another post....for anyone looking for a support site...Chiari Support go there...it is a great place to meet other Chiarians...get support, get answers and help. Its a big Chiari Family!

Also...here is something I got from the support site. If an ice pack or heat wrap helps with your pain..try this if you do not have one.

Rice Bag
You will need:

• cloth, soft, like flannel, cut 5" wide by 12" long

• 1 Large bag of rice (buy from the dollar store) its cheeper

• thread to match material

Directions:

Sew 3 sides, turn the bag inside out, then fill with rice, but leave about some room to sew the top by your sewing machine (or by hand), then turn the edges inside the bag for a nice hem, sew together, and that is how you make it.  It freezes as well as put into the microwave for heat.

Other ways of making a Rice Bag:
Another option
And more

I'm going to make one and I'll post pictures :)

-Alicia

Ice is slippery...

A very quick post.

I want to share a link with everyone. I stumbled on this chiari support forum while I was googling topics for the blog. Click it and check it out! I also have a link on the right side that will take you to my page on the forum. 
Chiari Support

Hope everyone is staying safe with the crazy weather out there! Watch out for that ice! I nearly got knocked out the other day in my boyfriends driveway. I could've either went backwards and cracked my head and back on the hood of my car or face-planted the concrete in front. Somehow I slid myself to the side of the garage and kept myself up. That was hard to do, considering my balance isn't too great off the ice.

Bye for now!




Snow/Ice Covered trees at work. 1/26/11

Front of work covered in snow and ice. 1/26/11

 

The New Year...

Happy New Year!!

I'd like to compile a list of support groups. If you know of any please post them in a comment or contact me with the information please.

I'm from Pennsylvania. The local support group here is called ChiariPeople of PA

I don't have much today as you can see ^.^
Any suggestions for topics, if you'd like me to feature your story, have an article to post, or anything else, please comment it!

Share this on your site!
Thanks,
Alicia

Chiari in the Media

Hope you all had a wonderful Thanksgiving! I have been sick since then. Sinus Infection, Bronchitis, blah. Day number 15 for this. I went to the doctors on Tuesday and was given meds. Hopefully they work.

My boyfriend gave a presentation in his class this past week on Chiari Malformation. I'm happy he did so; he's showing support and spreading awareness! Too bad I was sick and had to miss it. I would've loved to sit in or act as a visual aid.

Anywhoo...onto Chiari in the Media:

We want more awareness right? So far it has been on some local news stations, newspapers, tv shows like House, Private Practice, and Extreme Makeover: Home Edition, and Discovery Health.
(If you have anything I don't list...please post it in a comment! I'd love to see it!)

Although they may not all be the best representations of Chiari Malformation...it is at least getting the name out there. Spreading Awareness is a big deal in helping with research.

TV:
Discovery Health:
"Chiari TV Special"

CSI Las Vegas Episode
"Internal Combustion"

Private Practice
"A Better Place To Be" (google for link)

House
"The Choice" (google for link)

News Articles:
HealthMad
Living with Chiari

Conquer Chiari
Conquer Chiari Walk 2010

WTOV - 9 (Ohio)
Hundreds Walk for Chiari Malformation

WKBW-News 7
Chiari Malformation & Syringomyelia

ABC-Good Morning America
Medical Mystery: The Boy Who Couldn't Sleep

KULR - 8 (Montana)
Chiari Malformation

The computer is freaking out from searching right now...so I may post more later! Again, if you have any links on news articles, videos, etc please post them!! Thanks!

Don't forget to share my blog on your site and help spread Chiari Awareness!!

-Alicia

Research

First off...

Happy Thanksgiving!!

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Onto research...

Here is what I've found on some recent research going on for CM/SM:

(I've only posted a few.)

DUKE CENTER FOR HUMAN GENETICS STUDY
The Duke Center for Human Genetics is actively recruiting families who have TWO OR MORE family members with Chiari type I malformations (CMI), with or without syringomyelia. These family members must be related to each other by blood, and BOTH must be willing to participate. Our work is centered on determining whether or not there is a genetic cause to the development of CMI. Hopefully in the future this will lead to better ways to diagnose and treat CMI.
Participation in the study involves:
1. Read and sign consent forms
2. Provide a blood sample from family members both with and without CMI
3. Family history telephone interview
4. Complete a medical history questionnaire
5. Review medical records and MRIs to confirm the diagnosis of CMI/S
For more information or to enroll in the study, please contact the study coordinator at 1-877-825-1694 or chiari@chg.duhs.duke.edu.

(Taken from www.csfinfo.com/research)


Study by ASAP

Prospective Evaluation of Cognitive Function (Brain Fog) Among Individuals with or without Syringomyelia Before Decompression Surgery as Compared to Post Surgery

Purpose of the study: Patients with Chiari I Malformation often complain of cloudy thinking which can impair their productivity at work and their personal interactions. Improved understanding of these cognitive (thinking) problems in patients with Chiari I may lead to better treatment strategies. Research is required to answer these important questions: 1) Do cognitive (thinking) problems in patients with Chiari I Malformation result directly from the malformation or from another cause? 2) Do cognitive problems improve after surgery?
Researchers at Spalding Rehabilitation Hospital, Aurora, Colorado, have designed a prospective clinical research study of 50 patients with Chiari I malformation who are candidates for surgery. The intent of the research is to evaluate if Chiari I malformation affects cognitive function (normal thought processes). Dr. Cammy Chicota, a clinical neuropsychologist, is the Principal Investigator for this study. Standardized interviews and pen-and-paper tests will be used. Patients will be tested before and again 3 months after surgery to see if the surgical procedure resulted in any changes in these tests. A single neurosurgeon, a single type of surgical procedure, and a sole neuropsychologist will be involved, which makes it likely that any change after surgery will be related to the surgical procedure and not to other factors. An ASAP grant in the amount of $24,020 has been awarded to support this important clinical research study.

(Taken from http://www.asap.org/) More research posted there.


Enjoy your turkey!:)Well that's all the time I have for now to look things up! I will post more when I have the chance!

Handbook

I found this .pdf handbook on ASAP. It's 43 pages and has a lot of information on CM and SM.

A Handbook for Patients and Families

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Another repost:
Living With Chiari

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I'm hoping to have more time to post stuff. Eventually I'd like to post other Chiarians stories! If you would like to share your story on my blog, send me message on facebook!


Comments are appreciated! Suggestions for what you would like me to post about are welcome too:)

A Real Horror

My story

I’ve always had headaches and migraines. During 7^th-10^th grades they got progressively worse. It was sophomore year in March/April of 2003, when the pain got the best of me. I was waking up in the mornings with so much head and neck pain, that it forced me to throw up. The puking eased the head pain for awhile. I was missing a lot of school or was late because sometimes it was so bad that I just couldn’t deal with it. There were days where I couldn’t move my neck or turn my head at all. Some other symptoms I experienced were numbness/tingling in my limbs, lightheadedness/dizziness, decreased sensitivity to temperature, balance problems and more. Finally I went to my family doctors to see what was going on. He had me try Imitrex for ‘migraines’. It didn’t help at all. In fact, it only added muscle pain in my shoulders while it was in my system. I went back to him again, this time while my head wouldn't turn. He ordered an MRI and then referred me to a Neurosurgeon without us even seeing the results.

I saw Dr. Robert Schlegel of York Neurosurgical Associates in York, Pa. Dr. Schlegel ordered some more MRI’s and there we found out I had something called Chiari (Key-r-ee) Malformation and Syringomyelia (sear-IN-go-my-ELL-ya). At the time I didn’t fully understand what it was but I got the gist. I understood that the lower part of my brain was growing down through the hole in my skull (foramen magnum) and putting pressure on the back causing the head/neck pain and vomiting. Also, that I had a pocket of fluid in my spine that was caused from the pressure in my head. Dr. Schlegel told us about Decompression Surgery and how it could help relieve the pressure but was not a cure. They would remove a small part of the base of the skull. And if they had to, part of the cervical vertebra (C1). (I wasn’t taking it all in at the time. When I realized I had to have surgery I was worried about the fact that part of my hair was going to be shaved off and that was pretty much it.)

Surgery was scheduled for July 25^th, 2003 at York Hospital. Dr. Schlegel and Dr. Winer performed the surgery. I was told afterwards that it was good they got in there when they did because the base of my skull was eggshell thin. I was in ICU (Intensive Care Unit) for a little while recovering. The pain after surgery felt much worse than before. It felt like my brain was trying to push out from every opening it could find. There were constant ‘explosions’ of pain going off inside my head. I was constantly puking from the pain. I couldn’t keep any food down. I was ‘eating’ ice-chips. The pain medicine they gave me didn’t seem to help. I hardly slept. My mom stayed with me every night because I didn’t want to be alone. I was finally moved to a regular room but unfortunately, I was put on the pediatric ward. There was always some kid crying or screaming, that didn’t help. All I wanted was to go home. They wouldn’t let me leave until I was able to get food down and keep it down. I also need to get up and walk around daily. My walks around the nurses’ station were blurry. I couldn’t see (because I wear contacts/glasses and didn’t have them because I was in too much pain to bother) and was very dizzy. I was in the hospital for a week.

I was finally able to go home when I kept some food down. Dr. Schlegel sent me home with Percocet for pain; which did not help at all. We hardly made it half way home before I started vomiting again. Every bump and turn was murder. The following week I had a follow-up MRI and visit with Dr. Schlegel. I was still having trouble keeping food down. Mom bought something like Pedialyte and I was at least able to drink that for some kind of nutrition. I still couldn’t sleep and the pain was not getting any better. Dr. Schlegel prescribed a different medicine for pain and to help me sleep. After taking that (I do not remember what it was) the pain started to subside and I was finally able to get sleep. I was beginning to keep food down. It took about 4 weeks to recover and start getting back to being myself. When school was starting I was given the chance to hold off until January, I did not want to fall behind. I fought hard to start school and live through the pain I still had. I was not symptom-free. It was not the same pain. Nowhere near as bad. I was not puking every day. I am restricted in the activities I can do. I can no longer ride roller coasters, play contact sports, and things like that. I have friend 'head gaurds' at rock concerts when jerks throw glass beer bottles through the crowd and mosh. Haha they cover and protect me well!

Today I still have head and neck pain, numbness/tingling in my hands and feet, lightheadedness and dizziness, balance issues, trip over my words, etc. I may look fine and normal, but looks can be deceiving. Not to say that I’m always in pain, but Chiari is usually kicking me somewhere.

Chiari Malformation affects about 1 in 1,000 people. 

Comments are appreciated :)

Treatment and Pain Management

Treatment
(Your doctor will suggest the best option)

Posterior Fossa (Brain) Decompression Surgery - A piece from the base of your skull and sometimes the top part of the C1 vertebrae is removed. This is to allow more room for the brain and to relieve pressure. The relief of pressure should help the flow of Cerebralspinalfluid (CSF).

Illustrated explanation

Pain Management

For me personally, when I have head and neck pain... I go right for my icepack. It's a rectangular shape and molds around my neck. It freezes the pain. It doesn't always work; but 9/10 times it helps better than heat for me.

There are the usual pain relievers...which don't work at all for me. (Tylenol, Ibuprofen, Aleve, etc)
 As always consulting your doctor is the best for pain management. It is hard to find things that truly work to stop the pain. There are migraine preventative medicines and ones to take at the onset of a migraine. Although, if the pain is not a normal headache/migraine...well we're pretty much screwed.

I am not a doctor. My information comes from personal experience and Internet research.


Other Stuff....
Just a repost for the article on Chiari...Please read the link:) Click it, read it, repost it on your site/blog/fb/twitter whichever!

Living with Chiari on Health Mad

Also, I just recently got my MRI's on a CD so I will be posting them soon.

Thats all for now:)
-Alicia

Symptoms List

Every person with Chiari is affected differently. This is a general list of symptoms.

• Headaches/Migraines
• Neck/Head pain
• Pressure in the head/neck
• Dizziness
• Lightheaded
• Tingling/Numbness in extremities
• Balance problems/clumsiness
• Memory problems
• Vision problems (spots, double vision, 'halos', etc)
• Restricted Movement
• Pain with bright lights and loud sounds
• Ringing in ears
• Decreased sensitivity to temperature
• Problems swallowing
• Vertigo
• Fatigue
• Muscle weakness
• Nausea
• Burning sensation in extremities
• Slurred speech
• Problems with Depth Perception

The list could go on as there are many more.