Essentials

Time is moving way too fast. I feel like I'm sleepwalking or something. I don't know how months are going by and then BAM its 2014. January is here. Oh and it's already the 12th. WTF. What am I doing? Where the hell did Halloween, Thanksgiving, Christmas go?



------------------------------------------------------------------------------

I have discovered some uses of essential oils. (If I've posted about this...well here I go again because as I say above I don't know where time has gone and my memory is gone with it I guess.) Eucalyptus and Peppermint oils are amazing. Last year (2012..) for Christmas, Joe got me a set of 6 oils. I wanted to try them since I've heard some people use them for head pain and such. Well, as a Chiarian you and I know that head pain is and can be the worst ever and sometimes ice packs are our only friends. One day I tried the eucalyptus oil. I put a few drops on a cotton ball and rubbed it on my temples, forehead, and neck. Within seconds those areas began to get cold. A very cool sensation. It was cooling and relaxing the area. After a few minutes it was easing the head and neck pain. It didn't completely get rid of it, but it was bearable. It was like a friggin miracle. It felt amazing. I felt like I was cheating on my ice pack though. After the oil sort of wore off, the pain was almost gone. Partly because the head pain itself had been gone and because I was relaxed I guess from the oil. Next time I had bad head pain, I tried it again. Needless to say, I went through the small bottle of eucalyptus oil very fast. Joe joked that we can never go to Australia now because I'll be attacked by the Koalas.

I tried the Peppermint oil after the other ran out. It works just as great. You will smell like a candy cane for a bit. There were days when I had to use both oil and ice pack. And reapply the oil a few times throughout the day. But, like I said, it helps ease the pain enough that you're not laying in bed all day (Most of the time). I'd definitely recommend trying it. You can dilute it with water if you want to try it that way. Google directions on that. I tried it without diluting it. Purchased mine here: Amazon

EDIT/to above. Information on diluting oils: National Association for Holistic Therapy 

So this year (2013..) for Christmas, Joe got me 2 bottles of eucalyptus and a peppermint. My sister, Karen, made me a microwave/ice rice bag with eucalyptus and a locket with eucalyptus in it.
Mom got me some Bath & Body Works Stress Relief Eucalyptus Spearmint/Mint Shampoo, Conditioner, and Body Wash. $10 per bottle regular price.
John Frieda also has one called Root Awakening. You can find it at Wal-Mart, Target, Rite Aid etc..

Now this brand has a different effect. I love this and the B&BW. Both are great for stress relief and help with head pain in the shower. However, this one is cheaper, about $3-5 per bottle. And it also gives the cooling/ice affect when you leave it on for a minute or so. Definitely better when your head hurts.

Have you tried using oils? What do you think? Do you have any other items you use? Let me know what you think!

Remember to LIKE Chiari-Life on Facebook
Visit BearlyBurnt
#Chiarilife

20 Things

Today is the last day of September...which means it is the last day of Chiari Awareness Month. This does not mean that we stop with awareness. This just gives us more reason to keep it going!:)

 

My Chiari Awareness Necklace

 

20 Things about my Chiari

1. Diagnosed when? March/April 2003, I was 15 years old

2. Decompressed, if so when? Yes, July 15th, 2003.

3. Other additional conditions, if so which ones? Syringomyelia, Depression.

4. Have you personally met someone else with Chiari? Yes, Some awesome Chiarians and their families from the ChiariPeople of Pa support group

5. Most challenging symptom(s)? Head and neck pain...that would be the worst...but you said Challenging...so I would say the depth perception/balance issues along with the speech/slurred words/tripping over words. They are the most challenging as it interferes with walking and talking. Walking...I trip...fall...miss steps...walk into walls...pillars..etc you get the point. Talking....I may repeat the same word over and over again and not be able to stop myself to get the next word out. Or it will come out in a jumbled mess. That makes work challenging. I usually laugh it off...its the easiest thing to do although it is frustrating.

6. Most embarrassing Chiari moment? Oh wow...so many. The time I went to take my pants off..changing into pjs or something and I literally fell out of my pants. Note to self: Sit down when taking pants off. Walking straight into the pillar at work. Walking into the wall at work. Lets just say there are a lot.

7. Biggest Chiari frustratsions(s)? The pain. Having to explain yourself to others because they do not understand. The assumption because I look ok that I'm feeling ok/not in pain...so carry on as usual. Chiari itself. Not being able to do "normal" things.

8. Number of medications in your personal medicine cabinet? Are we talking perscriptions or overall? I've got Topamax, maxalt and the rest are OTC which don't help much.

9. Number of Doctors/Therapists stored in your phone? Chiari related....3 if you count my regular doc

10. Do you attend Dr appointments solo or with support? Used to be with someone in the beginning. Now its usually solo.

11. Biggest regret that Chiari has created? I feel like I lost my teenage/20's years of hanging out with friends and partying. That sort of thing. I don't know when I'm going to feel like absolute shit...so I don't plan much ahead. I try not to drink alcohol so I don't get head pain from that.

12. Biggest lesson that Chiari has taught? It has taught me to be strong. It has taught me that there are more important things in life. It has taught me to grow up and not take everything for granted. Although, there are days I lose sight of that, the pain just knocks a reminder back in.

13. Favorite non-medicinal therapy? Ice packs. Seriously I'd walk around with them as a Icepack helmet if it would stay cold 24/7....

14. Worst medicinal side effect? When I first started taking topamax (which is to help me with my  headaches and migraines (not the chiari headpain)) the initial sideeffects heightened my already numbness and tingling. It was terrible. I thought something was seriously wrong. I saw my NS and he had me see the Neurologist and we did tests etc and then cut the Topamax dosage in half...half in the am/half pm...after about a week it went back to my normal numb/tingling....

15. Biggest change in your life since diagnosis? I'm overly aware of everything I do and how it affects my head. Whether it be an activity, excercise, or even going to a concert (I've posted that before about my friends covering my head when assholes throw beer bottles at concerts)

16. Worst medical test? Only had MRI's, CTscan, and the Neurological exam...they weren't that bad...the MRI's could be less noisy though...

17. Hardest thing to give up because of Chiari? Rollercoasters! I had finally just started to get on them...I was addicted. Nevermore.

18. Have you become more or less religious since diagnosis? I don't think it has changed much.

19. Where do you find enjoyment now, that you didn't before? I have met a lot of new people from all over the world with this disorder through facebook, twitter, and other networks. I am also artsy so I spend time working on different things.

20. Favorite Chiari websites?

They are all actually listed on the right hand side of this page:)

If My Life Were a Movie...

Chiari Carnival #4: Summer 'Blog'buster
Topic: If My Life Were a Movie

For a month I've been thinking about who would play me in my movie. My first thought was Julia Roberts. I mean she's an amazing actress and the red hair. LOVE it. Then I was thinking about how my movie would play out. If I had Julia...she would play my older self. I don't know that part of my life yet. So I started focusing on who would play my younger self. I tried to think of someone who would fit me, could look like me, whose personality could fit mine. The best I came up with was Emma Watson or Alexis Bledel. They both have book nerd characters. But something about them still didn't fit. So I went to the internet and tried to find my celebrity look-a-like. Yeah I really did that. What were my results?
64% match with Charles Manson. Nice. So I picked a better picture and tried it again. I did get Alexis Bledel as a result along with Kristen Bell. I still don't feel it. Then I thought, well hell this is my movie, about me...who could play myself better than myself...? I was in a commercial as a zombie before. (It's the truth) I was also in a carpet commercial when I was little. I have experience. (HA.)

When it rains, it pours

Chiari Blog Carnival #3: When it rains, it pours.
Topic: Dealing with difficult people in addition to dealing with a difficult illness.

"But you don't look sick?"
(Photo provided by Eliza Jayne Photography)

The first thing that comes to my mind is "But you don't look sick!?" Yeah, we get that alot. Chiari Malformation is considered an invisible illness because you don't usually see the symptoms on the outside.
Of course I look normal.
You can't see the pressure in my head.
You can't see that it feels like my head could explode at any minute.
You can't see that my hands and feet are numb and tingling.
I may stumble or walk into something, but I just look clumsy to you...You don't see my balance and depth perception problems.
You don't hear the ringing in my ears.
You hear my speech slurr or I trip over my words. You laugh, I laugh. But do you know why it happens? Does that come to mind when you hear it?
You don't see me almost black out from getting dizzy and lightheaded if I drive too fast over a hill.
(I know why I can't ride rollercoasters.)
I could continue to go on and on with the list.
I have tried looking at things from the opposite point of view. The other person can never fully understand what you are going through. They may try to relate by sympathizing with you over something they have gone through. "I've had surgery once. I went in to get my tonsils taken out"
Oh ok...not quite on the same plane as brain surgery. "So you're cured now that you've had surgery right?" No surgery is not a cure, just a form of treatment. "Oh."
People do not understand why surgery if its not a cure. What is the point of surgery?

When I first had major problems I went back to my family doctor a few times for "migraines". Each time I was given a different medicine or something to try. Finally he ordered an MRI after I went in and couldn't turn my head at all. I was lucky enough to be referred to a NS who knew of Chiari and wasn't afraid to work with it. He has followed up ever since. I was diagnosed in 2003.
A lot of people go through several doctors, neurosurgeons, neurologists, and other specialists before they are diagnosed.
After dignosis its a mixed feeling. You're relieved because you finally have an answer for what you're going through. But on the other hand....what do you do with it?
You barely understand it, how will anyone else? So you begin to tell your family and then your closest friends. Again...they don't really experience what you're going through. They know what you're saying. They don't feel the pain. It's hard to sympathize with the unknown.

This topic fits well with what happened two weekends ago. We had the bachelorette party for my best friend, Abby, on April 20th. We all took her out to dinner. Then we were off to the bar across the street from her house. We had a limo scheduled to pick us up about an hour into that as surprise. The limo would drive us around town to various bars for the night. Now let me first say I was the only female in the bridal party aside from the bride. Abby and I have a lot more male friends. She had me (her maid of honor) and 3 boys her bridesmen/maids. The bachelorette party was mostly men. haha.
Anways. We went throughout the night all was well. I was mostly pain-free all day. As it got closer to the end of the night...my head started. (I do not drink and did not.) It was about 12:30AM and we had about 2 hours to go. I couldn't crap out and leave. We went for 4th meal at taco bell. I didn't get anyting as I felt nauseous. I thought I was going to puke from the smell when the food got into the limo. But I was ok. Everyone was offering medicine or alcohol (lol thanks but that won't help?) and what they could do? My head continued to get worse and the pressure in the back of my head grew. We parked across from Abby's house and thanked the driver. We walked over and I knew I was about to vomit. I whipped my hair up in my hand out of my face. I projectile vomitied on the sidewalk. It was like some kind of Exorcist move. It was a good thing no one was in front of me. Abby said something like "you puked like a rock star" Everyone was like "WHOA" because it came out of nowhere. They were all trying to help hold my hair and rub my back and ask if I was ok. At that point I to be left alone for a second in case there was more.

Bridesmaids L to R:
Mike, John, Abby (Bride), Me, Brad

The good thing about it...I made it to the end of the night, Abby had a great time. And my friends actually got to see something that Chiari does to me. They were able to see a bit of the pain I was in. If they couldn't see the pain on my face...they saw it when the vomit shot out of nowhere.

Don't forget to check out the rest of the Carnival!

Ides of Mayhem

Chiari Blog Carnival #2 - Ides of Mayhem
Topic: Alternatives to breaking down, falling apart or cracking up. 

Hmmm Alternatives to breaking down, falling apart, or cracking up....
I'm having a blank and don't know where to start.
Sometimes you just have to break down, as with any other situation, you can't hold in all your frustration and confusion. You can't hold in your tears. The longer you hold something in, the harder it will be when it all comes out. We are strong. We hold a lot in. Finding other Chiarians to confide in is a great way to release a lot of the frustration you may not be able to get out around others who don't quite understand.

When I have a bad Chiari day...thats when I want to break down, I want to cry and fall apart. I want to scream and yell "WHY ME?!" I want to break stuff, punch things, and go into hysterics for someone to understand what I'm going through. Why can't I have a normal life? Why can't I go out anytime I want? Why do I have to lay around and be miserable?

There are days I have to keep it together when I want to break down. I have to keep it together to go to work. I work in customer service so I have no choice but to put on a happy face. I have to keep moving forward.

On my good Chiari days...well I want to do everything. I want to get out all that couldn't be done on the bad days. But on the other hand I can't over strain myself. That will cause a bad day. I can't over exert myself...again will cause a bad day. Hell...I could sneeze or cough too hard..there goes my day. There is also the lack of energy I have that keeps me from doing a lot. The fatigue I get.
The good days give me inspiration to keep going. It helps me to help others in the same situation. Despite the bad days there will be a good day here and there. The only thing we can do is make the most of it.

For example: Last weekend... St. Patricks Day. All the women in my family on my moms side go down to OCMD for our Girls Weekend same time every year. Friday totally kicked me in the ass. Not only did I not drink any alcohol...(Carded for a DIET COKE....side note there.) and started off fine...had to leave the bar early because Chiari kicked in and said FU you're not having a good time tonight. It was nice out most of the day and a bit rainy at night.
Saturday all day was great..my head was good to me. We all went out to the parade, to the boardwalk, to dinner and then to the Sandbar as usual. By this time my head was still being good to me. Again decided no alcohol...my head was being good I didn't want to chance it. Diet coke and water all night. Successful head day. It was misty and chilly all day. You can't predict it.

Cracking up.. I'm not sure how to take this one...it could mean a lot of different things.
Going crazy? Insane? Oh yeah that happens... The pain, frustration, confusion...all of it will drive you mad. What you need is support. You need other people going through the same thing to vent it all out. I have that. www.chiarisupport.org is a place I found and it is growing!
I also have Joe. He makes me laugh. This is the cracking up in a different sense. He helps me laugh at the weird things I do. Chiari comes with a lot of off the wall symptoms. Walking into walls...yeah my depth perception isn't great at all. Speech is messed up. I slur or repeat words over and over. I don't feel insulted when Joe laughs at it.
There are others that don't understand or won't take the time to understand.

I read. Harry Potter is my addiction. Disney is an obsession. I will get lost in books or animation and forget about the world. Thats my alternative.

But how do you handle living with Chiari, wanting to break down, fall apart and crack up when you can't escape? You do all three. Just make sure you have someone there to pick you back up. Don't fall over the edge. You need to know you are strong! If we couldn't handle it...we wouldn't have been given this life to fight for. There are others out there going through much worse.

You can find more Chiari blogs on this topic at the Chiari Carnival
Don't forget to LIKE Chiari-Life on Facebook! Click the link on the Right or click HERE
Lets get Chiari trending on Twitter! Tweet #Chiari on all your posts!

Rare Disease Day!

Welcome to the first Chiari Carnival celebrating Rare Disease Day.
Introduction:

Hey, I’m Alicia. I blog to share my experiences in order to help others and spread awareness on Chiari Malformation and Syringomyelia. I also have a facebook page based on my blog sharing information as well. MyChiariLife. I am involved with an online support group for Chiarians: Chiarisupport
I have my Associates Degree in Business Management and I am currently the Asst. Guest Service Manager at a hotel in PA.

Chiari is typically a birth defect that goes unnoticed for years or decades. When did you receive your diagnosis and how old were you?

I was 15 years old when I was diagnosed with Chiari Malformation and Syringomyelia. I was diagnosed in 2003.

Many Chiari patients have been diagnosed with other conditions. Do you suffer from any other conditions besides Arnold Chiari Malformation?

Syringomyelia and depression.

Patients who have had decompression surgery are referred to as zipperheads. Are you a zipperhead and have you had any other Chiari related surgery?

Yes, I had decompression surgery in 2003, about 3 months after diagnosis. I haven’t had any other surgeries.

Western medicine focuses on medicine and medical procedures. However, many people benefit from ‘alternative’ therapies. What is your favorite non-medical/non-medicinal treatment for symptom relief?

Ice packs. Freezing the pain. Ice packs are my best friends. One on the base of my head/neck and the other on the forehead.

Since Chiari affects the brain and nervous system some patients report symptoms which are difficult to describe. What is your most bizarre symptom?

Depth perception is way off. I could be walking through a doorway and somehow end up walking into the door frame instead. Although I know I’m seeing myself walking though the doorway…BANG I’m walking into the frame. ALL the time.

Twisted/slurred speech happens a lot. When I get excited or I’m talking fast it happens most. I trip over my words or repeat them over and over until I can make myself stop and start over again.

Dealing with pain and symptoms day after day can be very challenging and many state that their loved ones just don’t understand. What would you like others to know about living with Chiari?


The only thing you can do is “Keep Moving Forward” to quote Walt Disney. You have basically 2 choices…let the disorders overtake you or you can overtake the disorders. If you want to live your life…unfortunately you have to get up and get going on your bad days as well as your good days. It’s a pain…literally but the alternative isn’t much of a life to me.


Attitude is plays a huge role in feeling healthy. What activities do you engage in to keep a positive attitude?

Reading. I’m a book nerd. Harry Potter is my love. Disney. Music. Movies. I’m crafty. Paper-crafting, woodburning, and other artsy fartsy stuff. Act goofy. Hang out with my boyfriend. Joe is my support, he takes me seriously when I'm hurting and helps me make the best of it. Time with my family and my friends.

A great quote can remind us to keep the faith during those dark moments in life. Can you share a quote or saying that provides you with inspiration?

I love Disney so here are some:The very things that hold you down are going to lift you up. –Timothy

Mouse (Dumbo)
Be yourself here, and if people aren't taking you seriously, then they need to change, not you. –McQueen
You're braver than you believe, stronger than you seem, and smarter than you think. –Christopher Robin

On behalf of ChiariCarnival thank you so much for sharing some of your Chiari journey with us.

Sure thing:)

If you're interested in joining our carnival let us know! Click the link above.

Java Monster

So Chiari-Life has a facebook page. Help spread awareness by sharing the link and sharing your story on the page! You can "Like" the Chiari-Life facebook page by clicking "Like" on the right side column or by going to http://www.facebook.com/MyChiariLife
I will try to keep that page updated with Daily Chiari Facts, Stories, Resources, etc.
As I said above, feel free to share your story on the wall, your advice, your questions, thoughts, or anything you'd like (Chiari related obviously)

Now to Reference my Dixie Doodle post...the asap.org newsletter came in and here it is:
ASAP Winter 2011/2012 Issue Check out page 6. (Read the rest of the issue too, some good stuff!)

I have been finding a lot of chiarians on Twitter lately. If you're on twitter, follow me @BearlyBurnt and mention my blog so I know how you found me. Lets get #Chiari trending!
Post this on Twitter:
"Trend #Chiari Malformation Awareness! #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari RT"

I'm out of things to post so good day to you:)

Rockin' the Purple in my car!

(Couldn't think of a title so I went with the drink I'm currently drinking. Loca Moca Java Monster.)

Dixie Doodle

I want to wish everyone a very Merry Christmas! I hope you all have a wonderful holiday spent with family and friends!

I'd like to send out a HUGE thank you to my friend Dixie, Lord Dixies Blog. For Christmas, he made a donation in my name to American Chiari and Syringomyelia Alliance Project for Chiari research.



Buddy and Coco ready for Santa!

I don't have too much to say on Chiari today. Luckily *knocksonwood* I haven't had too many Chiari headaches lately. They have been minimal.

So as I don't have much to say on the matter, I'd like to tell you about our new "son". Joe got a Blue-tongued Skink. His name is Toothless (after the movie How to Train Your Dragon and because he doesn't have any teeth.)


Joe and Toothless

 

Me and Toothless
Of all places...he loves my neck, shoulders, and head.

 I'm not super religious though I am a Christian. As it is Christmas time I saw this and thought this fit well. (Fits for anytime really.)

A Chiari and Syringo Prayer

"I ask the Lord to help me, to guide me thru the day,
I ask the Lord to give me strength, to help me on my way.
I ask the Lord to help me thru, the pain I do endure,
To help me bear my burdens, and keep my weak heart pure.
I do not ask "Why me Lord"? for surely there's a plan,
For me and other's like me, even if we don't understand.
I said "Chiari and Syringo, Lord, have given so much pain,
Have taken so much from me Lord , that I can not regain".
And then a voice within my heart, said, "Look at what you have,
An old life gone forevermore, with so much more to gain".
"For a new life opened to you, Love, Comfort and true Friends".
"All understanding of your pain, and with you to the end".
I really thought about this then, and felt my weak heart grow,
For the Lord has Blessed me greatly, with something so many will never know.
A new life opened up to me, new Family, Friends, and Love,
To share my life completely, sending Prayer's, Comfort, Understanding,
And true Love.
And then I said "Thank You Lord, for all you've given me,
For every pain I suffer Lord, you've sent a friend to me.
For every cross I have to bear, I never bear alone,
Because, friend's help me carry it, however far, or long.
Be with us all, and guide us Lord, as we journey thru this day,
Give us strength to be there for each other, in each and every way".
"Thank You Lord" By: Debi Risher



Notebook/Journal

Have you ever heard of a headache or migraine journal/notebook? Basically its to keep track of when you get them, what you did before and after, what you ate etc. It is to help figure out if there is a common trigger or something in your daily habits that may cause them.

It's been suggested that I keep one. Chiarians especially, I think should keep one. Not only on just the head pain, I think the other symptoms (along with those really odd ones) should be noted.

Here is a Chiari Journal Entry from

September 28th, 2011

"I'm at work. I started getting dizzy, lightheaded, seeing spots when I move my head, and cold sweats. I feel like I could faint. I started feeling like this around 4pm. (I wasn't feeling too great when I got up either but nothing similar to the above) It was about 78 degrees outside and humid. Inside work was hot too. I turned the a/c and fan on. I also grabbed a cold rag and wrapped it around my neck. It's 6:45pm now. I still feel all of the above, only less cold sweats.
The only thing I've eaten today so far was crackers - I don't know that they helped any. I feel like either my blood sugar is super low (I am not diabetic) or my blood pressure is very low (what would make it drop like that, esp when I have good bp). I've had caffeine and sugar.

September 29, 2011

This lasted until around 1-1:30 am about 9.5 hours. Today I had the dizziness and headpain with a fever off and on.

Basically that is the sort of thing to record. What things you're feeling, what you were doing, what you ate etc. I don't know if what went on was Chiari related. It's hard to tell. I'm practically dizzy or lightheaded daily.
But you get the gist. I haven't done this long enough to see if it helps any. It may help with regular headaches.
So as it is the month for Halloween... I think the blog is in need of decoration.

Post-Op Anniversary

No funny stories in this post.
Today is my 8 year post-op anniversary.
8 years ago today I had decompression surgery.
8 years ago today I had brain surgery.
I can't believe it's been that long already.

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 to my somewhat normal self. Quoted from A Real Horror/My Story

I'm not sure how long surgery lasted. I believe it was about 5+ hours.

I'm going to jump around. I should really talk about diagnosis and how its found (other than generalizing and saying MRI) but as its my Surgerversary (like that term? just made it up.) I figure I should talk a bit about the procedure.

I'm going to try and address the following questions: (Answers are based on my personal experience as well as from other sites.)

How do you know if you should have surgery?

What happens exactly during decompression surgery?
Will this cure/fix my Chiari?
How long does it take to recover?

• How do you know if you should have surgery?Your NS will tell you his/her opinions and resoning for surgery. The more complicated your symptoms are, the more likely they are to recommend surgery. There isn't one specific reason to give the automatic yes on surgery. Depending on the severity of the symptoms and the doctor. If you feel your pain is too much and your not getting the right help/treatment...the best bet is to get a second opinion.
• What happens exactly during decompression surgery?The goal of the surgery is to create more space around the cerebellar tonsils and restore the normal flow of CSF.  The procedure involves removing a piece of the skull in the back of the head near the bottom (craniectomy).  Often part of the top one or two vertebra are also removed (laminectomy).  At this point, depending on the individual case and doctor, some doctors will also open the covering of the brain, the dura, and sew a patch in to make it larger (duraplasty).  There are many variations in how the surgery is performed, including (but not limited to) how much bone to remove, whether to open the dura, what type of material to use for a dural patch, whether to shrink or remove the cerebellar tonsils, and whether to replace the missing piece of skull with anything.  Unfortunately, there is no consensus, and no strong evidence, on which technique(s) is the best.  Because of this, it is important for patients to understand specifically what their surgeon will be doing and why.  The procedure itself lasts several hours and most people will spend a night in the ICU and an additional couple of days in the hospital. (Taken from ConquerChiari)
• Will this cure/fix my Chiari?
  This is not a cure. You should no that surgery is a form of treatment for Chiari and not a cure. It is a way to alleviate pressure from the cerebellar tonsils on the skull. It can help relieve you of pain and symptoms. It is not a guarentee that you will be symptom free. (didn't try to rhyme.)
• How long does it take to recover?As with most anything else...everyone is different. Everyone will have different recovery time. Hosptial time may be a few days to a week. After that it could take a few weeks to a few months to fully recover.

A really good site with some info on all of this is Precision Neurosurgery  along with the Conquer Chiari link above!
Well it is time for me to get off for now!
Comment, Share the blog, Help Spread Awareness!
Thanks for reading:)
-Alicia

Oh before I forget...another link: Conquer Chiari PP Presentation: Treatment as the link says...its a powerpoint presentation on treatment. It is in PDF format. Great read and easy to understand!

There you'll be.

I've done it again. Another month has gone by. I don't know how I manage it. There must be some kind of sensor in my head that tells me its been a month that I need to post. I'm not sure why that sensor doesn't tell me to post more often.

Happy Mother's Day to all the Mom's out there!! Especially my mom! I love you!!

Happy Birthday to my muscle man, John! Rest in Peace! I Love you and I miss you so much!!! 05/03/49-05/08/09

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

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!!

-------------------------------------------------------------------------------------------------------- 

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

-----

Another repost:
Living With Chiari

-----

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:)

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

What is Chiari Life?

Chiari Life...

For starters my name is Alicia. I'm 23 years old and this is my life with Chiari Malformation and Syringomyelia. Never heard of them?

Chiari (key-r-e) Malformation (CM) - is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull toward the spinal cord, putting pressure on the brain, skull, and spine and causing many symptoms.

Syringomyelia (sear-IN-go-my-EEL-ya) (SM) - is a chronic disorder involving the spinal cord. The condition occurs when cerebrospinal fluid (normally found outside of the spinal cord and brain) enters the interior of the spinal cord, forming a cavity known as a syrinx. This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx.

More in my next post on symptoms and such.

Info sited from myself as well as:

www.asap.org
www.conquerchiari.org 

UPDATE: 02/18/15
Chiari-Life started as an outlet for me to vent frustrations, thoughts, and well... raise awareness. But really just a place I could type what I was thinking as it came up. Then I started a Facebook page not long after realizing there are a lot of other people who want to get the same frustrations and thoughts out. The same people also have questions and things they want to talk about. We have odd habits and symptoms unique to us. But it turns out with each new story and experience we are able to provide support, education, and awareness for Chiari Malformation.
I do my best to check the validity of the sources on any links I share on any of my pages. I read them and post them if I feel they are worth sharing for support, education, and awareness. Or even just a laugh. If I miss something or it turns out to be false I will look into it. 

I have Chiari Malformation and Syringomyelia and this is my Chiari-Life.

Follow Chiari-Life:
Facebook
Pinterest
Twitter
Tumblr