The Cold Got Me!

I have been trying to fight it since my last post...  As of last week it hit me full force.  I had to breakdown and see my doctor.  He never said what it was that I had, but once we left the pharmacy we were broke.  He ordered antibiotics, a nasal spray, and an inhaler.  I went through 3 boxes of tissues, within the last 2 weeks. 

Having this stupid cold, has sent my Chiari symptoms in a tissy.  With the sinus pressure, coughing, and sneezing... I was waiting for my head to fall off at any moment.  Normally when your sick, you want to sleep.  The entire time I was sick, I maybe had 2-3 hours of sleep per day.  Last night I had 1 1/2 hours.  Have any of you had any of these problems,  or others, when sick?

Have a wonderful and pain free day!

How Are You?

I know it has been a couple of weeks since my last post.  Our Internet has been out of service since then. 

I hope everyone had a wonderful Thanksgiving, I know I did.  I was lucky enough to be able  to spend the day with family, and friends.  We all ate more than our pants wanted us too.  Then we played Apples to Apples, even with my 96 year old grandma.  I'm not sure if she really understood the game, but she was good at it! 

With the weather changing, it has been challenging not to get sick.  I have been trying not to get sick, but I'm not sure it's working.  I just hope the flu/cold, goes away as fast as it showed up!  Good luck to everyone trying to fight off the flu/cold.

I hope everyone has a wonderful and pain free day!

How Does Traveling Affect You?

I have had to travel more since I've been diagnosed with Chiari, than most of my adult life.  Whether it's driving 5 hours to the Cleveland Clinic, or 11 hours to the Mayo Clinic (all only one way).  With these long distances, it seems as though I can feel EVERY bump, shake, and twitch in the road, as well as our vehicle.  I just couldn't take it anymore...  I took it as far as dropping our vehicle off at the shop, and demanding them to check our shocks.  They called me a few hours later to tell me, that "there is nothing wrong with the shocks".  So I have come to the conclusion, "It's just me".  How does traveling affect how you feel? 

Have a wonderful and pain free night!

Headaches?

One of the main reported issues is having a horrible headache, that lasts for what seems like forever.  Nothing you do, or try makes it go away. 

If you were to show up at my house today, it would remind you of a Vampire movie.  Every window was blocked from any light, doors were shut tight, blinds were pulled, and all of the lights were off as well.  Even though, I have had the same migraine everyday, for almost 2 years.  Today, it was different...  as soon as I woke up, it felt as if I were ran over by a dump truck, going forwards and backwards.  This makes it hard to do anything with my eyes open or close.  So I ask you, How horrible of a headache have you had?

Hope you have a wonderful and pain free night!

Sleeping...

How well do you sleep at night?  I have been asking myself this same question for years.  I know it's late, but I'm not tired.  I can go to bed around 4:00 a.m., then be up by 5:30 a.m.  Most of the time, I don't feel the need to go back to bed.  Through the day, I feel tired.  I know if I take a nap, there is no chance I will be going to bed a decent time.

Then on the other hand, some weeks I go to bed at 2:00 a.m. and I don't get up until at least 1:00 p.m. or much much later.  So I ask you, How well do u sleep?

Have a wonderful and pain free day!

What Makes You Feel Awful?

I was still in pain yesterday morning through the after noon.  Then last night, I experienced an awful symptom that I don't really want to go into much detail with.  I'm not sure if it's the weather change, or stress but it seems the pain is getting worse, and the symptoms are getting more strange.  

I apologize for not posting something each day.  It has been getting harder to focus anymore...  So my question to you is, What makes you feel awful?

I hope you have a wonderful and pain free night!

Are You Allowed To Drive?

Every time I turn my head, my vision fades away.  Then at any given moment both of my feet will go numb.  I had a bad experience, it could have been worse...  It was a colder day, I got in the truck.  All of the windows were clear.  So I started to back up.  That's when my vision decided to leave for a while.  I didn't remember our driveway being that long...  Then all of a sudden the back end of our truck felt like it fell in a hole.  Then my vision started to come back, that's when I noticed our mailbox was right outside my back window.  All of a sudden I realized, the back end of my truck was in the ditch. That was the day my doctor told me, "No More Driving"...    Now I ask you, Are you still allowed to drive?

How To Pick A Doctor

I found a list of doctors, that can be used as a starting point for your search, at www.pressenter.com.  These doctors have been picked by either their patients, or peers.  This list shows most 50 states, except Montana, Nebraska, Maine, and Connecticut. At the bottom of the same list, it has a spot for the U.S. Military.  You can find a list for doctors located outside the United States as well.  Whenever it comes to picking a doctor, Please do extensive research before letting them to surgery.

Have a wonderful and pain free night! 

Happy Halloween

As you help the little loved ones dress up as ghouls, goblins, witches, and head out to their favorite trick or treating places, it gives you a sense of joy.  On the other hand, if you are the one passing out candy, or goodies to those cute little monsters who are ringing your door bell, hoping you will be taken back by their scary, outfits...  It always gives me a felling of really being needed. 

We took our kids to the neighborhood where my husband went as a child.  As we drove them around, he would tell me which houses would give out the best treats, or the ones that would dress up as witches, and goblins to pass out candy. 

This just makes me think...  How do each one of our decisions, effect someone else?  Whether you chose to pass out candy, or took your little goblins out to collect candy...  No matter what decisions you make, someone will be effected.

As this Spooky night comes to a close, I hope everyone had a Safe and Wonderful Halloween!

Sleep well, and have a pain free night!

Can Chiari be Hereditary?

While there is significant evidence that at least some Chiari cases have a genetic component, it is not known what percent are likely to be genetic, what the chances are of the child of a Chiari parent having Chiari, or what gene or genes may be involved. (conquerchiari.org).


As of right now, I am not aware of any of my family members having Chiari.  However, my mom and I sat down and added up all of our family members that suffer from migraines, and that number is terrifying...  There are 21 members, just on my mom's side. 


I know Chiari can cause brain aneurysiums. My Brother passed away from a brain aneurysium when he was 20 years old.  Then come to find out my Great Uncle passed away from a brain aneurysium at the age of 25.  Non of us are sure if any of these are connected to Chiari or not.  I guess time will tell...

Hope you have a wonderful and pain free evening

Diagnosis

The evaluation of patients begins with a detailed clinical questionnaire. A team of nurse practitioners supervises the data entry, scheduling of tests and physician consultations, travel arrangements and housing. The workup is exhaustive but usually completed over a two-day period.
Outpatient activities are conducted with a multidisciplinary approach. The detailed diagnostic workup includes six MRIs, C MRIs, dynamic X-rays, 3D CTs, high-definition imaging and morphometrics. These are followed by a screening evaluation by a nurse practitioner with clinical screens for Ehlers-Danlos Syndrome and tethered cord syndrome. Next comes a neurology visit. The diagnostic process culminates with a neurosurgical visit. The final product is a report of at least 11 pages.
The goals of the diagnostic workup are to:

• Establish the correct diagnosis.
• Educate the patient and answer their questions.
• Provide a list of management options.
• Discuss the preferred operative technique if surgery is required.

The development of a multidisciplinary approach to address the medical and surgical needs of patients combined with an active research program has elevated the Chiari Institute to the highest level of international recognition.(Chiariinstitute.com)

There are other clinics and institues that specialize in Chiari treatment.  I will touch on those later...

Have a wonderful and pain free night!

Migraines

A migraine headache can cause intense throbbing or pulsing in one area of the head and is commonly accompanied by nausea, vomiting, and extreme sensitivity to light and sound. Migraine attacks can cause significant pain for hours to days and be so severe that all you can think about is finding a dark, quiet place to lie down. (Mayoclinic.com)

I have had the same migraine since Jan. 2010.  When they first started, I had a pair of the darkest sunglasses I could find.  I would wear them everywhere, at all hours of the day!  I had them on the side of my bed just waiting for me to wake up.  Then I had lots of different ladies wanting to take me to a battered women's shelter.  They all thought my husband beat me.  I felt too bad for my husband.  So after a few months I gave up the sunglasses.

Have a wonderful and pain free night!

Your NOT Crazy, Just MISDIAGNOSED!!

Patients with Chiari I malformations often develop symptoms during their teen or early adult years. Less often, the disorder is seen in young children and older adults. In some cases, trauma triggers the onset of symptoms.

The symptoms are complex, progressing over time. Because of this complexity, the condition is often misdiagnosed. At times, Chiari I malformation is mistaken for fibromyalgia, migraine headaches, sinus disease, multiple sclerosis, and other complex disorders of the nervous system. Some patients have waited for years before an accurate diagnosis is made. Accurate diagnosis and plan of treatment is important before the patient’s nervous system suffers permanent injury. (Mayfieldclinic.com)

Have a Wonderful and pain free night!

Pain Management

With many symptoms it is hard to find one method of pain management.  Many people with Chiari suffer through each day.  Some medications can be worse for your body, and health than the symptoms themselves.  Before any of my major symptoms I would take Advil occasionally, then at one point I was on over 24 medications per day.  Which non of them worked... 

In the last 2 years the only pain management I have been able to use, is being around my loving family and friends.  So I ask you, "What has worked for your pain?"

Have a wonderful and pain free night!

Extended List of Symptoms...

I will share one of my crazy symptoms with all of you.  I poured a glass of an orange tropical drink.  As I was getting ready to take a drink, my entire left arm down to my hand jumped.  Before I knew it I was covered from head to toe, in this wonderful orange tropical drink.  While I was sitting there in shock, I noticed there wasn't one drop left in my glass.  Then I realized non of it made it into my mouth either.  This was the only time so far that my arm has ever jumped like that.  It happened without warning, so I am so affraid of holding anything of value.


Since Chiari puts pressure on different neves, it can cause your body to do, and/or act in crazy ways.  When it comes to symptoms not everyone shows the same ones.  Sometimes you can have only one.  Then there are others, like myself that show numerous symptoms. 

A few months ago, I was informed of two cases... One person had half of thier face go numb, and sag as if they had bells palsy.  The next one had thier tongue twisted to the side.  As you may notice with both of these cases, their symptoms aren't ones you would find anywhere, in relation to having a Chiari.

I know I posted the other day a list of symptoms, now I have found an extended list... (Some of these my be a repeat from before)

• Headache (esp. if daily or at lower back of head)
• Painful tension in neck
• Fatigue
• Migraines
• Dizziness
• Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
• Tingling / numbness in the extremeties
• General imbalance / clumsiness
• Memory loss
• Restricted movement
• Intolerance to bright light / difficulty adjusting to light change
• Vertigo from position change or sudden standing
• Difficulty walking on uneven ground / feeling ground under feet
• Poor / degraded motor skills
• Difficulty driving
• Difficulty negotiating steps
• Pressure / pain in the neck
• Pressure / pain behind the eyes (soreness in the eyeballs)
• Back pain
• Neck spasms
• Insomnia
• Ringing in ears (like the tone heard in a hearing test)
• Swaying
• Pain when changing position
• Tingling / crawling feeling on scalp
• Intolerance to loud / confusing sounds
• Decreased sensation to touch in extremeties
• Decreased sensitivity to temperature
• Pain & tension along ear / eye / jawline
• Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
• Drooling
• Spontaneous vertigo
• Hand tremors
• Poor blood circulation / cold hands & feet
• Sinus / mucous problems
• Sleep apnea
• Decreased muscle tone
• Pressure in ears / ears feel stopped up
• Nausea
• Difficulty reading / focusing on text
• Depth perception problems
• Burning sensation in extremeties / shoulder blades
• Menstrual problems / severe cramping during period
• Fluid-like sound in ears (like water running)
• Loss of sexual interest / lack of sensation in pelvic area
• Pulling sensation while sitting / standing
• Intense itchiness w/profuse sweating
• Slurred speech
• Gag reflex problems / lack of gag reflex
• Pressure / tightness in chest
• Loss of bladder control
• Frequent urination
• Dehydration / excessive thirst
• Electric like burning sensations
• Unequal pupil size
• Loss of taste
• Popping / cracking sounds in neck or upper back when stretching
• Dizziness
• Loss of smell / problems with sense of smell
• Dry skin and lips
• Sudden / abrupt changes in blood pressure due to awkward position of head
• Hiccups associated with drinking carbonated beverages
• Skin problems

Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints. (Chiarione.org)

I find it very interesting to learn of symptoms others are experiencing.  What symptoms have you experienced?  Anyone and Everyone are welcome to comment...  I know my husband notices things that I don't. 

I hope you have a wonderful and pain free night!

Looking Back...

I thought my symptoms started in Jan. 2010.  Looking Back, I noticed that I have been living with mild symptoms all my life, from migraines, to not being able to walk down an aisle at the store that had weed, and bug killer without having my throat close. 

Through my life I have been called a "hyprocondriac." Then my doctors would tell me, "I can keep running tests, but just so you know I won't find anything wrong with you.  It's all in your head."  Little did he know, "It was all in my head... " :).  If you know there is something wrong with you, but your just not sure what it is...  Don't feel bad, being persistent.  Make it clear, you won't stop until they run all the necessary tests. 

My main reason for this blog is to help others. 
Have a wonderful and pain free day.

What is Chiari Malformation?

Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses, (Mayo Clinic.com).

Some of the symptoms you could experience with having Chiari are:

• Neck pain (running down the shoulders at times)
• Unsteady gait (problems with balance)
• Poor hand coordination (fine motor skills)
• Numbness and tingling of the hands and feet
• Dizziness
• Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
• Vision problems (blurred or double vision)
• Slurred speech

Less often, people with Chiari malformation may experience:

• Ringing or buzzing in the ears (tinnitus)
• Poor bladder control
• Chest pain, in a band-like pattern around the chest
• Curvature of the spine (scoliosis) related to spinal cord impairment
• Abnormal breathing — specifically, sleep apnea, characterized by periods of breathing cessation during sleep

Did you know there are different levels of Chiari, called Types?

• Type I (adult)
• Type II (pediatric)
• Type III
• Type IV

 I found this information at (Mayo Clinic.com).
I hope this helps at least a little bit...

Have a wonderful, and pain free day!

Another Early Morning...

Does anyone else have issues with sleeping?  Most of the time I have to force myself to go to bed, then I'm up within a few hours.  Wouldn't it be great if we could wave our magic wands and make sure we get a very restful, and pain free night sleep...  that would be wonderful!!

Have a wonderful, and pain free day!

Goodmorning!

I hope you wake up pain free, and ready to start a new day.  Hopefully it will be a beautiful October morning, not too cold, or too hot...  just perfect.  I know it takes most of us a lot of effort, and will-power just to get out of bed each day.  Especially when the pain wants to overwhelm you, and take over your life. 

I know just how you feel.  I started showing symptoms in January of 2010.  At first it was just being nauseous, and having a horrible migraine that NEVER went away.  It seems each month a new symptom shows it's ugly head.  About a month ago I started writing down my symptoms, and I think I reached 35.  My symptoms range anywhere from vision and hearing loss, numbness in arms, legs, hands, feet, vomiting, hand cramped closed for months at a time... and that's just to name a few.  So I ask you, what symptoms have you experienced?

Have a wonderful, and pain free day!

Welcome To My Chiari Awareness Blog

I want to welcome you to my blog. I will be posting about my daily life and obsticles while living with Chiari Malformation. My goal is to help others with this rare condition know, they are not alone.