Good Afternoon Chiari Family,

There is a study that I have been doing and that is "Why do we have Pain?" Where are you God when it hurts? 

We can deal with all the other overwhelming information that comes ones way with Chiari, but I want to be able to help and deal with an ongoing topic in your lives and that is Pain!

Many questions searching out answers. Maybe you have some too and this is a forum of complete honesty and no judging at all.  

There is a lot that I am learning and I have  had to to ask do we Americans have an inadequate view of suffering?
(Ask someone from third world country? where medicine is not a option - what do you do then?)

Most Peoples Faith - is in what ever can bee seen or felt. I have seen it build you up or destroy you. Give you peace or continuos depression and anger. 

Definition of Faith - Slippery, intangible, impossible to grasp. Faith is the substance of things hoped for and the evidence of things not seen (you believe that it is in your grasp, you speak it out and claim it as if it has already happened) . We have problem with this because we have to be able to touch, taste, smell it for it to be real. Yet what if, just what if you walked out to the edge and you didn't see the bridge in front of you but you can see your healing on the other side, your peace on the other side that it was just there waiting for you, but all you had to do is just take the first step. You take a deep breath and say ok daddy here I come and just fall forward and all of a sudden you see these hands appear creating a path to get you to the other side. Just saying what if? and what does one have to loose is what I always ponder on....

The one thing that you have grasped and hold onto is "Pain and Chiari" or even those to whom have other eliminates happening in your body, sickness, disease other disabilities.

So this year we are not only going to pray for physical healing, but we are going to renew our minds, do something we have not done before so we can have the results that we have never had before. Power of the mind and the tongue - watch things shift and change in your physical lives as well as the peace and joy you will obtain in the midst of your Hurting and Pain (which is real)

We will chat more, but I also want your real feed back as well. Be blessed - Quote: "If you really want to do something, and you want to see changes you will find a way, if you don't you will find an excuse and no peace"

 
 
Good Morning Family,

The question that we ask today is " who out there in our Chiari Family has had to recreate themselves due to their disability? We understand when have this disability that you are not able to work on a regular basis, because it is a different day each time you awaken and your not sure what your body is dictating to you. 

Ashley and I have been sitting down and pondering what she could do to create an income for herself that solely relies upon her and when her body can show up to work. So we would love to hear everyone's input and how you have taken this challenge? Looking forward to hearing from you all.. Blessings!
Like ·  · Promote · Share

  • Stephanie Davis Breon likes this.


  • Heather Forbes I'm in the same boat....its only been a year and 3 months since my first of 8 surgeries. Doctors won't allow me to work. So I decided to go to school while I wait. Not much for income, but helps get me out of the house some.
    December 28, 2012 at 8:15am via mobile · Unlike · 2


  • Jessica Chiari Lightworks I owned my own home business. This was before I was diagnosed and before I became really sick. I taught myself graphic design and operated belly bean designs for almost 5 years. I designed and printed photo birth announcements, custom photo cards, invitations, holiday cards. Between my illness and the economy I could not keep up. I applied for Ssdi in 2010 and was approved. This was still 2 years before I was diagnosed. Prior to that I worked at home as a project manager tech support manager for a restaurant point of sale software and hardware provider. Again the demands of the job and my declining hearing and health had me change my path. Now I am a stay at home mom. I'm still recovering from decompression but am beginning a new chapter over the next year. I'm not sure where it will take me. I get tired and pain from sitting at the computer, I can't hear well enough anymore to waitress or bartend...so ill see wher my studies take me and probably develop that into another home business.
    December 28, 2012 at 8:32am via mobile · Unlike · 2


  • Marti Babb I got my degree in Animal Science in 97. I was getting married & was working as a Veterinary Nurse when all my Chiari stuff started. Everything fell apart including my marriage. I was a Professional Trained Makeup Artist for a few years but, again Chiari & Fibro took over. Now I can hardly apply my own mascara. It took some time but, I created my own Personal Pet Care Business (my dream job since I was a kid) Having my degree helps a lot because anyone can "say" they are good with animals & start a business. I have a gift with them. In 4 years, I've never missed a day of work because #1 The animals heal me. I feel lil to no pain when I'm with them & I can't wait to see them. #2 I'm the boss I set my schedule & am in control over how much I can or can't handle. #3 Animals are my life purpose~ MY BLISS
    I suggest Ashley follow her bliss. Find a need & fill it. The income will flow when she loves what she does
    December 28, 2012 at 8:49am · Edited · Unlike · 3


  • Jessica Chiari Lightworks Marti Babb - What beautiful advice!!!!! i couldn't agree more! one more thing I want to add - despite illness if your bliss, or passion suddenly begins feeling like work - it may be time to change. Ultimately I know that i'm hardwired for helping or serving people - I anticipate people's needs very well - it's like I can sense and provide these things before they have to ask...that's why I was so good in the restaurant industry. Tech support wasn't a passion, but I loved travelling and training the management and staff how to use the system. I loved being the "unexpected" - the girl in heels and a dress that could still get down and dirty and run cat 5 cables, open up a server and figure out how to fix it. Then with design, my business was all custom at first. My inspiration would come from the photos my clients would send me, and what they pictured I did my best to bring to life. Sometimes I had to squelch that and please my clients even if I knew it clashed because if they felt it was beautiful then I did my job. Once my work became more template based and trendy, it took the joy out of it. The clients that were loyal and kept coming back with new ideas and beautiful photos that were willing to pay more for the time I put into it kept me going. But between a marraige falling apart, learning to single parent 3 kids (one on the Autism spectrum, and one with ADHD), trying to keep us financially afloat - the passion just was gone. Deep down I always wanted to be just a mom and a wife and now I'm able to do that. The hard work I put in before I was sick, refusing to label myself as disabled while losing my hearing, allow me to do just that now. Chiari slows me down, but the most important thing is I'm present. I'm happy, peaceful, full of love and joy - and sometimes very cranky with pain, but it's ok. When my children need me less, I'll have time to find my next passion and I have faith that it will all come to surface when the time is right.
    December 28, 2012 at 9:55am · Unlike · 3


  • Brian Reidling I WAS W0RKING FOR THE CITY AND THEN F0UND 0UT B0UT MY CHIARI AND THEN HAD MY DEC0MPRESSING D0NE 2 WEEKS LATER AFTER I F0UND 0UT AND D0NE G00D F0R A YEAR THEN EVERY THING STARTED C0MING BACK THEN D0CT0RS APP0INTMENTS AFTER 0NE AN0THER THEN PHYSICAL THERERAPY 3 TIMES AWEEK THEN THE CITY T0LD ME THAT I WAS A LIBILITY T0 THEM THEN I T0LD MY D0CT0R AND HE T0LD ME THAT I WASNT G0NNA BE ABLE T0 W0RK ANY M0RE AND HE T0LD ME T0 G0 FILE F0R MY DISABILITY AND S0 I DID. H0W L0NG D0ES IT TAKE T0 BE APPR0VED. I FILED IN 0CT. 0R N0V.
    December 28, 2012 at 11:57am via mobile · Like


  • Chiari Kendra I just do day labor to supplement my income so I can go in on days Im feeling good and not be penalized. Not the most glorifying thing ever but I like the flexibility and not having to call in to work.
    December 28, 2012 at 12:28pm via mobile · Like


  • Kevin Bockelman Not good i have went back to work and the pain dizzyness fatigue. So many more to go through it is hard. Disability and part time? I am about to go back again after this neck fusion. Chiari sucks never goes away just trying to dealwith it. I just dont know about my future
    December 28, 2012 at 12:33pm via mobile · Like


  • Heather Forbes Brian, be prepared to fight for ssdi. I also had to apply, its been a year this Nov. I just got denied and have the appeal process going. I learned from many that they usually deny the first time....just don't give up!!!!!
    December 28, 2012 at 12:36pm via mobile · Like


  • Marti Babb Jessica Chiari Lightworks I can't tell you how many Chiarians feel exactly the same way about their purpose~Bliss. I'm always surprised at how well Chiarians can anticipate the needs of others. No one knows how to be supportive like a Chiarian. I think our intuition is stronger too. I really believe we are all hard wired to be of service with kindness. We all just need to wake up! Being present has been a huge lesson for me. Make a list of what you love & then do it! A few mantra/meditations that help me... I am always taken care of, I am always provided for. I am safe & sound. I've experienced a lot of trauma through out my years. That last one is a challenge
    Nameste'
    December 28, 2012 at 12:39pm · Edited · Unlike · 3


  • Brian Reidling Hey heather thanks f0r the support. my father in law has s0me kind 0f bl00d disorder and he applied for his and it only took him 7 monthes. i hope i aint got to fight with them
    December 28, 2012 at 3:15pm via mobile · Like · 1


  • Chiari Malformation Thank you all for your feed back look forward to hearing more....
    December 29, 2012 at 4:47pm · Like


  • Chiari Malformation Brian, you will get approved, but you will have to go through the denials first, and possibly may have to a get a lawyer to push it through quicker....we are in the process now and are using a lawyer, we will have to see.
    December 29, 2012 at 4:53pm · Like


  • Marti Babb I haven't done the ssdi process even though I've been urged to by many. If & when I do? I will figure out a way to get a ssdi Lawyer 1st. For me, hearing what everyone goes through & the fact that most of my Dr.s are considered alternative...it's far too much energy to waste & FAR too much drama.
    December 29, 2012 at 7:56pm · Edited · Like


  • Heather Forbes I obtained the use of a lawyer from the beginning. I have far too many doctor appts and to many bad days to have to deal with ssdi as well. It has been a huge relief to have one less thing to worry about!!!!
    December 29, 2012 at 5:34pm via mobile · Like


  • Lorri Ball-Baker I was awarded ssd no lawyers though. I don't get much 85 a month, since I've been sick for the last 6 years and couldn't work full time they through out the 15 years I worked full time and some years worked 7 days a week. Sucks but at least I can go see my neurosurgeon after almost three years. Maybe get the cervical surgery I need.
    December 29, 2012 at 5:57pm · Like

 
 
My personal experience:  If you give an explicit request to a doctor and not just a vague unsure plea to do something they 9 times out 10 will not refuse it.  

Another key and point I want everyone to understand.  Your specialist or doctor you work with,  you need to ask them if they themselves can read and accurately interpret both MRI and symptoms that are being experienced.

No not every neurologist; know how to read MRI's and yes you can take that to the bank (our experience 4 MRI's 3 report written incorrectly by Radioligist Doctor) our doctors read this and rolled with it because why? Yhep they didn't know how to read and MRI themselves.  

A neurologist will have to refer you to a Neurosurgeon so my suggestions you may want to start there to save your self some time and heart ache.

You have to be your own best strong advocate or find someone who will be.  Gone are the days of the all knowing family doctor who is familiar with all his patients problems and yes will care enough to spend the time necessary to solve any problem you may have.  So welcome to the 21st century.  Lawyers, insurance reimbursement, the two minute office visit, and endless specialists are what you expect.

So believe in yourself and follow through.

You will have to have a MRI or Cine-MRI (phase-contrast MRI)  You can look these up and it will tell you the difference .  I just didn't want spend too much time on that part of the information.   I know it is not fun and very tight quarters, but it is necessary to have this done to determine whether or not you have Chiari.....take your own music, think of things that make you relaxed.  Ear plugs and Headphones if they let you.  

There will neurological testing as well - multiple testings so they can determine the severity of your symptoms.

If you have a child that is school age - Identifying cognitive and emotional problems is especially important for young school aged children with Chiari.  You will come to understand that know one understands - that is a fact.  So you are going to have to educate them and help them understand.  Do not get frustrated with them, work with them.  Research and understand your rights when it comes to their education.  Find out what the process is to have our child evaluated through the public school system and negotiate a plan of action with the school.  Numerous resources can be found on the web to help you with this.

Will post more later.....if there is any question that you may have please do not hesitate to contact us and ask.  Until we meet again.  Remember It's not who you are deformity and disability that holds you back, its who you think you are not!


 
 
So we have decided to try to make things a little more defined and all of this was taken from the book Conquer Chiari: A Patients Guide to the Chiari Malformation:  Book that you should have and your family should read all proceeds go to research for Chiari.

That being said in there were two things that a patient can do to improve this situation.  First, speak up in you do not understand something.  It is easy to feel rushed during a doctor's appointment, but it is also critically important to understand what is being said.  If a doctor uses a word of phrase you are not familiar with do not be embarrassed, just say, "I don't understand what you are saying, because I am not familiar with the word.  Is there another way for you to explain it?"

The second way to improve the situation is you become your own best advocate and learn some of the most commomly used medical terminology related to Chiari.  Understanding some basic words will go a long way in deciphering the medical speak that can seem so confusing.  The reason the doctor's visits can be so confusing is precisely because of the jargon that is used  While it is reasonable to ask a doctor to communicate without using jargon, it is also useful for patients to come up to speed on the terms they will be hearing over and over in order to improve both their understanding, and their aiblity to effectively communicate with their medical team.

So here are 30 most common medical terms - Listed Alphabetically- associated with Chiari, and their definitions.  Taken as a set, they constitute the minimum that an informed patient should have any awareness and understanding of.  

  1. Brainstem - part of the brain which connects to the spinal cord; controls critical functions such as breathing and swallowing
  2. Central canal - very cent of the spinal cord, so named because it starts as a hollow tube which closes in most people as they age.
  3. Cerebella tonsils - portion of the cerebellum located at the bottom, so named because of their shape.
  4. Cerebellum - part of the brain located at the bottom of the skull, near the opening of the spinal area; imporatant for muscle control, movement and balance.
  5. Cerebrospinal fluid - clear liquid in the brain and spinal cord, acts as a shock absorber.
  6. Cervical - the upper part of the spine, the neck area.
  7. Chiari malformation - condition where the cerebellar tonsils are displaced out of the skull area into the spinal area, causing compression of brain tissue and disruption of CSF flow.
  8. Chirari II - more server form of malformation which involves descent of parts of the brainstem and is usually associated with Spina Bifida.
  9. cine MRI - type of MRI which can measure CSF flow.
  10. Cranio-vertebral junction - the area where the skull and spine meet.
  11. Cranium - the skull.
  12. Crainectomy - surgical technique where part of the skull is removed.
  13. Decompression surgery - general term used for any of several surgical techniques employed to create more space around a Chiari malformation and to relieve compression.
  14. Dura - tough, out covering of the brain and spinal cord.
  15. Duraplasty - surgical technique where the dura is opened and expanded by sewing a patch into it.
  16. Foramen magnum - opening at the base of the skull, through which the brain and spinal cord connect
  17. Graft - material, or tissued, surgically implanted into a body part to replace or repair a defect.
  18. Herniate - to protrude through an opening abnormally.
  19. Hydrocephalus - a condition where there is an unusually large amount of CSF in the brain, resulting in swollen ventricles.
  20. ICP - intracranial pressure; pressure of the CSF inside the skull.
  21. Laminectomy - surgical technique where part of a verebra is removed.
  22. Lumbar - the lower part of the spine.
  23. Magnetic resonance imaging (MRI) - diagnostic devise which uses a strong magnetic filed to create images of the body's internal parts.
  24. Posterior fossa - Depression on the inside of the back of the skull, near the base, where the cerebellum is normally situated.
  25. Syringomyelia (SM)- neurological condition where a fluid filled cyst forms in the spinal cord.
  26.  Syrinx - fluid filled cyst in the spinal cord.
  27. Thoracic - relating to the middle part of the spine, or chest area
  28. Tonsillar herniation - descent of the cerebellar tonsils into the spinal area; often measure in mm
  29. Valsalva maneuver - a straining activity which in Chiari patients often causes an immediate headache.
  30. Vertebra - one of the individual bones of the spinal column.

So get familiarized you will hear these terms a lot through your walk with Chiari.  We will post more information really soon.  In the mean time 



 
 
A chiari malformation, in general, is a defect in which part of the brain pushes into the spinal cord through a hole in the skull. Chiari malformations are divided into four subtypes, depending on anatomy of the malformation and whether the malformation was present at birth (congenital) or developed during growth later in life.

Chiari malformation types I and II are the more common varieties. 

Chiari 1 malformation is less severe than the second type of chiari malformation because the second type is present at birth, while the first type develops slowly while a person is growing. In a chiari 1 malformation, part of the brain pushes through the large hole in the bottom of the skull, called the foramen magnum, that the spinal cord goes through. Thus, the type I chiari malformation may not be noticed until the person is an adolescent or an adult, and in some cases, the malformation is never diagnosed because the person never gets an MRI of the head that can reveal this malformation. 

Chiari malformation types III and IV are both more severe than types I and II and present at birth. Type III involves a large brain herniation through the skull where the cerebellum or brain stem protrudes, and type IV is compounded with other severe neurological defects.

There is some talk about similarity of chiari I malformation symptoms and symptoms of chronic pain diseases, especially fibromyalgia and chronic fatigue syndrome. Chiari 1 malformations in adults, when they actually cause symptoms, can cause many symptoms that overlap with fibromyalgia symptoms. For example, fatigue, insomnia, impaired focus and memory, mood problems, leg cramps, muscle pain and migraine headaches are some of the symptoms that are common to both chiari 1 malformations and fibromyalgia.

Chiari malformations are much more rare than fibromyalgia, especially if you are comparing symptomatic chiari malformations and fibromyalgia. That is, many chiari type I malformations do not cause symptoms at all, so it is rare that a person who presents with fibromyalgia symptoms will actually end up having a previously undiagnosed chiari type 1 malformation. Chiari malformations can easily be diagnosed with an MRI scan of the head or a CT scan. If a chiari 1 malformation is detected, treatment depends on the severity of the brain herniation and the symptoms that are occurring. Some symptomatic treatment, such as prescription of pain killers or use of over-the-counter pain killer medications, may be appropriate. Anti-inflammatory medications can also help relieve symptoms. A person with a chiari 1 malformation may need regular MRI or CT scans to monitor the malformation and make sure that it is not getting worse over time. In some cases, surgery may be necessary to treat a chiari malformation. The goal of chiari malformation surgery is to reduce pressure on the herniated part of the brain.

Chiari 1 malformations are symptomatically similar in some respects to fibromyalgia, but they are distinct conditions. Chiari 1 malformations can also cause some symptoms that are not usually found in fibromyalgia, including peripheral neuropathy, sleep apnea and serious problems with balance and motor control. It would be rare, but possible, for a person to be suffering from both conditions at the same time, but this is a chance occurrence. Anatomical studies of fibromyalgia patients suggest that there is little link between fibromyalgia and degree of brain herniation through the foramen magnum. Thus, chiari malformations are not a cause of fibromyalgia.

References:
http://www.spineuniverse.com/conditions/fibromyalgia/chiari-malformation-fibromyalgia
http://www.mayoclinic.com/health/chiari-malformation/DS00839
http://www.nfra.net/Symchart.htm





 
 
Everyday that went by I wondered
Will I ever be that girl that has confidence and be able to conquer.
Whatever life throws at her, will she rise above and beat it.
I am that girl and throughout my life there has been peaks and many valley's
All around me as well as that voice inside tells me you will make it, you are strong.
That girl didn't believe, because the pain was too much, that girl couldn't see the light at the end of the tunnel
But today I have new eyes, today I am that girl that can see the light at the end.
Today its finally within reach, the pain and misery to cease not holding my breath because I am there. 

By Ashley Harris
 
 
There been have many times where I felt like giving up
Enough was enough!
But I always thought to myself why I hear continuously "I do not know"
where is my "I know" to help me cease this pain I live in that no one can see
Yeah I look normal on the outside, but you can't see the inside
When they saw the inside they couldn't undertand my pain.
Tormented, shunned, secluded, lonely and feeling crazy
So I struggled through dealing with all the bumps a long the way
I kept my head up and told myself that I will be ok
And hopefully one day I shall "Know" what normal feels like again.

Ashley Harris
 
 
Picture
We have to understand that our children have no point of reference of what is normal or not.  And if they have had these symptoms from birth they are made by their own body to believe it is normal and won't say anything or even know to say anything.  So again, we have to become their best advocate and if I can help other parents diagnose their child quicker than mine was and stop the heart ache that come along with it that is exactly what I intend to do.  





Symptoms in infants and young children often include:

·       trouble feeding and swallowing, which may lead to gagging, drooling and vomiting

·       Abnormal breathing (may have slow or noisy breathing that sounds like snoring) - Ashley
                                                  still has this problem.  Even after 2 when they took her adenoids and tonsils out because
                                                  of not being able to breath at night and ear infections.

                                                  Irritability, head banging and nighttime awakening (may all be signs of headache in young  
                                                  infants)


Symptoms in older children commonly include:

  •         headaches - 
  •         spinal curvature - When growing quickly we noticed changes
  •         clumsiness - Was hard to determine because Ashley went from 4 ft nothing to 5 ft 10" in the matter of 2 years
  •                             she experienced joint pain, wouldn't eat stomach hurt, no appetite, couldn't walk without falling  
  •                             vertigo when getting up to quickly.  We can now see all of these indications.
  •         difficulty controlling bladder function, in rare cases

When you are reading all of these symptoms this is just a guide to the "What If let's rule it out" statement.  If it become consistant ask your doctor about Chiari Malformation.  What it will require is an MRI of the head and neck just for a new moments of the child sitting still can rule out years or torment and feeling of insanity because you do not know what is wrong with you and no one can tell you.  


Please comment and ask any questions you may have.  Hope this guide helps you.  God Bless