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Chiari Malformation: You're "Amber's Hope" To Feel 'Human'

Updated on September 8, 2015
Incision from surgery 2008
Incision from surgery 2008 | Source

A Dear Friend

Several years ago, a very, dear friend of mine was diagnosed with Chiari Malformation, also known as Arnold Chiari Malformation. This is a defect in the area of the back of the head, where the brain and spinal cord attach. In layman’s terms, Chiari Malformation is a condition, in which the brain prolapsed beyond the base of the skull.

In a large number of cases, it goes undetected until adolescent or adult years of life. Amber was one of those cases. Her condition was undiagnosed for years. She suffered from heart problems, severe headaches, chronic pain, fatigue and so much more. However, it was years before she was diagnosed properly. Amber struggles daily with her condition.

Who is Amber Bailey?

Amber Bailey is a fun-loving mother of a fourteen year old son. She has a smile for anyone and everyone. Amber doesn’t know a stranger, and would give you the shirt off her back, if you needed it. She can make you laugh, even when you’re having the worst day of your life. She will cry with you, or just hold your hand for comfort. In my eyes, she is truly a courageous and inspirational person. Amber has never lost her charisma, or her faith in God.

This is Amber...........

oooO,,,,,,,,,,,,,,,,, Many People Will Walk
,,,(,,,,),,,,,Oooo,,,,, In & Out Of Your Life,
,,,,\,,(,,,,,,,(,,,,),,,,, But Only True Friends,
,,,,,\_),,,,,,,),,/,,,,,, Will Leave Footprints In Your Heart
,,,,,,,,,,,,,,,(_/,,,,,,,, & Memories That Will Last Forever..

And this is Amber..............

She can deal with stress and carry heavy burdens. She smiles when she feels like screaming, and she sings when she feels like crying. She cries when she is happy and laughs when she's afraid. Her love is unconditional. There's only one thing wrong with her. She forgets what she is worth!

Amber's Journey

In February of 2008, Amber underwent brain surgery. The doctors performed a brain decompression. Even after undergoing this major surgery, she continued with strange, bizarre symptoms. She traveled to numerous doctors over several states trying to find out the cause of these symptoms. Each would give their own diagnosis and treatments, and each of them continued to fail. Amber continued to suffer swollen joints, joints dislocations, debilitating migraines daily, dizziness, temporary paralysis in her legs, episodes of tachycardia of the heart, non-epileptic seizure activity, and periods of disoriented behavior. One common agreement among all of the doctors, it was neurological. However, none could locate it’s source, and all refused to acknowledge Chiari as the problem.

In 2009, Amber was admitted for a cerebral spinal fluid leak, from the two-year old incision in the back of her head. The hunt was on once again to find a doctor who would listen.The search ended with Dr. Fraser Henderson in Bethesda, Maryland. Dr. Henderson is one of the top neurosurgeons in the United States. Amber was able to get an appointment with the referral of friend who happened to be one of his patients. Dr. Henderson diagnosed Amber with Chiari, Ehlers Danlos, and Intracranial Hypertension. He then ordered further tests, because he believes she may have a syrinx in her spine with a tethered cord. He explained her conditions are treatable. She will never be normal, but he would like to help her feel “human”.

Just A Few of the Great Items

Amber's Hope Jewelry
Amber's Hope Jewelry | Source
Amber's Hope Jewelry
Amber's Hope Jewelry | Source
Amber's Hope Jewelry
Amber's Hope Jewelry | Source

Here's How You Can Help!

Friends and family are working together to get Amber back to feeling "human". They have created a fundraising page on Facebook called Amber's Hope. The mission is get Amber back to Bethesda, MD for further testing, treatments, and her surgery. Most of the items are donated to Amber's Hope from several of her "crafty" friends, as well as Amber herself. The FB page is complete with pictures and links of the items for sale. One of the links is for See Shel's Treasures owned and operated by Michelle Clutter Randolph. She has created a collection of jewelry especially for Amber and designated it as Amber's Hope.

Please join us in helping Amber. Thank you and God Bless


Submit a Comment

  • OKSara1982 profile image

    OKSara1982 6 years ago from California

    I sent her a message too :) Thanks again. This is the first time I've spoke to anyone that knew what I was even talking about. It's nice.

  • proudmamma profile image

    proudmamma 6 years ago

    I also sent her a message.

  • OKSara1982 profile image

    OKSara1982 6 years ago from California

    Ha I figured it out :)

  • OKSara1982 profile image

    OKSara1982 6 years ago from California

    I dont know how to find her. I just start hub and learning how to use it

  • proudmamma profile image

    proudmamma 6 years ago

    OkSara1982, I'm so sorry for all the pain you've endured. Amber recently visited another neurosurgeon in Bethesda, Maryland. She discovered she has more than just the Chiari going on. She could really give you some insightful information. Keep the faith...stay strong and God Bless!

  • OKSara1982 profile image

    OKSara1982 6 years ago from California

    I had surgery for Chiari l malformation on Aug 23 2007, I was 24 when it hit me HARD. I had just started Vet Tech school and I'd get these pressure head ache that went with my heart beat. They would hurt so bad, if I was standing I was just drop down to my butt cuz I didn't know if I was gonna pass out or have a seizure, I didn't know. It didn't start out like this tho. I do get bad migraines, the first time I had a migraine I was in 1st grade. The Chiari head aches where different and they started coming everyday and at first they didn't hurt nearly has bad, at first. At this time, I'm 24 yrs old, been married 7 years and have a 2 yrs old boy and 2 girls 4 and 6 yrs old and going to school. I started to realize something wasn't normal in Oct of 06 and it was only cuz of the pressure I would get when I would, laugh, raise my voice, be walking one way and turn around to go back, picking my kids, bending over, going to the bathroom, try to sing alone to the radio, look in the back seat of my car cuz the kids, coughing, rolling over in bed, relations with my husband, getting in and out of my car, I mean any time I used my stomach. That was my home life. I wont even get started on Vet Tech school n working with animals and the pain. The pain from the pressure got worse and worse everyday. I do not know how many hospital I went too and doctors I seen. They would just tell me I was having a migraine and I would tell them this is not a migraine, I've been getting those since I was in 1st grade! N that's all I ever heard. The Doctors would just give me a shot n something to help me not to throw up, which would HURT so bad I would tell whoever I was with "I need to throw up will you go in there with me so I can just touch your leg or something so that way I know I'm still here, the pressure was SO bad I didn't know if my head was gonna pop or pass out" It got to the point that I wasn't getting anywhere with any of these doctor, not even a mri nothing and I have insurance. So I kept going to school. I even thought, that maybe I am crazy and I'm really not in THAT much pain. So I stopped going to the doctor. Everyone knew something was wrong with me and had been for a while. My school was an hour away from my house, so my friend and I car pool but it got to the point that I couldn't drive and any time I went to the rest room, I'd tell her "hey I'm gonna go to the rest room, if im not back in 10 mins then come look for me. I felt like something was gonna happen due to the pressure. On our way home from school, Tina told me she was droping me off at my moms work. My mom is a nurse and the town I'm from only has 6,000 people, so there isn't a hospital, just an old folks home with a clinic open to public. So there was this old doctor that only worked 2 weeks a month there and would go back home to the bay area. He was finally the doc that ordered a MRI and finally gave me medicine to help with pain and sleep and my stomach feeling upset, my knees would hurt and get stiff, my hands and arms go numb, can't swalllow all the time, forgetful, feelings lost n not know where I was for a few seconds. Dr. Bramen was the doctor, he called as soon as he got the MRI back and told me it could poss be Chiari l malformation and he didn't know too much about it. So I looked it up and I couldn't believe it, this was June of 07. Dr. B was able to give me other medication to help but looking back, they did nothing for the pain, just made me a zombie and in bed, couldn't even give my babies a kiss goodnight or tuck them into bed, cuz the pain was so bad I would just drop to the floor. I figured if I'm gonna pass out or something at least I'm already half way there. Finally I was able to get into stanford university hospital. They gave me a CAT scan and added n removed meds I was taken. They told me I had an appt to now go see the neurosurgeon but not for over a month away :( so back home I went and Aug 3 finally came. I met the doc and he said the only way to help with all the pain was surgery and that it was on 80% rate and ill never be 100% or it wouldn't help at all or it will relieve some pain and that the pain could always come back. After my 6 1/2 hour surgery, that was suppose to be 3 hours, he said that there was more hanging out, then what they thought so they did the best they could Recovering for surgery in my eyes didn't hurt as bad as what I was gong thur. I still get my pressure head ache not as bad like they were but, yes I'm in my, my neck and shoulder hurt, I get trobbing where my neck and head meet, my knees still hurt and I don't sleep well at all. Hints why I haven't slept. Ive lost so much wright. I know go to a Neuro Pain management doc, Dr, B ended up retiring, so I found a new doc and he sent me there. I still take pills everyday, they all do diff things and I don't think there is much of a diff. Ive had a mri and I was told you can see part of the Chiari. My pain management Doc just started giving me injections in my neck this last thurs cuz my neck muscle and really tight and hurt. I hurt everyday and if I do to much I will pay for it, either that night or the next few days. I have my bad days n bad weeks where I get the pressure really bad. I hate not be able to be me. My Neuro pain doc has told me the same things as Amber, that this is a life long thing and he can only try to get me feel some what human again but he can't make promise!

  • proudmamma profile image

    proudmamma 6 years ago

    Thank you MellyMoo for checking out Amber's Hope. She's had a few issues this past week....but she's set up some of her appointments for the rest of the process. Thank you for the read and the comment. God Bless

  • MellyMoo profile image

    MellyMoo 6 years ago from Australia

    I have liked the page on facebook and sincerely hope that Amber gets where she needs to go real soon and gets the help she needs. I have a friend who also had this brain surgery (successfully). All the best, M


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