Hope for Healing~EDS, chiari, CCI, TCS
MY JOURNEY OF STRENGTH, FAITH &
At the age of 38, I should be at the prime of my life. Unfortunately, as health issues have become more debilitating, most days are spent lying in a recliner watching my life pass me by. Things that I once took for granted such as: working, caring for my children, walking, or just being upright for any length of time, have become daunting tasks. The normal life that I once knew is long gone, only to be replaced by days filled with pain and fatigue, both physically and emotionally.
After 2 yrs. of being blown off by countless Drs., all it took was 800 miles to Maryland, 2 days with the most amazing Neurosurgeon and MANY prayers to finally get answers (and 100% validation for what I have been telling Drs.). I was diagnosed with Ehlers-Danlos Syndrome~Hypermobility (HEDS), a RARE connective tissue disorder that causes weak collagen throughout the body leading to laxity of ligaments, muscles, skin and blood vessels. Joints dislocate without warning, contributing to pain & debilitating symptoms. THERE IS NO CURE!
HEDS can contribute to many other debilitating conditions (I'm one of the UNLUCKY ones that HAVE THEM ALL)
Craniocervical Instability~My head is wobbly on my spine. Being upright can be extremely difficult b/c brain structures and skull bones slide and sag upon upright posture. Due to the weakness of my ligaments, I also have cranial settling, where my skull sinks down onto the odontoid bone of my c-2 vertebrae, causing it to poke into my brainstem. As my skull shifts, my brain and spinal cord are being compressed. Severe neurological and vascular deficits occur as a result.
Chiari (kee-AR-ee) Malformation~ the lower part of my brain is herniating through the opening at the base of my skull and compressing my brainstem. This is causing obstruction of the cerebrospinal fluid (CSF). This results in severe head pressure, neck pain, difficulty swallowing, headaches; changes in vision, breathing pattern, balance, coordination, strength and sensation. THERE IS NO CURE! Surgery is the only treatment to re-establish normal CSF flow and stop the progression of neurological damage. Due to ongoing CSF flow obstruction, I have developed Intracranial Hypertension which can be very dangerous.
Postural Orthostatic Tachycardia Syndrome (POTS)~ Due to the brainstem compression, my central nervous system is malfunctioning when I stand or change head position. It causes my heart to race, severe fatigue and other debilitating symptoms.
Tethered Cord Syndrome (TCS) ~ The lower part of my spinal cord has formed attachments which are limiting the movement of my spinal cord. This causes a downward tugging & stretching of my spinal cord and causes many neurological issues in the lower part of my body. Surgery to "detether" the cord is needed to stop neurological damage.
Instability of c4-5 vertebrae~ My vertebrae are dislocating upon movement, contributing to neurological issues
While the road has been long, my journey has just begun. I have 3 major surgeries ahead of me:
1. Brain Decompression & Craniocervical Fusion (fusing my skull to the c2 vertebrae) ~ JUNE 25
2. Tethered Cord Release - AUGUST
3. Stabilization & fusion of c4-5 ~ TBD
The difficult part is that I have to travel to Maryland from New Hampshire to receive this help. The added distance/travel causes more financial hardship. I also have to give the Dr. a $10,000 deposit before surgery and need the financial resources so that my family can make multiple trips to Maryland. Each surgery will require a lengthy stay in Maryland (food, gas and lodging is expensive). My first surgery will require a 12-15 day stay "“ [YIKES!]
I AM IN A RACE AGAINST TIME! I need to have the pressure removed from my brain with the hopes that the neurological effects can still be reversed. If I don't have the surgeries I could end up paralyzed. JIM, AUBRIE & PEYTON NEED ME! My family has already been hit hard financially due to my inability to work for the past 2 yrs. due to the disabling effects of these conditions & the mountain of medical bills that we have. After 2 yrs. of seeking medical help and being dismissed over and over.....I am convinced that God led me to this Neurosurgeon. It feels IMPOSSIBLE but I cling to FAITH that God WILL make a way! EDS & Chiari may have weakened my body but they have strengthened my spirit!
As a former Counselor, it has always been my passion to help others. It is extremely hard to be on the other side, needing help. It is with a VERY HUMBLE HEART that we ask for your help to make these trips & surgeries possible. ANY help you can give is appreciated MORE than you can ever imagine â™¥ All donations will go directly to travel & medical expenses.
IT WOULD ALSO BE A GREAT HELP IF YOU COULD PASS THIS LINK ON TO ALL OF YOUR CONTACTS
WE THANK YOU WITH ALL OUR HEART
Dianne â™¥ Jim â™¥ Aubrie â™¥ Peyton â™¥
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11 (NIV)
To learn more about these conditions, visit:
Christmas day will mark the 6-mo. anniversary of my brain decompression/craniocervical fusion. It's amazing that in 6 mos. I've had major brain, spinal cord & spine surgery while clinging to the hope that I would be restored. I will admit as I began to regress again in the recent months I started to lose hope. Waking up from surgery feeling as good as I did restored that hope!
The kids and I gave Dr H a gift today ..a frame with pictures of him with the kids and our family with a beautiful poem that I found called "Healing Hands". We added a plaque that said "Forever Grateful....Forever Our Hero" in the card I told him that for nearly 3 yrs I begged God to bring me answers...but never did I imagine that He would lead me to Dr H, who within 6 mos, would help to restore me. He is such a humble man that I'm sure he will never know the depths of what he has done for me and my family. I have truly received the best gift ever (Jim jokes and reminds me I have the most expensive neck ever at a pricetag of $100,000 but that I am worth it).
For those of you that take your health for granted...don't! In a matter of an instant everything can change and your world can turn upside down! Enjoy the simple things in life....live simply & love completely....back to basics! After the year we have had I will forever embrace that. I am forever grateful for the unconditional love & support that Jim & the kids have given me....for all the wonderful "zebras" that I have connected with who started off as just names on patient forums but quickly became friends to share the journey with, and countless blessings along the way. it's amazing when you stop to look for them you actually do find them! I know that despite our struggles this year, we have also been blessed beyond measure. We have spent a good part of this year in Maryland, which will forever be one of our favorite places. We hope that the next time we return it will be for fun...to take part in the Chiari walk and/or attend the EDS conference. Although I've had these amazing surgeries chiari and EDS will always be part of me and will probably rear their ugly heads again...therefore we will continue to fight for funding and rsearch and I will always advocate for others. Jim asked me earlier what it felt like to not have any surgeries scheduled. It's nice. Let's hope it stays that way. I think Dr H has put me back together as much as he can!
As we make our way home on this rainy day...my heart is full. From our family to yours we wish you a very Merry Christmas and pray that 2014 is healthy & happy...and to all my "zebra" friends...as pain-free as possible
We just had dinner at IHOP... eggs and pancakes are soft (and the kids eat free) We are back at hotel. I was just reading a postcard that the surgicenter gave me....I've never received anything like it before...its information to send a thank you note to the family of the donor who graciously donated his/her tissue that was used in my graft. it's amazing how reading the card makes you stop and think about how something good can come out of another family's sadness. I will certainly be sure to send a thank you along with my story so that they know how their loved one's generosity has now blessed me and my family. It warms my heart and makes me go to bed tonight even more thankful. God has been faithful yet again!
Jim and the kids are watching a movie.I just took a muscle relaxer and pain med....definitely time for bed! Thanks again for your prayers!
I am looking forward to a couple days of sleep. Thank you for your thoughts and prayers! Its much appreciated! Before DR H took me to surgery he prayed over me and when done he smiled at me and said "you're covered" He is such an amazing man!
Off to find a milkshake then bed for the night while jim and the kids watch a movie :)
I'm feeling very much at peace...have full faith in God & Dr Henderson today. Looking forward to waking up feeling better. Your prayers are appreciated. I lift up Dr Henderson today that God gives him wisdom and guides his hands to bring complete restoration today. I lift up Jim & the kids that they have peace and know that all is well.
I am so thankful that everything came together to make this day possible.Trusting & believing that "by His stripes I am healed"
I will have Jim update.
Praying for a way to have remediation of cervical medullary symptoms from EDS too, hoping to get to Dr. Henderson....from Pdx, OR. Your story gives me hope. Wishing you all the blessings!