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My Story

What we thought were simply childhood dislocations, growth spurts, and hormonal migraines turned out to be so much more.

Disability, inability to drive, unable to stay home alone for any length of time, use of a wheelchair at times, the need for a service dog, and now the possibility of a brain surgery or 2. A little less than 3 years ago, our world began to take a roller coaster ride, with Shea in the front seat. Little did we know that what we thought were occassional dislocations years ago would turn out to be a rare connective tissue disorder that affects 1 in 5,000 people. It's called Ehlers Danlos Syndrome. (EDS) After a constant decline in Shea's health as well as the lack of local physician's knowledge of EDS we called Dr. Clare Francomano in Baltimore, Maryland. She is a geneticist and an expert in EDS. She has done years of research on EDS. This 3 hour appointment was very informative and educational for both Shea and I. First of all she said that Shea had Classical EDS not just hypermobile as we had first been told. Then she went on to explain that she believes ALL Shea's health issues;(seizures, blurry vision, numbness and wealness in hands, legs and feet, severe back of the head pain, neck and back pan, gagging reflex. her body's inability to control it's temperature, lack of grip strength in her hands, migraines, loss of memory, inability to think clearly plus all her stomach issues) can be contributed to the fact that she has Cranial Cervical Instability (CCI), along with the possibility of her having something called Chiari. The CCI was verified as she gets some mild relief once her head is lifted up off her spine. It is made worse by pushing down on top of her head. The doctor's plan: for us to get Shea to The Chiari Institute(TCI) in Great Neck, NY for further eval. To get an Aspen collar for her to wear as well as a Pronex traction unit for her to use. The traction and Aspen collar do help with her back and neck pain and gives her some relief from the pain in the back of her head. These are other 'sure' signs of CCI. I have CCI, EDS, Chiari, None-Epileptic Sezures, Arthritis, POTS, Congenital spinal Fusion, Degenerative disks, Osteoporosis, IBS, Asthma, TMD, and Gastroparsis. I have had 21 surgerys in all (1989-2008) You may 'wish' there was something you can do. There is, you can pray for Shea and our family as well as the doctors that will be seeing her and working with her. We covet your prayers, Thank you, Shea



Shunt Revision

Mar 10, 2014 7:43pm

Praise The Lord, Shea's revision went off without any complications!!! And, the NS only had to replace the shunt and not the whole tubing. Which would of involved opening up her stomach.

The NS said that the shunt was clogged as well as the tubing, it had what he called 'sludge' in it,  at first the tube wouldn't drain, so he had to clear it using a special tool, but it worked so he left it. He said she had a full head of fluid, that badly needed to drain. So it has now drained and he left the pressure opening set at 100. All this before 10:00AM.

It was after 3:30 before she got to a room, because they had to wait until they had a room on the floor available. 

Then, it was, 7:00pm .......and 2 charge nurses later, before she got pain meds. But, everything got sorted out & Lord willing we will have a good night. 

Thank you you all for your ever continuing prayers on Shea's behalf.

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Shea and Cindy


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