Sue's fight against Moyamoya

Hi, my name is Karen and I work with Susie Q. Her and her family have gone through a lot in the last 2 months medically and could use our help.

Sue's Story:

As some of you might know, Sue is a fun loving, singing and dancing, beautiful person. She works at Boyne Area Health Center and most patients know her as sunshine. She is always upbeat and smiling to the patients and coworkers. She is very much loved by all who are around her. Recently Sue’s pep in her step was smothered. In June she had a TIA (Mini stroke) at work. When she was brought to the hospital she had left side weakness and speech difficulty. They did a scan of her neck and head and noticed she had what they thought was two torn carotid arteries. She was then medevacked to Grand Rapids for further treatment. After 5 days of testing they found that she had a very rare disorder called MoyaMoya. Her life would change in an instant.  

MoyaMoya means puff of smoke in Japanese and normally happens in children of Asian dissent. So she is rethinking her heritage lol. Anyway, this disease is a blockage in the carotid artery. Normally it gets blocked in the neck but with Moyamoya it blocks in the brain. The brain isn’t getting blood so the little arteries and vessels around the blockage try to take over and it looks like a puff of smoke on the pictures of the brain. Sue is anything but normal though and she actually has this blockage on both sides of the brain. They are 100% blocked and are giving zero blood flow to the brain. After a flow study while in the hospital, they determined that she only is getting blood to the brain from the vertebral arteries which run along your spine into the back of the head. This does not provide enough blood to the brain and in some areas none at all. The neurologists told her she is blessed to be alive as most people at her age with this have a massive stroke or brain hemorrhage and die. They still are shocked she is walking, talking and has no deficit from the stroke. She was placed on blood thinners for the rest of her life and had to change her lifestyle drastically. Her and her family are now waiting for a second opinion at University of Michigan to see about options of a brain surgery called a Bypass to provide more blood flow. After a month of being off work and under house arrest, they allowed her back to work half days. She was finally feeling like she got some bit of normalcy back. After 2 or 3 days back to work the black cloud that seems to be following her, struck again.

On august 10th she was getting ready for work when she had a back spasm that brought her to the floor. She tried multiple times to get up and could not due to the pain. After being flat on her back from 7:30 am to 1:30pm her daughter finally convinced her to call EMS and head back to the hospital. An MRI of her spine was done that night and revealed the next morning that she had what looked to be an infection of the spine called Osteomyelitis.  It is an infection of the bone that had caused swelling and fluid of the disk between her L2 and L3 vertebrae. The swelling and fluid was pressing on the nerves that run down through that part of the spine. She was then transferred again to a hospital in Traverse City where infectious disease could better treat the condition. After doing a spinal tap and blood cultures they confirmed it was a bacteria that finds inflammation in the body and grows there. After a week in ICU they put a PICC line in so her family could do IV antibiotics at home. A PICC is a type of IV that goes in a big vein in the arm and straight to the heart. Her family had to learn how to care for it and provide the medication through it. She has to be given two antibiotics and it is three times a day. She also can only ambulate right now using a walker and someone holding her with a gait belt. Her strength is coming back the more the inflammation in her spine goes down but it takes time. She has to have antibiotics for 6 to 8 weeks and may not see healthy bone for months longer. She has been a spit fire the whole time but is definitely ready to do better in the luck department. The doctors told her to play the lottery as 2 in every 100,000 people a year end up getting Osteomyelitis. The Moyamoya is even rarer than that. Most of the doctors and nurses she met didn’t even know what Moyamoya was and had to look it up.

As you can tell in my rambling, she has faced a lot and like any person does not deserve it. Her husband is on disability himself for various chronic health problems and money is tight. After all the hospital stays, emergency care, testing and traveling they have stretched their income greatly. Sue is very lucky in the fact that this is treatable but still needs a little help on the long road to get there. They also have not yet decided if she needs brain surgery so she has many upcoming appointments still.  Any donation is greatly appreciated and she and her family are forever grateful. We need this ball of sunshine back dancing and singing as she loves to do. Thank you for taking the time to read this and God bless to you all.      

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Organizer and beneficiary

Karen Olsen 
Boyne City, MI
Ken Woodward 
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