Connie MacGill Connie's Health Journey

First post: Feb 20, 2017 Latest post: Mar 18, 2023
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Mom's health problems seem to begin in April of 2016 after cataract surgery.  She said she felt a "fluttering" feeling in her eyes, but no doctor could see anything wrong with her eyes.  She was eventually referred to a neuro ophthalmologist who ordered an MRI.  The MRI showed that she had had a mini-stroke in the left occipital part of her brain sometime in the last 6 months.  This could possibly explain the feelings in her eyes because that part of her brain is related to sight.  Meanwhile, she had also been starting to have some weakness/numbness feeling in her right leg but the neurologist did not see a cause for that and wanted to "watch it".  Throughout the summer she also had a couple bouts with vertigo that was treated with medication and crystal manipulation.
In August 2016, while walking with a friend, she began to walk strangely.  Her friend noticed that mom was walking with her upper body leaning to the left and and back.  I drove to pick them up because she couldn't make it back to her car.  The next day we were back at the neurologist.  Another MRI was scheduled and we were then told she had hydrocephalus (fluid on her brain).  Her walking and balance quickly became worse, as well as short term memory and confusion.   She was forced to use a walker all the time and of course no longer was able to drive.  This was devastating to her, losing her independence. 
She was referred to a neurosurgeon who scheduled a "lumbar drain trial" to see if she could tolerate a brain shunt that would remove extra fluid off her brain.  This took place October 3, 2016.  This was to be a 3 day test to remove some spinal fluid from her spine, and see if there was any improvement in her symptoms.  Unfortunately, after 2 days they had to stop test because she was having really bad low pressure headaches.  She was then told she would not be a candidate for a permanent shunt.
Over the next week, while she recovered from the bad headaches, we realized her balance and walking improved!
Her sister Suzy contacted Johns Hopkins Hospital in MD because they had a  special hydrocephalus program.  After submitting all of mom's medical records to them, they wouldn't see her because they believed everything was done correctly here in Raleigh.  Needless to say, we were all very disappointed.  
She had another mini-stroke right before her birthday on October 17, 2016.  In the same location as the last.  This time she was put on a blood thinner.  The only symptom she had was that her "lips were burning".  Again, we were told by doctors that a stroke in this location would only affect vision, not major muscle movements like walking.
A friend of mine at church surprisingly was diagnosed with hydrocephalus not too long before all of this.  His surgeon put a shunt in him and he improved greatly, so I pursued trying to get my mom seen by this doctor.  I called, and then delivered them all of mom's medical records.  This doctor agreed to see her, but the earliest appointment was January 17th.
With her symptoms getting worse, we were forced to start looking for other living options since she could no longer live by herself.  She was falling a lot because she was forgetting to use her walker, and she was getting more confused.  Our family tried to take care of her, but it became a 24/7 job and we needed help.   We hired home healthcare nurse aides for the first week of January 2017 while I finalized plans for her to move into Sunrise of Cary assisted living.  She moved in there the second week of January.
We had really given up hope at this point that hydrocephalus was what was causing her problems.  And at this point, she was in a wheelchair full time because of weakness and continued falls.  Doctors were telling her that they believed all this was caused by the strokes and possible dementia beginning.  I almost thought, "we should just cancel this appointment on the 17th with the new doctor".  I assumed he'd just tell us the same thing.  We were so surprised and hopeful when we went and he told us "I feel confident a shunt will help her". 
Our prayers were answered when she was able to get to the surgery date of February 15th without another bad fall or additional stroke (being that she had to be off blood thinner for a month).
She had surgery February 15th to insert a VP shunt (tube) directly into the center of her brain, going in through the top of her head.  The shunt then goes under her skin, behind her ear and over her collar bone down into her abdominal area to be re-absorbed into her body and then eliminated.  The shunt is programmable (by a magnet tool) so they can control the drainage depending on what her body needs to avoid headaches.
She has been in the hospital since the 15th recovering.  The surgery was more involved than we thought.  She is supposed to move into the rehab section of Wake Med Raleigh today, February 20th to receive 7-14 days of rehab.  They will space out rehab throughout the day so she can get a total of 3 hours of rehab a day.  We hope to start seeing improvement soon.  We understand it takes a while for the pressure to get off the brain, and for the brain to heal.  Please pray with us that this surgery and rehab will heal her completely!

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