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Support for Julies Brain Surgery Recovery

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Hello friends and families,

As some of you already know, my brother’s wife, Julie, had brain surgery on March 9th to remove what they thought was a cavernoma vascular malformation, which is made up of abnormal blood vessels and looks like a raspberry.  Once surgery was underway it turned out to be more serious and complicated. It was an AVM (a brain arteriovenous malformation), which is a tangle of abnormal blood vessels connecting arteries and veins in the brain. The AVM was in the “sensory” and “motor” part of her brain.

The surgeon originally thought Julie would walk out of the hospital three days after the surgery, but Instead of walking out of the hospital, she spent a week in ICU at Mass General.  She was then transferred to Spaulding Rehab in Boston for two weeks for intense rehab for left side weakness and sensory deficit that affects her ability to balance her body.

Once Julie was released after the two weeks, she came home for at-home PT, OT and speech therapy three times a week. This is for cognitive issues, weakness and ADL (activities of daily living). She can not walk without the walker and the support from my brother behind her. She was given a wheelchair (thanks to one of her friends), so that helps her have some independence. She also has reduced fine/gross motor control (proprioception) and she is still having intermittent seizures.

Once the at-home therapy stops and Julie recovers sufficiently, which means that she is strong enough to leave the house, she will require out-patient therapy.

The recovery will include many months of therapy. I am setting up this page to try to get my brother and sister-in-law some support with all the medical bills that they have and will receive. My brother works hard, but there is only so much one person can do. He is also Julie’s full time care taker while he is working from home (for now) and I couldn’t be more proud of him. Julie is also working very hard too. I can’t see her, but I do talk to her and she told me even if it takes an hour to do a simple task, she is determined to do it by herself so she can recover as soon as she possibly can. I am so proud of her determination and dedication to her rehabilitation.


Below is a little bit of a timeline of when it all started and what she has gone through:

At the beginning of 2017, Julie went to the doctor for some weird feelings she was experiencing. The doctors diagnosed it as, “panic attacks, anxiety”.

In May 2017, Julie’s mom passed away at which time she tried to take care of her dad in his home and work full time as these weird feelings continued.

In 2018, Julie’s dad moved in with Julie and my brother as it was too much working full time and taking care of him. Julie left her job to stay home as her dad required full time care. The weird feelings continued and still were considered “panic attacks, anxiety” by doctors.

May 2019, Julie’s dad passed away and still the “panic attacks, anxiety” continued.

September 2019, Julie started a new job, and within four weeks of working, she had a severe attack at work. The doctor thought it was a TIA (transient ischemic attack) which is a mini stroke. Four days later she was let go from her job, without any notice, because she was not performing up to their expectations. I remember her calling me and she was devastated.

October 2019, the MRI confirmed a brain bleed due to a vascular malformation.

These so called, “panic attacks, anxiety” for the past three years were actually seizures and micro-bleeds caused by the vascular malformation.

Original care started at Dartmouth Hitchcock Medical Center in October 2019

Julie was referred to Mass General Hospital in Boston, this being in the top three hospitals in the country who specialize in the care that Julie needed.

With many trips to Mass General consulting with neurologists and neurosurgeons, a specialized MRI was ordered by the neurosurgeon. After seeing the results, the conclusion was that it was best to remove it to stop future seizures and bleeding.


Just to break it down a little bit so it makes sense:  They have already paid out of pocket $6580.00 for MRI's and multiple appointments between Valley Regional Hospital, DHMC and Mass General.  This does not include her inpatient stay at Mass General, Spaulding Rehab, the therapy that she is receiving now at home and the therapy she will receive once she is able to leave the house. 

I know everyone is struggling, especially with the shut down of some businesses and lost wages, as we are too. But if you could give any donation and then share with your network, I would greatly appreciate it. The dollar amount does not matter, even $5 will help. I wish I could give them all that they need, but I can’t. Setting up this page was the one thing that I thought of that I could do to at least try to lesson some of their burden. Thank you for taking the time to read this, even if you can’t donate, it is okay. I understand we are not the only ones fighting something. Please reach out to me anytime if you have any questions.  Love and good health to you all.
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Donations 

  • Tammy Coleman
    • $50 
    • 3 yrs
  • Priscilla Hull
    • $50 
    • 3 yrs
  • Brenda Soucy
    • $25 
    • 4 yrs
  • ken sicko
    • $25 
    • 4 yrs
  • Virginia Davis
    • $200 
    • 4 yrs
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Organizer and beneficiary

Brewster Chris
Organizer
Amherst, NH
Robert Davis
Beneficiary

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