Save Mandy’s Brain

Save Mandy’s Brain, Save Mandy’s Eyesight, Save Mandy’s Life

**** If you decide to donate you do NOT have to tip 10% to GoFundMe. Scroll down and chose “Other” then add zero — thank you! “

Mandy’s Journey in her own words follow after her mother’s 

Who She Is 

Mandy is our cherished daughter, the mother of our adorable grandson, and newlywed to Joe — a U.S. Navy serviceman. She has a beautiful and generous soul who never complains about anything especially her health.  Mandy has been a devoted single mother to her son for several years while trying to ensure their future by pursuing an education in healthcare. She is unable to join her husband because of her health. They live on opposite coasts as he serves the Navy.

What Happened 

Last fall Mandy developed a two month excruciating and debilitating headache that would not go away. 

We soon knew she was in serious trouble when other symptoms quickly overwhelmed her: swelling in her eyes that was threatening permanent vision loss, heart attack -like episodes, the inability to think clearly and compute simple grade school math (she excelled in college level physics), extreme fatigue, increased pain, and personality changes.

She saw several specialists that concluded her brain was under extreme pressure. They didn’t know why. They were able to buy her time with medications while she waited to see an out of state neuro-vascular surgeon who deals with rare cases like hers. He is hopeful but is unsure of how many brain and skull surgeries she will need — possibly up to four.  He is honest and is unsure of what will help but he’s willing to try:  Brain angiogram(done), stent one of her transverse sinuses, CSF pressure evaluation, VP shunt,  Chiari Malformation decompression, and a skull to C2 fusion if instability develops. We pray there is no further intervention needed after the placing of the stent. 

He believes the complications in her brain are a result of Ehlers Danlos Syndrome, a rare hereditary connective tissue disorder.

A severe Chiari Malformation was also found. This is where the base of the brain is pushed down through the skull. It can crush the brain stem and cause all kinds of havoc to include death.

Mandy was leading what appeared to be a normal life when her brain decided to quit compensating for the chaos going on inside her beautiful head. Her body began to fail and fail fast. Her son also has Ehlers Danlos Syndrome and needs his mom around to help advocate for him and continue to be his world. She’s pretty awesome! 

What Your Help Will Mean To Her & Her Family

•That she is not alone because people really do care.

•Reduced financial strain from the mounting medical bills which means less stress during the worst time of her life.

•Additional family support when it matters most (Her husband returning from CA). 

•Peace of mind knowing her son is well taken care of while we (grandparents) are at her side.

•Relief from some of the bills she has incurred since she’s been too ill to work.

Where Your Donation Will Go

Your money will go towards:

 • 20% of the allowed amount of her brain surgery/angiograms (surgeries). (She has a $3000.00 catastrophic cap per year)

•To help pay for specialists. (currently $600.00)

•Travel and lodging expenses as her neuro-vascular team is out of state. (Estimated $800.00)

•Airfare to bring her husband home.(Estimated $1200.00)

•Care for her son. (Estimated $250.00)

•Help with bills (Estimated $500.00).

How You Can Help 

• Please write a small post about how you know Mandy, what’s she meant in your life ( or her relatives, friends etc), and what’s she’s going through. A few heartfelt words will get people to look at her campaign when they don’t know her. She won’t get lost in the sea of content on social media. Please Share her Go Fund Me campaign often!

•Every five dollars will make a difference. That’s a couple gallons of gas towards the four hour round trip by car to see her neurosurgeon. 

•Please help spread the word by sharing Mandy’s link on your Facebook and social media page!

Thank you so much for your generosity. You are a light on a very dark path. 

God Bless you! - Mitch & Lynn Erickson

Mandys’s Own Words

Hello family and friends,

This is going to be a VERY long post.

Almost none of you know, but I have been very sick, more so within the past year. I've remained very private about what was happening, but now that I'm about to have brain surgery (or surgeries) it's time to tell my story. I've been thinking long and hard about everything, and I hope when you are reading my story, it makes sense. I'm not going to use medical terminology, I just want it to be easy to understand.

To simply put it, there is immense pressure inside my skull. This is putting the brain under terrible pressure and stress, it is literally crushing structures in my brain, it is causing fluids to leak into places it shouldn't be, and my brain is coming out of the hole in the base of the skull. It is wreaking havoc all over, and causing things to fail system-wide. Doesn't that sound like a hot mess?

Over the summer and early fall something really bad happened (nobody knows what exactly), and I took a turn for the worse. It seemed like my body was giving up, and I thought I was dying. My eyes could barely work- the whole world was like a bizarre dream. It took every bit of energy to focus my eyes. Hearing was a chore as well... I heard sounds in a pulsing fashioning. Everything was loud and everything was bright. I developed high blood pressure, I gained 30lbs+ in 4 months(the thought behind rapid weight gain is that the high pressure is crushing the area of your brain that deals with metabolism). I wasn't eating much, and I was tired all the time. I had a terrible, excruciating pressure headache that lasted for 2 straight months, no breaks. A pressure headache feels like body builders are squeezing in on your head... And my eyes, man... Feels like I want to shove my thumbs into them and give them counter pressure. The pressure in my head is so high that I have developed papilledema, an eye condition. It is taken very seriously, and is followed very closely because it will cause permanent vision loss if left to its own. I already have decreased vision in my left eye, but I'm hoping that it will return after my surgery. One of the more disturbing things that was happening to me, was that I could hear the blood squirting through my veins right behind my left ear. It sounded like someone squirting hair gel through a medicine syringe. It kept me up at night, and it wouldn't stop. Sometimes it was so loud others could hear it. Just think about that. My brain was making noises so loud that other people could hear. These are just a tiny glimpse of what I've had to endure/am enduring.

I was immediately put on a medication that was told would reduce CSF(fluid around your brain) production. The medication brought great relief to many of my symptoms... Both the ones I've listed for you guys and the ones I haven't. The medication is not a cure though. Whenever I miss a dose, I am immediately reminded that I am broken still.

My next step was to wait to see the *amazing* neuro vascular surgeon, Kenneth Liu at Penn State. He is the expert in the field, and the man I needed to see. I waited months to get in to see him, and my dear mom went with me to that appointment. I was extremely nervous. I was hoping and praying he would know what was wrong with me through how I presented clinically and all my imaging (I had so much imaging and had a binder FULL of records!)

To simplify the story and make it easy to follow, he said I had two major issues... 1. The veins that drain blood into the jugular veins are severely narrowed, so he suspected blood couldn't get out of my brain properly, and 2. I have a severe case of Chiari Malformation, brain coming out of the hole in the bottom of the brain (this acts like a cork preventing fluid, that should be free flowing, from having necessary movement.).

Both issues are thought to be the culprits for high pressure. Amungst much discussion, we decided to investigate #1 first.

Last week I had a cerebral angiogram. This is where they stick wires through your leg (venous system and arterial system) and feed them all the way up into the brain so they can look around and gather data. I was in the hospital for 8 hours for this, and it was far from fun... But I'm SO lucky that I was able to have my mom there with me! :)

What he found is this... Both veins that drain into the jugulars are severely stenosed (think of a rubber band wrapped around it and constricting it). Blood is backing up right there at those specific veins and causing pressure to be 4 to 5 times normal down the line on the arterial side!!! That's crazy, you guys. We don't even know what's going on with the Cerebrospinal fluid pressure from #2. Now, we at least have on record that my brain is in trouble.

Here is a list of the surgeries that I am facing right now:

1. Brain Stent
2. Second Brain Stent
3. Shunt
4. Chiari Decompression (This is THE worst one, Google if you are interested)

Yesterday I scheduled brain surgery #1. It will be on June 14.

It's really hard to talk about. I'm a very stoic person; I've always been. That's why I've been able to carry on without anybody noticing. Don't get me wrong, I've spent so many moments of my days wiping tears from my face. This is painful. This is hard. This is terrifying. I just suck it up and carry on with a smile on my face... Mostly for Kel. :) That's been both a blessing and a curse. Because I look normal on the outside, and because I'm able to pull myself together to function without complaining, I think this news will come as a shock to most of you. I just ask that nobody treats me differently. I'm the same ol' Mandy you've always known, now you just know a bit more about me!

I've already told a few friends and family members. They've been so quick to reply with "How can I help? Or "Please let me help you." (Super sweet!) My mom has been SO kind to set up a GoFundMe campaign for me. If you would like to help out, donating to the campaign would be how. If you can't help in that way, sharing the campaign would be helpful. Also, good ol' fashioned prayers, well wishes, positive vibes, and amazing energy are ALWAYS appreciated and welcomed!

If you're interested in following my story.... Surgeries, hospital visits, recovery, specialists, etc... My mom will update via the GoFundMe page. I do not have the emotional energy to keep you guys updated via my Facebook.

Anyways, I think that's enough for now. Love you all.


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Lynn Melichar Erickson 
Hanover, MD
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