106
106
10

Erin's Medical Fund

$20,125 of $20,000 goal

Raised by 143 people in 19 months
Created December 2, 2017
Many of you know a little bit of my sister Erin's story.  You've asked for updates and info and I've fumbled through words to try and explain Erin's conditions, surgeries, and upcoming appointments.  We are at a pivotol moment in Erin's health journey and am hoping a broad overview would be helpful for a greater understanding into Erin's world now.  (Note: this is BRIEF and not even close to a glimpse of all of Erin's history or symptoms) Erin's Medical Overview: After wrestling with excruciating headaches, nausea, back pain and other symptoms since the age of 6, Erin was finally diagnosed in 2010 with a Chiari Malformation (brainstem disorder), hydrocephalus, dysautonomia, interstitial cystitis, and an underlying genetic vascular connective tissue disorder, which means all of her organs; arteries, brain, intestines, skin, heart, etc., are made with faulty collagen, elastin and protein. They are subject to not working properly, spontaneous rupture, tearing, and rapid deterioration. There is no cure for a connective tissue disorder. The best "treatment" is undergoing surgery to repair organs that have been damaged.  She had her first brain surgery seven years ago and has since undergone over 28 surgeries which included placing a shunt in her brain to address the swelling (due to overproduction of cerebral spinal fluid), fusing her skull to tailbone with titanium rods, and removing her large intestine. Four years ago, both of her carotid arteries and her right vertebral dissected and occluded in the middle of the night and she had a stroke. Last year she developed Addison's disease due to the stress on her body from constant back pain that has not responded to any treatment or medication. Erin moved in with me and Nathan 2 years ago; having to leave Washington D.C. after her health prevented her from continuing to work. We were hoping ATL would have some new options to help her, but unfortunately most of her time here has been filled with disappointment, doctors unwilling to take on a medical anomoly, and lots of medical debt. On a daily basis she currently experiences constant nausea, uncontrollable back pain, headaches that vary in severity, extreme discomfort from eating or drinking, dizziness, and about 10 other symptoms. What's next? While certain surgeries have put out fires, Erin's quality of life is declining and the connective tissue disorder is progressing.  Most of the medications, supplements, and procedures have not been fruitful as to date and there's been no treatment to address the underlying genetic condition.  However, Erin is currently seeing a physician who has recommended a cutting edge treatment to hopefully improve the communication between her brain and organs, which could give Erin's body an opportunity to heal and manage symptoms better. It could give her a chance at a future.  The treatment would include a mesenchymal stem cell IV (NOT taken from embryos) and Nicotinamide Adenine Dinucleotide, an all natural, holistic amino acid treatment, which are expensive and unfortunately, not covered by insurance. Erin has already used her life savings paying for medical care and we are at a dead end as far as options, both medically and financially. Erin is losing hope and the repercussions of her constant pain are weighing on her.   How can you help? Financially - This is definitely out of Erin's comfort zone, knowing I am asking for financial help for her, but I'm willing to do whatever it takes.  Erin has always done whatever it takes to care for others and I am honored to ask people for assistance in a hopeless time. If you have questions or want more detailed information, please don't hesistate to ask. Prayer - your prayers are coveted for Erin.  Please pray for her doctor to provide the correct course of action, these experimental procedures to ease her pain and for renewed hope for Erin!
+ Read More
Hello Friends,
This trip has been very helpful in figuring out what's going on with Erin. The plan has changed significantly since arriving.

Her shunt is working fine so we will leave that alone. The high pressure in the brain she is experiencing looks like it's coming from the unfused spaces in her neck. But before surgery to completely fuse the last two spots in her neck, she and Jo are going home to try a treatment called prolotherapy which injects and irritant in the neck causing it to stiffen up. The thinking is this may replace the need for a fusion. The tentative plan if the prolotherapy doesn't help is to come back in a few months and have surgery to fuse the 3 open levels in her neck. Since this will remove all of Erin's mobility and make her unable to bend her head forward, her neurosurgeon is recommending this treatment essentially just for our own peace of mind to know we tried everything before putting more rods and screws into her neck.

As for the lower back, a nerve block showed us that the pain is coming from too much motion in her spine which was very hard to believe since she's fused and feels so stiff. So instead of removing the hardware, it needs to be reinforced as several screws are broken and show too much movement of the vertebrae. She'll have surgery to take care of that after trying the prolotherapy in the neck.

Back in Georgia, she'll also begin the process of doing nerve blocks then ablating (burning out) the nerves and facets at the root along her entire spine. She's done this nerve ablation prior to the fusion surgery but it didn't provide enough pain relief, however it may make a difference now that she's fused.

Overall, we learned so much this trip. Getting through the next few months will be daunting but we want to be absolutely sure about the decision before fusing the last bit of her neck.

Thank you, friends for your love and support!
+ Read More
Since Feb 23rd, Erin and Jo have been in DC working with her neurosurgeon, Dr Henderson, going through tests to discuss the next step. Tomorrow she'll be admitted to Doctors Community Hospital for an intracranial pressure monitor for 24-72 hours to help determine the source of the worsening symptoms.

Imaging shows compression in her spinal canal allowing only intermittent drainage of cerebral spinal fluid which is consistent with her symptoms. Tomorrow's test, which is a small probe under the skull, which reads pressure in the brain, will hopefully help us determine if fusing (stabilizing with rods and screws) the two non-fused sections of her neck will help and allow for more CSF drainage.

We are also discussing the risks/benefits of removing the hardware (rods and screws) from her mid back to tailbone. This particular fusion has not helped but caused more pain. Removing it could either allow her to regain movement and have less pain or it could cause additional complications.

Lastly, we are trying to determine if the shunt is malfunctioning or if the issues are coming from somewhere else.

We anticipate being at the Holiday Inn at Greenbelt for awhile as we try and make the best decisions possible to improve her quality of life. We appreciate all of your love and concern .
+ Read More
We've been hesitant to post an update as there hasn't been much good news to share. Erin is near housebound and has to stay flat/ reclined most of the time due to uncontrollable pain in her spine, fluctuating CSF pressure in the brain, and severe weakness.

After undergoing 13 surgeries during her 2 month hospital stay through May and June, she's undergone one more brain and abdominal surgery. In August, a local neurosurgeon removed the shunt in her head and switched out the one in her abdomen. She will continue to need this surgery throughout her life when the shunt malfunctions... the hope is that there is more than a few weeks in between. Thankfully, the current shunt has been working sufficiently for over 3 months.

Erin has had to indefinitely postpone the surgery to remove the hardware in her spine due to her current state. She continues to weaken in spite of all medical interventions but we have hope that a recent cellular boosting supplement plan will slow the progression. Erin has found a doctor who understands the gravity of the situation, but she unfortunately is not covered by insurance. We humbly ask for your prayers for Dr. Mastrogianakis to have the wisdom to provide life changing care. We are looking for a flicker of light at the end of the tunnel. Thank you for your concern and love.
+ Read More
May 22, 2018

Dear Sweet Friends and family, 

It's been since Friday that I've had the VP shunt (the brain one) externalized which just means that parts of it are still inside my body and some are now outside so the neurosurgeon can ensure that the device is working. It seems to be working yet I'm stillhaving so many of the symptoms as if it weren't.

With the high likelyhood the catheter in the brain will clog again within days and the fact that I'm not recovering as well from the brain surgeries, it looks like my only option is to go back to the previous type of shunt I used to have called the lumboperitonealshunt (LP). 

At 1:00 pm today I'll undergo another surgery to put in the LP shunt again. Instead of draining cerebral spinal fluid directly from the ventricle in the brain that makes the fluid, the catheter is placed in the spine and the CSF is drained from there. Thisshunt will also be temporarily externalized so we can make changes to to over the next few days. If we get to a point where it seems to be controlling the symptoms, all of the parts will be put inside.

Since getting my first LP shunt in 2011, I averaged 2 "failures" a year due to the tubing clogging so neither of these choices are ideal but it's all we have at this time. The bottom line is that it's easier for me to recover from a shunt repair surgery in the lumbar/stomach area than a shunt repair surgery in the brain.

While it is unknown whether switching back to the LP shunt will stabilize my symptoms, it seems like the only choice moving forward. 

With love, Erin
+ Read More
Read a Previous Update

$20,125 of $20,000 goal

Raised by 143 people in 19 months
Created December 2, 2017
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
SD
$100
Sam and John Denner
1 month ago
IC
$2,000
Irma Christie
1 month ago
$200
Anonymous
3 months ago
TL
$200
Tony Law
3 months ago
EW
$50
Eleanor Worley
3 months ago
CM
$100
Carmen Marquardt
3 months ago
SO
$50
Sarah Oglesby
3 months ago
AC
$100
Angie Cherry
3 months ago
RB
$100
Rob & Sharri Brock
3 months ago
SP
$100
Susan Pinkham
3 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.