Help Karrie with Medical Travel expenses

After a 3+ year long battle, Our good friend Karrie received word yesterday that she has FINALLY been accepted to be a patient  with DUKE and  is being expedited due to the severity and rare complications she is experiencing. She has been tentatively scheduled to travel November 29-December 4th. The current wait to be seen at Duke is 6 months to a year so this just gives you a tiny glimpse as to how severe her condition is- but if you have the time to read her full story, I've outlined it below.

Karrie has worked extra hard to jump through every insurance and beurocratic  hoop and has finally received word that insurance will cover her Out of network cost of treatment and copays which is amazing, however she still needs financial help for travel etc.

In order for her to go to Duke and get the procedures and extensive testing she needs, she will have to travel, arrive early due to Covid, stay close to the hospital for several days after the procedures and lie completely flat to give her body the best chance to heal. Her boyfriend , who will still need to work to continue to support their family and living expenses back home, will need to do so from the hotel will she undergoes treatment and testing.  

It was also advised she lie completely flat during her travel and will need a minimum of 8 weeks to recover where she will not be able to bend, lift or twist her spine in any way. 

We are working to try to find medical travel for her, hotel accommodations, and care for her dog. Any donations will go directly to helping fund Karrie’s trips back and forth as they suspect she will need to be seen at Duke multiple times in the upcoming months in addition to her care team here. I want to make sure that they can still pay rent and have a home to come back to once her surgeries and treatments are complete.

Thank you so much for reading this far and if you are able to donate even a few dollars, any little bit helps.

Below is her entire story for those who have the time to read it <3

Thank you so much
Crystal Meyers- Farnsworth, LAc., and Friend

_______________________________________________________________

If you are taking the time out of your busy day to read this, thank you so much. First let me start by saying that Karrie is one of the strongest people I know. I am a Licensed acupuncturist in Boston and I have seen many people for chronic pain over the last 6 years-but none with the vast extent of illnesses yet such a strong will to overcome and get better then Karrie. Despite everything you are going to read below and all the hurtles, she still manages to keep a positive mindset and is an amazing mother, partner and friend and she is truly the biggest trooper I have ever known in my life. Once you read her story I think you might agree. Let’s go back almost 3 years.

I first met Karrie in early March of 2018 after she called my acupuncture clinic for help. I remember it distinctly because she was such a tough cookie! She asked me many questions and was extremely adamant when asking if I would be able to help her and be an advocate for her. I told her I would but boy was she SKEPTICAL and she made that known. It was clear that she had many poor experiences with health providers in her past and I wasn’t sure what to expect but I assured her we would do everything in our power to address her needs, listen to her and try to help. She made an appointment, came in and I began treating her for her many issues at the time. Over the course of the past 3 years I’ve gotten to know Karrie very well and she also became a good friend to me. I am here now to tell her story because she needs help and being the kind hearted, hard working mom of 2 that she is, she has never asked for help and doesn’t even know where to start but she really needs it. She has a lot of pride and it took a lot of convincing to get her to accept the idea of a go fund me page. Karrie has allowed me to share her story and I think it is important for you all to hear it both so you can understand the miscarriages of our health care system and so you can get a small glimpse of the long term suffering she has silently withstood.

In March of 2018 Karrie initially came to me for acupuncture treatments to help with her debilitating migraines, nerve pain, scoliosis/sciatica/chronic low back pain and numerous chronic autoimmune diseases including Lupus, Fibromyalgia and IBS,IC, occipital/trigeminal neuralgia and heart arrhythmia's. 

During the course of our treatments, Karrie was simultaneously seeing specialist after specialist, changing PCP to PCP to try to find anyone who could give her answers and offer any relief as her condition has declined over the past 3 years. 

In Early July 2018 Karrie began experiencing severe swelling and pain in her Right shoulder/neck area, her heart arrhythmias were becoming more frequent. (Her previous 3 heart ablations were  performed when her arrythmias were at 24,000 per day and was fainting multiple times daily as a result.)

She was unable to get a repeat ablation due to her doctor who performed the previous ones being out of her insurance network. 

By Late July 2018 Karrie went to another PCP and neurologist after getting no help from her previous ones and was told she had occipital and trigeminal neuralgia. She began getting treatment for the neuralgias including nerve blocks, Botox, trigger point injections, she was also tried on new migraine medicines. None gave her relief. She was sent to PT and a chiropractor, both exacerbated her issues. After 2 years treatment was stopped as it wasn’t improving her condition. 

One year later, by July 2019 she was experiencing debilitating neuropathy where her feet constantly felt like they were on fire and saw another neurologist who thought the neuropathy was secondary to degenerative disc disease and actually radiculopathy so they performed some more testing, more medicine and more needles. Nothing improved her condition. 

Meanwhile all her other symptoms were getting worse and more conditions were diagnosed. She experienced debilitating daily head pain, excruciating nerve pain, uncontrolled weight gain,  interstitial cystitis, IBS, neuropathy, severe skin sensitivity where she was unable to rest clothing over her arms, shoulder and back, lupus flares as well as heart arrythmias and occasional fainting. Her daily symptoms are to numerous to list. 

If you can name it, Karrie has probably had to live through it. Her entire body was under attack and drs didn’t know why. 

After months and months of seeing specialist after specialist, trying treatment after treatment and only receiving minimal relief if any and being diagnosed and treated for multiple illnesses, she was finally approved for a routine brain MRI in late August 2019. 

After going for that routine MRI her Dr. called her within 30 minutes to let her know he saw a blood clot in the brain telling her she needed to head to the ER for more imaging. She then did a contrast CT scan at beth Israel that came back with only calcification in a brain artery but discovered a brain anomoly where her brain was descending outside of her skull called a Chiari malformation.  At this point she was stuck researching what she could on her own and waiting for more information from the Doctor who ordered MRIs of her entire spine. There were no specialists for Chiari malformation as it is a rare illness. 

During this time her insurance has denied all requests resulting in her doctors spending months battling her insurance to get necessary imaging approved, further delaying her care. 

Chiari malformations are structural defects in the base of the skull and cerebellum, the part of the brain that controls balance.  Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it (called the foramen magnum).  When part of the cerebellum extends below the foramen magnum and into the upper spinal canal, it is called a Chiari malformation (CM). 

Chiari malformations may develop when part of the skull is smaller than normal or misshapen, which forces the cerebellum to be pushed down into the foramen magnum and spinal canal.  This causes pressure on the cerebellum and brain stem that may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)—the clear liquid that surrounds and cushions the brain and spinal cord.  The CSF also circulates nutrients and chemicals filtered from the blood and removes waste products from the brain.”

https://www.ninds.nih.gov/disorders/patient-caregiver-education/fact-sheets/chiari-malformation-fact-sheet#5


So basically her brain stem is sitting too low in her skull and literally coming out of her skull and putting pressure on her spinal cord. How horrifying… can you even imagine? And she has been battling the symptoms of this unknown condition over 15 years!


On October 23, 2019 Karrie came to my office in shambles reporting that the last few days were the "worst pain of my life". To be honest I was a little thrown, I had NEVER seen Karrie like this. She was always upbeat or at least tried to be (even when crying in pain on the table) and did her very best to stay strong despite her many roadblocks, but today was different. She was noticeably disheveled and unable to lie down. She was reporting incontinence, arrythmias and subsequent fainting, her entire upper back was seized to the touch (I had never seen her back like this before and I had given Karrie at least 100 treatments at this point) and she was unable to turn head to the right at all.


The main issue with this condition is that it is so rare, there are only two treatment centers in the world that specialize in it and both are out of state with long wait times. The only treatment for it is blood patching or surgery once the leak has been found which is extremely difficult with the imaging available to us today and as you could imagine- if it was your brain- you would probably want to seek out someone who specialized in this condition too right? Well, due to insurance restrictions her neurologist and doctors had to do what they could for her in state. 

As time went on Karrie’s condition worsened and she developed stuttering/slurring, tremors, loss of balance and an inability to move with ease. She looked like she had a stroke and Parkinson’s and has been living with these symptoms again since August 2020 when her second procedure failed. The longer she leaks the more her brain will herniate out of her skull. 

If the leak is left untreated she risks dementia, stroke, paralysis, coma and death. Getting her to a specialist could save her life in addition to giving her back quality of life. Imagine having to lie down 22 hours a day to reduce the crippling pain and impairments she is living with daily. 

A CSF leak is a condition that occurs when the CSF leaks through a defect in the dura or the skull. A CSF leak results from a hole or tear in the dura, the outermost layer of the meninges. Causes of the hole or tear can include head injury, brain or sinus surgery, IIH, lumbar punctures or be spontaneous. There are only 2 centers in the world specializing in csf leaks as they are extremely hard to diagnose and treat. 

By the time Karrie was approved for a procedure called an epidural blind blood patch she was spending most of her days lying down to help compensate for the leak. 

Karrie ended up getting a procedure in Boston to patch a CSF leak that her Dr. suspected was in her low back and was put on diuretics to help stabilize her rebound high pressure.

During this time all of her symptoms disappeared. Symptoms she has been living through for 15 + years unfortunately once the hole in her dura was sealed her body continued to over produce this cerebral spinal fluid which has kept her alive while leaking causing extreme head pain, nausea, vomiting, visual disturbances and chronic fevers. Doctors informed her this was called rebound high pressure. Over the course of December to July her head pain continued to increase and Doctors here were at a loss to help beyond diuretics which no matter how high they increased her dosage her pressure continued to rise to high levels and she began leaking again in July 2020. Doctors patched her again within a week and this patch only lasted 5 weeks due to the extreme high pressure. Doctors believe she has never had a migraine and may have undiagnosed idiopathic inter-cranial hypertension and the constant build up of fluid in her brain from this condition caused her leaks and will continue to do so unless addressed. Therefore patching her would be unproductive as her body would re-leak in order to protect her brain and Doctors here don’t have the knowledge or expertise to correct. 

Unfortunately due to a preexisting bladder condition diuretics were causing bladder damage so these drugs are not a long term option for her. Which mean she will most likely need brain surgery to add a shunt to her brain which will drain off the excess fluid allowing her brain and spine to finally heal after decades of suffering. It is not known what kind of lifelong deficits she will suffer. 

This means more testing, more battling insurance to get coverage and more waiting in her current condition. 

After much discussion with her team of doctors here in Boston she was advised in August of 2020 that he could did not have the specialized training to help her and her care team and they began the process of advocating for her to be seen at one of the specialist centers in the US- Duke hospital in North Carolina.

If you are still with us you might be realizing that we are now in November 2020. 

Karrie's health has declined so rapidly in the last 7 years she has not been able to work for the last 3 years. Karrie has a wonderful boyfriend  who works 12 hour days to support their family. With Karrie unable to work and ineligible for disability their family has made many changes and cuts in their family budget in order to make ends meet. 

Yesterday, Karrie got word that she was finally accepted to be a patient  with DUKE pending her insurance clearing and is being expedited due to the severity and rare complications she is experiencing. She has been tentatively scheduled to travel November 29-December 4th. The current wait to be seen at Duke is 6 months to a year. If insurance falls through she may need to wait further. 

In order for her to go to Duke and get the procedures and extensive testing she needs, she will have to travel, arrive early due to covid, stay close to the hospital for several days after the procedures and lie completely flat to give her body the best chance to heal. Her boyfriend  who will still need to work will need to do so from the hotel will she undergoes treatment and testing.  

It was also advised she lie completely flat during her travel and will need a minimum of 8 weeks to recover where she will not be able to bend, lift or twist her spine in any way. 

We are working to try to find medical travel for her, hotel accommodations, and care for her dog. Any donations will go directly to helping fund Karrie’s trips back and forth as they suspect she will need to be seen at Duke multiple times in the upcoming months in addition to her care team here. I want to make sure that they can still pay rent and have a home to come back to once her surgeries and treatments are complete.

Thank you so much for reading this far and if you are able to donate even a few dollars, any little bit helps.

Donations

 See top
  • Kris Murphy 
    • $50 
    • 1 d
  • Mohamad Ramadan 
    • $50 
    • 3 d
  • Anonymous 
    • $50 
    • 3 d
  • patti reilly 
    • $25 
    • 4 d
  • Zakia Jarrett 
    • $50 
    • 6 d
See all

Organizer and beneficiary

Crystal Meyers 
Organizer
Jamaica Plain, MA
Karrie Forgues 
Beneficiary

  • #1 fundraising platform

    People have raised more money on GoFundMe than anywhere else. Learn more

  • GoFundMe Guarantee

    In the rare case that something isn’t right, we will refund your donation. Learn more

  • Expert advice, 24/7

    Contact us with your questions and we’ll answer, day or night. Learn more