My name is Karrie Forgues, I am swallowing my pride and asking for help for me and my family. Here is my story:
For the last several years a mystery illness has taken over my body, every system has been affected. I haven’t been able to work in 4 years, I have been bedridden since 2019, and the doctors have been unable to figure out why I’m so ill. We have spent the last 6 years ruling out illness after illness, yet no answers have been provided. We flew to Duke University in December as the doctors were sure I had a CSF leak but Duke ruled it out - another dead end.
I took to the internet to research myself what could possibly be causing my illness and CCI (craniocervical instability) kept coming up. After doing an at-home traction trial our suspicions were confirmed as the results were outstanding. We then met with a geneticist who confirmed our next fear, I have hEDS (hypermobile Ehlers-Danlos syndrome) and we are waiting on genetic testing for vEDS (vascular Ehlers-Danlos syndrome).
After many doctors and specialists and years of suffering I flew to SC to meet the world-renowned Dr. Sunil Patel, who is one of only four neurosurgeons in the U.S. who specializes in CCI, and he was able to tell me why I am so ill.
I was diagnosed with CCI, tethered cord, and Eagles syndrome. It is believed EDS is the cause of all these conditions.
You are probably thinking, “But I’ve never heard of these illnesses?” Well, that’s because they are all rare illnesses. I am now processing the fact I have 4 rare illnesses, and how that will affect my life, my family, future and recovery.
Dr. Patel has recommended I have the tethered cord surgery done here in RI due to the severity of my condition, financial hardship and travel being incredibly difficult in my condition. We are hoping the RI hospital will work with my insurance.
Once I have recovered from the tethered cord surgery I will be scheduled for a occipital-cervical fusion. This is a 8-10 hour surgery which my neurosurgeon described as “barbaric”, but necessary. Without these surgeries I will decline further, the surgeries are meant to stop the progression of these conditions but cannot guarantee I will not have permanent deficits. I will need extensive PT after both surgeries.
As it stands right now none of the 4 specialized neurosurgeons who diagnose and treat this condition can work with MA Medicaid. I have called every major hospital in MA and only Lahey Hospital has agreed to see me due to rare and complex nature of this surgery.
If this surgeon does not feel comfortable doing this surgery or lacks any experience even with insurance I would be looking at paying $4k indeductibles and 20% of both surgeries.
The average cost of OCF surgery is 100k-300k and tethered cord around 100k.
The financial burden with my not being able to work, the cost of travel and the recovery will be staggering for my family. Due to the fact I have MassHealth and both surgeons are out-of-network and out-of-state the burden of these surgeries may fall to my family. I will keep you posted if this occurs. We are beginning the process of battling insurance.
For the first time in years hopelessness has been replaced with Hope. Despair has been replaced with a plan. I have strived to stay as positive as possible during this devastating illness and having answers has given me renewed purpose.
If you have read this far I cannot thank you enough for your compassion and support. Please share this with as many as you can as even $5 will help my family. I promise when I am well enough to pay this kindness forward to our community.
I will post another update in a week after I meet the neurosurgeon at Lahey on Wednesday!
Karrie, Steve, Ella and Luke
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