Hi everyone! This is a fundraiser for Connie Rim. This is a REAL fundraising page for her. As many of us know, Connie has been struggling with debilitating CSF leaks, which have caused her to be bedridden. Despite doctors trying to help, none of them have been successful and she remains stuck in bed and in a great amount of pain, which becomes extremely severe at times. Connie has been given the opportunity to be seen at the Mayo Clinic, with doctors who feel confident that they can help her. This doesn't come without a huge financial burden though. She needs to pay for flights, hotel accommodations, food and of course, medical bills.

Despite her suffering, Connie has always been concerned for others. She raises money and awareness for the Spinal CSF Leak Foundation and she volunteered with the Global Gene's 2023 RARE Compassion Program this year.

We need to help take this burden from her and get her to doctors that can give her the life back that she deserves! Please donate!

Below is her story, in her own words, for those that may not know:

For those who are new to my page or want to know the summary of my journey so far, here you go:

During a cervical surgery (for herniated disks), the dura was accidentally cut and subsequently covered with fibrin. Then a tube was inserted in my neck to see if there would be any CSF collection. After three days, there was no fluid, so despite feeling very sick, they discharged me. When I got home, the pain became the worst pain of my life. I went back to the hospital and an MRI showed CSF collection in my cervical area. They inserted a lumbar drain to remove the excess fluid for several days and then performed a lumbar blood patch and sent me home.

Symptoms were ongoing, severe and rare as I was not able to walk or speak properly. Everything was wrong. I was in and out of hospitals.

A year later, another doctor performed exploratory surgery and a leak was found in my lumbar (from the drain). He repaired it with sutures and fibrin. I spent a week at the hospital and another week at a physical rehabilitation center. I thought I was on the road to recovery. But after a couple weeks of fighting high pressure, I became sick again with low pressure.

I had many blood patches but they either didn’t work or lasted 1-7 days. I had yet another exploratory surgery in my neck (through the back) but he said he only saw a dural defect but it wasn’t actively leaking. He covered it with fibrin and sent me home. There was no improvement.

Another year later of hospital visits, an image finally showed one of the screws from my INITIAL surgery looked to be piercing the dura so I underwent surgery in the cervical again (but this time, through the front). Again, they found a defect but it wasn’t actively leaking but they sutured and covered it with fibrin.

Again, no change but when I had a blood patch after that surgery, I felt incredible. It was like night and day. But after two months, I quickly deteriorated, and I am back in bed again.

I had another blood patch (#16) but it did nothing so I’m at a loss. I’ve been referred to 2 doctors and I’m waiting.

Sadly, we are each so unique with our bodies, our leaks and our recovery so it’s difficult to determine what is the best course of action. Also, having connective tissue disorders, like Ehlers-danlos, makes it that much more difficult.

A doctor told me that my leak could be coming from over 25 different locations because of a lumbar drain, an intrathecal infusion, 3 cervical surgeries, a lumbar surgery, 16 blood patches (some multi-level), unknown number of myelograms and LPs, so it is very difficult to treat because they don’t know where to go from here.

Like many of you, I’m physically and mentally spent but I’m still fighting. I don’t know where this story will end, but I will be grateful if I one day, I can have several hours of upright time. Time will tell.