Lisa Boone

For the last 25 yrs I have seen about every specialist there is trying to get answers to what has been going on with my body.

Here is a list of my symptoms that have occurred over the last 25 yrs and in chronological order:
I had a wreck at 15yo and a few years later saw a chiropractor that hurt me and I never went back, TMJ symptoms I thought was caused from having braces, headaches that felt like tension headaches at the base of my skull, pain that went all up and down my spine, 1st baby at 29yo and severe back pain that started 6months after, 1st nerve ablation in my back to help with the sciatic pain, sinus surgery, tubes in ears due to ear pain, surgery to repair my ruptured eardrum, 2nd baby, hysterectomy 9 months later from irregular bleeding and endometriosis, multiple nerve ablations in neck, knee pain followed by multiple injections, IT band injections, cornea of both eyes removed and patched with placenta due to damage from dry eyes, diagnosed with sleep apnea, bilateral SI joints fused, brain fog, memory loss, and allergy shots.

It has been one thing after another. Most of what I have been through is because of the stress the tethered cord puts on my central nervous system.

My most recent diagnosis in Aug 2023 is a Chiari malformation of my brain diagnosed with a cervical MRI at American Health Imaging. I had an MRI in 2017 and 2022 and there was no mention of my Chiari malformation at that time. It was confirmed by the neurosurgeon’s PA that it was present on both of those scans and is negligence on the radiologist for not mentioning it I have had to have 3 other MRI’s since August to test how well the cerebrospinal fluid is flowing to my brain (which isn’t good and explains the fatigue and brain fog) , a brain MRI to confirm the malformation, and an MRI to test whether my spine was stable.

After all that, it is confirmed by my neurosurgeon that I need my cervical disc replaced at C5-6 and fused due to my unstable neck. I have a tethered cord that I will need surgery to release and believed to be the cause of my Chiari malformation in my brain. In addition, the neurosurgeon says my joints in my fingers are hypermobile and said that I have hypermobile Ehler Danlos syndrome.

As far as the tethered cord diagnosis there are 2 different ways to approach surgery. One way is done in the US, more invasive, should be covered by insurance, 6-8weeks recovery, involves surgery within the spinal cord. The other method is done in Barcelona, Spain, 3 days recovery but requires a 12 day stay in order for post-op visit, surgery method is outside of the spinal cord, LESS INVASIVE, insurance does not cover and cost $21,000 for the surgery and around $10,000 for travel, accommodations, and food.

After all of that I have been through I hope to raise awareness of the negligence that took place by the radiologists not reporting my chiari malformation on my MRI in 2017 and 2022. This has delayed me being able to get treatment not to mention the copious amount of money I have spent on DR’s, physical therapy, searching for the right chiropractor because I could never hold my alignment(not knowing I had Ehler Danlos syndrome and a chiari malformation) and exposure to radiation almost every time, massage therapy, years of pain management and many injections and nerve ablations in neck and back, and years of medication to control my symptoms.

I am in working with an organization called Help Hope Live that is a national non-profit and going to help guide me into fundraising and help disperse the money where needed to include paying for surgery and any living expenses while out of work.

I no longer have short-term or long-term disability so I will be out of work with no pay. It is going to be extra hard because my husband is being forced to relocate his barber shop in 5 Points so a chicken restaurant can have two spaces.

His shop has been there close to 80yrs and one of the oldest shops around. It doesn’t make sense and, in a way, feels like a huge loss. We can only hope all the clientele will follow but that isn’t always the case. This couldn’t come at a worse time, but the pain has gotten to be unbearable to continue working full-time like this.

My cervical fusion is scheduled for May 13 at MUSC with Dr. Patel, who is one of the best surgeons for Chiari in the south. This surgery has a deductible of $7,500 and whatever it will cost for physical therapy. After I recover, I will decide to either let Dr. Patel perform my tethered cord surgery or go to Barcelona for filum surgery. I would much rather do the less invasive that has much success vs the other but if I can’t get enough money, I will be forced to have surgery in the US.

So, if someone you know has suffered from many ailments to include migraines and chronic pain, and autoimmune disorders it wouldn’t hurt to submit your cervical MRI for Barcelona to review to make sure you don’t have a Chiari malformation. If you do, they will request for you to submit a thoracic and lumber mri. If it wasn’t mentioned on my MRI on 2 different occasions, I can only imagine all the people walking around undiagnosed.

Thank you for taking the time to read,
Lisa

My family and friends are raising money for the nonprofit Help Hope Live in my honor to fund uninsured medical expenses associated with Catastrophic Illness.

I have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. And please share my page on your social media platforms. Every donation helps.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!