Help Support Natalie's Brain Surgery Recovery in July

 I’m Katie, Natalie’s older sister. Being her Older sister, It is very hard to write this… Natalie needs love & support right now for her upcoming Brain Surgery at Cleveland Clinic. Her Cerebellum needs repaired, from a condition that has become vital to fix, we are hopeful this will help Natalie’s quality of life!

I know that it comes as a shock to many people. Natalie has been dealing with a steady decline in her health for several years, and didn’t know what was happening to her fully, until recently.

Natalie’s surgery is scheduled for 7:30am, Monday, July 1st and recovery will take a minimum of 6-8 wks.

• A video, below further explains Natalie’s diagnosis and planned surgery to repair.

Natalie’s Story leading to Brain surgery.

For those interested. It is wordy but, Will make sense by the end.

In 2006, Almost 20 years ago now, Natalie was a Junior in High School. She started feeling sick with flu-like symptoms. My mom brought her to the ER, she was soon discharged home with the flu, she was told to rest and hydrate. Once home she became sicker, started having neck stiffness, and becoming lethargic. My Mom rushed her back to the ER 2 more times, where they finally did a Lumbar Puncture and found that she had Meningitis B.

Meningitis is inflammation, caused by infection of the layers surrounding the brain and spinal cord. It can be fatal and requires immediate medical care. By the time meningitis was found in Natalie, Infection was given a 4 day head-start.

Natalie spent 2 months in the hospital (14 days of this in isolation) in Neuro-ICU. At that time, I was a 19, and a Nurses aide. I remember going to help her bathe, after work. It was a traumatic and scary time for Natalie. I don’t remember much, but I do remember how frail she was, that really scared me. Her Neurologist did tell my mom this could be fatal. 

Since meningitis B progresses quickly, it is important to have early diagnosis and treatment as there can be severe and lasting consequences of this disease. Natalie thankfully survived, we all moved on, but she has been living with the invisible long-term consequences of meningitis for 20 years.

Natalie has tirelessly advocated for herself with specialists trying to get help. There is a stigma attached to having a chronic illness like hers and has caused her to be not believed by many. Because it’s invisible. She’s been admitted to the hospital multiple times over the last couple years for weird anomalies doctors can’t explain. In 2019, she started having chest pains and doctors found blood clots on her lungs, but couldn’t say why? She was on blood thinners for a year. After a year, her cardiologist told her “I have no idea what caused the clots, just a fluke?” um, ok?… She was referred to many specialists, that were of no help. Has been nauseous every day for years with Brain fog/massive pressure headaches, eye pain, ect… She developed POTS (Postural orthostatic tachycardia syndrome) triggered when a person stands up after sitting or lying down. Causing lightheadedness, fainting, and rapid heartbeat, which are relieved by lying down again. Making it very difficult to get through a day, she can no longer drive atm. 4 years and Covid passed by and no one could figure out what was going on?

Earlier this year 2024, with nowhere to turn, Natalie went to her Family doctor NP who told her “Well, all this is related to your Chiari” Natalie had no idea what that condition even was? MRI Images of her Brain in 2019, looking for a clot source, notated Chiari Malformation.

Chiari Malformation (CM) (kee-AH-ree) is rare, can become serious neurological disorder. Where the bottom part of the brain, the cerebellum, descends out of the skull and if large enough crowds the spinal cord and blocks fluid, putting pressure on both the brain and spine. This causes a cascade of symptoms that are very hard to live with. It’s hard finding a doctor who is knowledgeable and has experience treating it, hard finding information on what’s happening to your body and harder to explain to people when you don’t even know what’s happening.

Natalie was finally referred to a Cleveland Clinic Neurosurgeon who specializes in Chiari.

He did several tests and special MRIs.

He concluded that she does have a significant Chiari, However acquired type from Arachnoiditis, a very rare condition that can be caused by Meningitis. Scarring on her brain that has a spiderweb look. The only likely cause for this happening is the Meningitis she had at 17 years old. 

Scarring has trapped her cerebellum, pulling it down, and adhered it to the base of her skull like glue. There is very little Spinal CSF fluid movement, “Like a dripping faucet”. Which creates immense pressure in her skull and eyes. The neurosurgeon told us he needs to preform what’s called a Decompression Surgery; of the cerebellum to free and cleanup the scar tissue holding the cerebellum down. 

This is a major surgery, Her neurosurgeon did say the damage that is deeper in her brain and vascular will remain. She will live with long-term impairment from Meningitis.

Animation explaining~Chiari Malformation

*Warning Surgical animation near the end. 

Along with Chiari, Natalie has spiderweb like scarring /inflammation around her brain(arachnoiditis), likely from meningitis as a teen, which is rare. She will need to follow-up with a Skull based doctor after surgery to look at how they can help. 

End of medical story…

Natalie is nervous, but relieved her voice was heard by her surgeon and she has some answers. We are all hopeful this surgery will make her quality of life much better!

Natalie does her best to keep going for her kids. As you can imagine, the series of events has caused a huge financial blow for Natalie. As she tries to maintain monthly expenses for her home and kids needs in the coming months, our small family will rally around her.

My Mom, Stepdad, Close friends & I will take care of Natalie’s kids during this time. My Nephew Keegan knows some and my Neice Sophia, knows very little. Keegan starts Butler High School as a freshman, next year. Mid-Summer, Band Camp starts several days a week. He may be able to walk some, any Butler Band members headed that way and can help carpool would be helpful! 

Cleveland Clinic is 3.5 hrs away. For testing/Visit she has traveled to Cleveland x3 and stayed overnight. I’m planning on going there at any point if needed to help and get her home.

Natalie will have to spend a week or longer at Cleveland Clinic inpatient recovering, 2 nights in ICU, then move to a step-down unit. My Mom wanted to sleep by Natalie’s bedside. Unfortunately, she won’t be able to stay in Natalie‘s inpatient room. She will have to purchase a hotel room, for the entire first week of July. Natalie needs to arrive the day before surgery and stay. After checking rates prices will be $1,000-$1,300 for 1 week. Depending on when she is discharged.

Once home she will have to recover for 6 to 8 weeks, If all goes well. She will be unable to work for several weeks, if not longer.

Two weeks after surgery, She would have needed to travel back to Cleveland for a post-op check. If all is well and healing, she can do a virtual visit. Good news, I get to care for her incision! So we might not have to go back, so soon!

Small ways you can give support!

Comment on her Personal page with words of support, anyway to let her know you are thinking of her, meal/gas; gift cards, help with family meals, Small dollar amount donations are welcome.

Continued prayers always!

Love & Kindness!

Sharing is really helping and free!

https://gofund.me/d081e8dc

Every donation is set to go straight into Natalie’s Savings acct…

Use of these funds will only be withdrawn to help supporting Natalie through Surgery & Recovery. Portions of Travel, Hotel fees, out of pocket medical needs, maintaining home, Kids needs, & groceries. All support will help her so much!

At this point in her journey, I want to reciprocate the level of kindness that she projects to the world and remind her of how much she is loved. She will truly appreciate it.

THANK YOU!

I will continue to update Natalie’s Journey, as I am able!