My name is Laura. I created this GFM page for my friend Rick and his wife Stephanie to draw attention to their dire need for financial assistance. People spend money frivolously daily on little things that bring happiness to their day. IE: Coffee, doughnuts, video game subscriptions and so on. Stephanie and Rick have been fighting for so long, and out of desperate need/love, Rick reached out to me as a friend for advice. I put this GFM together to link them with global communities that may have the power to assist. As a friend who's known them since high school, I know their love together is tried and true for one another, and I do not know of a couple more deserving of support and love from the community. Following this statement from me is a synopsis of Stephanie's medical battle. I hope that you will take the time to read what Rick wrote about the wife he adores. I had to shorten it by several pages, but suffice it to say, there is deep love in every paragraph.

I ask that anyone that can donate please help them out. I also ask, whether you contribute or not, that you share this on every one of your social platforms. Rick is terrified, and I know Stephanie is as well. . . We have a chance to help save a family from potential tragedy. I hope that we can come together and help them. Stephanie needs higher-quality doctors, and the plan is to send her out west for a stint with a team of specialists to help her get a proper diagnosis that can hopefully help her overcome this debilitating pain.

Stephanie's back story (written by her husband Rick). . . She is a 33-year-old mother of one, the best wife a man could ask for, a friend to animals, and an expert baker. She is an incredibly giving person who worked in an elderly care facility as an activities coordinator for a subset of patients with memory problems. Her life changed dramatically on August 20, 2020, when she underwent surgery for placement of a VP shunt to control her diagnosis of idiopathic intracranial hypertension. Around 2012, Stephanie's optometrist notified her that she was starting to lose her peripheral vision. This loss was so minor that she hadn’t noticed it herself. She had just undergone a partial hysterectomy due to scar tissue adhesions caused by a botched C-section when our daughter was born; we were living with her parents and actively trying to get out of the situation, but it was apparent she was making an effort to eat healthier. Keep this C-section in mind for later.

Flash forward to late 2018. She had gone to see a neurologist for her

increasingly worsening headaches. Radiology suspected that she might have a

Chiari I malformation due to the finding of low-lying cerebellar tonsils. It was in

her plans to follow up about this, but in April 2019, I had an accident that rendered me blind in my left eye. Five subsequent surgeries over that year to try and save what was left of my vision meant she didn’t have much time to think of herself. It wasn’t until 2020 that I had the presence of mind (and the end of my medical drama) to start pushing for her to figure out what was going on. The headaches had gotten worse. She was starting to have events where she would be primarily blind in both eyes for up to an hour, if not wholly.

If she laughed too hard, she would get debilitating headaches. She said to me at one

the point is that the crippling headaches after laughing were the worst of it because it

One of the reasons she fell in love with me was taken from her. That year was a rush. Of course, there was the pandemic at the forefront. But as time passed, I became more concerned about what was happening to her. I started demanding answers. I pushed her to go when she was disgusted with the doctors’ lack of empathy and wanted nothing further to do with them. Seeing your wife crying in agony because she coughed too hard is one hell of a motivator, let me tell you- and I had already lived this once in the 5-year saga of her abdominal adhesions, and I wasn’t about to do it again. We found a neurosurgeon in Nashville that seemed willing to help her. They listened to her story and suspected that she might have idiopathic intracranial hypertension. They did some testing and sent her to have a lumbar puncture done, where they found an opening pressure of 27, confirming the diagnosis. We couldn’t afford insurance

at the time, this was paid out of pocket, and the rest we still owe. The neurosurgeon’s office agreed to implant a VP shunt to help with her intracranial pressure and hopefully desist her visual loss, which had progressed rapidly in the last year. She decided to the surgery. Please keep in mind that I’m skipping a LOT in the interest of brevity- like how she was given Diamox for six months in a vain attempt to control her intracranial pressure and the horrible side effects she

dealt with. I had a lot of reservations about the procedure but had agreed to let

her pursue her care in her way and in her own time.

Her life- our lives, her family’s life- changed for the worse in August of

2020. She had the shunt placed. In her own words, when she woke up from the

surgery, she screamed in pain. It was uncontrolled with morphine, so they

gave her something more substantial (possibly fentanyl, I’d have to go back and look at

the clinical notes), which only knocked her out. She went back

twice to the ER, complaining of substantial abdominal pain. The first time, a minor

revision was performed, attempting to locate the distal end of the catheter up

by her liver, along with a bit of clearing of scar tissue.

The second time, they told her they had no idea what was wrong with her and sent her on her way.

This is where it all started spiraling out of control.

We were told before the surgery, we would have three follow-up visits. They discharged her as a patient after the second visit, stating that her neurological condition was improved and to follow up with her general surgeon concerning the abdominal pain. When she presented to the neurosurgeon’s office for follow-up and didn’t display 1) immediate improvement and 2) started asking why she was in so much pain and why her neurological symptoms were not only still present but worsening, their attitude changed. I had to go to their office myself and tell them, “Okay, you can’t do anything about the stomach pain- but she’s still having visual problems, and new things have started up since surgery. We need ANSWERS.”

They relented and allowed her a final visit, during which we were treated

literally like peasants (remember, no insurance). We had imaging done after some intense dialogue. Of course, nothing was apparent on the imaging, which cemented their conviction that nothing was wrong and gave them the justification they needed to discharge her as a patient.

The following year was an absolute roller coaster through hell. Stephanie’s

condition rapidly declined. She had no energy, continued visual incidents, body temperature issues, worsening abdominal pain, and a feeling she could only say was like she was dying. I was freaking out. I had no idea what was

wrong, but I had been reading about IIH. Since all the medical

literature repeats the same statement- “Overweight women of childbearing

age”- I decided a visit to the endocrinologist was in order, thinking it’s a

hormonal problem (which I still think plays a part). We went to see one, and I

explained my suspicions. He wasn’t sold on my reasoning,

but he listened and agreed to do a hormone panel. Imagine our surprise when she was asked to do a second hormone panel to confirm a diagnosis of secondary adrenal insufficiency!

Our medical system is corrupt, but I believe there are good doctors out there willing to lend a hand. We need assistance to find them. We need assistance to help OTHERS find them. This is not just about us; the immediate goal is to get Stephanie back to some semblance of normal. We want to help others get the help they need, too, but we need to blaze the trail so that others don’t experience the things she has. I cannot say how discouraging it is for doctors to do nothing or act like you or your wife are crazy. I can see why some people give up and live with their conditions. However… I am not a quitter, and neither is Stephanie. She needs your help and my help to improve and help others suffering from similar issues.

Stephanie’s Conditions

I beg of you, please help me protect my wife from dying of neglect and a system built around money. I cannot let her waste away in pain, I have to exhaust all options to help her. I beg with all my heart and soul for any help and patronage that you are capable of giving.

-Rick