Stephanie's IH Journey

Update:  In less than 24 hours you all have raised just shy of the $1000 with the gofundme administration fees.  My heart is so full.  I cannot thank thise of you who donated and shared enough.  I have updated the goal to 5k in order to help with the many many medical bills she currently has and will have after her upcoming procedured.  Insurance is great when they cover things but unfortunately not every test is covered.  Let's see how far we can get together!  





Stephanie's-Journey-With-Intracranial-Hypertension
This is her blog!

Let's talk about this invisibile illness for a second. First and foremost, it's not an illness it's a condition, and for some a (complication.) And, a condition that's very broad if you will. People suffer in very different ways, but suffer collectively none the less.

It can range from very manageable, to being a death sentence, with a high rate of suicide being attached. Loving someone with IH can be just as painful as the condition itself, I'm able to recognize that as an outsider.

This is Stephanie's 31 month journey in a nutshell!

Have you ever just looked in the mirror, and thought what's the point? Before y'all start jumping on her for being negative or behaving irrationally, She does actually have a point...

We have watched our friend change dramatically over the past 2 years. She has aged. She is tired. She has fought and she has won. She has fought and failed. But the point is, she has fought for it, all the ups and downs. She is forced to wait months in between specialty appointments, and travel to and from Phoenix.  It's hard on her and it's exhausting. But she does it, because she wants to get better. She NEEDS to get better. She NEEDs a quality of life. She sees one Dr and togethr they make a plan, is referred to another and it's completely different. Not once or twice.

Every. Damn. Time.

The problem is, this condition, illness call it what you want.  It is REAL and she does take what they say seriously, after all, it's her life hanging in the balance!  Most recently, Stephanie went in with a plan, and it seemed like it was a pretty cut and dry thing, proved me wrong... It's hard to discuss shunt options when the surgeon doesn't even place shunts. "He's the Stint guy"

Alright, back at step one.

Again.

For the third time.

Had the MRV done, and her ventricles are fine... So now it's on to an MRA, much more invasive-and if by the grace of God he finds something repairable, that has to wait a week after angio. When she was told SPECIFICALLY, they angio AND place stints in one go, as to lessen the trauma to the artery.

Add two more meds to the mix between the 2 procedures, mind you still no appointment for the first one. I'm sure they will take their time with that "It'll take about a week" gesture. But okay, She’ll wait.

Because why?  She has no other choice...So it is what she’s does and has gotten quite good at it.  

There's so much info being left out, it's too much to type, but that's the basics of it. Lots of tears. Lots of bad words. Lots of arguing. And she has still yet to find a Dr, even a "World renowned Brain Surgeon" that can answer my question... How did she get have a TVH, that's a hysterectomy through your vagina by the way, and wake up with a brain injury? Someone? Anyone? Nothing!
 

So yeah, I'll ask again. What's the point? Yet another surgery-that they will kindly "make her comfortable for" to determine if another one is needed. To the determine if a third one is needed.

Can someone please tell me where in H-E-double damn hockey sticks Dr. Derek Shepard is?  Or even freaking Amelia for cripes sake??? We NEED them for our friend Stephanie. She deserves THEM.  

So instead she is stuck with pain that is indescribable, personality changes, rapid ups and downs, lots of appointments with hit or miss treatments recommended, varying degrees of competence completing day to day tasks.  What is worse??? Well she chooses not to show her very worst on most occasions, not because she doesn't feel that her struggles are not deserving, but because in many instances it turns to judgements rather then awareness.

She chooses share her positive side, the part of her that IS, WAS, and ALWAYS WILL BE strong and willing to fight. There are very few who see her at my lowest, it's a vulnerable time and it hurts physically and mentally but for those of us that have seen it….

Tears don’t begin to describe how much you hurt for her but guess what?  It does nothing for her. So I created this page because it is what I CAN DO for her.  It is what TOGETHER we CAN do for her and her family. We CAN lesson the financially burden this invisible illness has caused because she has a date friends to HOPEFULLY move one step closer.  

June 17th they will be headed to Phoenix for my surgery on the 18th. Check in time, 0600

This is either 1 of 2, or 1 of 3 operations in the coming weeks or months.

If you are a Spiritual person, she would love it if you kept her and her my family in mind. This is really step one of an already hard fought 31 month journey. It's been painful, a huge learning opportunity, and tested the limits of what they can handle as a family. Her husband Drew has on many occasions had to work while she was hospitalized, but Gabby, her oldest daughter, stepped up and took amazing care of her brother and sister. Sometimes for days at a time...Talk about a kid who is capable beyond her years...We are all so proud of her!

They did it together. They made it work. And whatever comes their way they are ready.

So please my friends contribute what you can and please share for my friend Stephanie to gain a quality of life...for HER...for her FAMILY….to lesson the financial strain this invisible disease has caused them….to show kindness and compassion….to show her we CARE!  

So what is IH?(information taken from the Intracranial Hypertension Research website at https://ihrfoundation.org/hypertension/info/C16)

Intracranial hypertension literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high. “Intracranial” means “within the skull.” “Hypertension” means “high fluid pressure.” To understand how this happens, it’s helpful to look at the basic anatomy of the brain and skull, as well as the process in which cerebrospinal fluid is created and absorbed.

Cerebrospinal fluid is one of three major components inside the skull; the other two are the blood supply (the arteries and veins known as the vasculature) that the brain requires to function and the brain itself. Under normal circumstances, these components work together in a delicate balance. A pressure and volume relationship exists between CSF, the brain and the vasculature.

CSF has several important functions. It cushions the brain within the skull, transports nutrients to brain tissue and carries waste away. 

Elevated CSF pressure is transmitted around the brain and along the optic nerve (sub-arachnoid space) producing papilledema.

Cerebrospinal fluid flows from the choroid plexus through the brain’s four, interconnecting ventricles before finally entering the sub-arachnoid space, which surrounds the brain and spinal cord. The fluid then flows over the brain and spinal cord and is eventually absorbed into the venous blood system through tiny, one-way channels called arachnoid granulations or villi.

When this continuous cycle of CSF production, circulation and absorption functions normally, it regulates the volume of CSF in the skull and the fluid pressure remains at a constant level. In other words, the CSF production rate remains equal to the CSF absorption rate.

But when the body cannot effectively absorb or drain CSF, intracranial pressure increases within the skull, which is made of bone and cannot expand. And since the brain and the vasculature can only be compressed so far, intracranial pressure must rise. Intracranial hypertension in adults is generally defined as intracranial pressure that reaches 250mmH2O or above.