Aid Krista Brack's Fight for Health and Hope

TLDR: I could use some help. I will need to go back and forth to NY multiple times over the next year for medical care. I am going to have a lot of expenses related to medical care that we aren't able to cover, such as deductibles and copays as well as travel expenses. I am raising money for my own needs and not a second party.

My name is Krista Brack, I am disabled and unable to work. I have been disabled for almost all of my adult life due to a collection of medical conditions I live with. This is my first gofundme to cover medical bills. I am very overwhelmed with the need to have a collection of surgeries out of the state that I live in (USA, medical insurance dystopian nightmare). The conditions are Classic -Ehlers Danlos Syndrome(C-EDS), Chiari Malformation(CM), intracranial hypertension, tethered cord syndrome, gastroparesis and autonomic dysfunction.

A little about me - I am 47, married 20 years and have lived my life in Rhode Island. I attended Toll Gate HS and graduated in 1996. I attended Johnson and Wales University until I dropped out due to illness. I was a motivated youngster and worked as much as I could early on. This was a big help for me when I became permanently disabled at 28. I was able to get SSDI because I started working so young and was able to build the credits needed from 10+ years of employment.

I have been in pain all of my life. I don't know what a life without pain feels like. While I was able to maintain employment a short time and graduate HS, I did so while missing many days and often being on temporary medical leave. My family took me to the doctors and hospitals throughout my upbringing, however nothing was ever properly diagnosed or treated. I was often told that I was imagining my pain and that it was not real. I was put on many medications to treat mental illness that I did not have. They had convinced me that I was imagining it. When my husband wanted to marry me I made him read a book on my supposed mental disorder to make sure he wanted to stay with me. I made him read a book about a medical condition I never had. Somehow, my husband never believed all that garbage anyway. He helped to convince me to look again for physical medical reasons for my situation.

Following an MVA that I was a passenger not wearing a seatbelt, I could no longer work. I kept trying to go back but my body would not function.

During the accident my head went into but not through the windshield of the car. My knees probably saved my life. My knees went into and got trapped in the glovebox/dash of the car and that kept me from propelling right through the windshield. One good thing about this accident was that I never again rode in a car without a seatbelt and I would not drive anyone not wearing one.

The other benefit of this accident was that an MRI of my head was ordered. I had been begging for an MRI of my head for years. I have lived my entire life up to this point with a migraine. This MRI set me on the right path to finally get the right diagnosis and treatment. I was diagnosed with Chiari Malformation first, as it was seen on the MRI, the rest came in the next few years as I was able to see specialists in these rare diseases. But that meant leaving my home and traveling to where the specialists ARE. For me, I found them in New York. (EDITED TO ADD: At that time, Dr. Klinge was not practicing in Rhode Island and I was referred to The Chiari Institute in New York. I don't believe TCI is still functioning, I followed my neurosurgeon when he left that practice and will follow him anywhere. He saved my life. He owns it now ;) )

I have been seeing my medical team in New York for many years now, almost as long as I have been married. I was married in 2004, I became disabled by 2006 and I made it to NY in 2007. Currently I have undergone 7 brain surgeries and 3 spinal cord surgeries, and countless procedures since then.

Once I was diagnosed I looked for information about Chiari Malformation and Ehlers Danlos Syndromes and how they were connected. I found next to nothing (2007-2009). I went to a medical library and absorbed as much information as I could. I searched for others with these conditions and in a twist of fate was introduced to the community through cannabis. I became a cannabis patient in my state in 2010 to treat the constant pain from nerve damage and the ever present migraines. Upon becoming a cannabis patient I joined a state advocacy group and through them met my first friend with EDS in person. She helped me find the confidence to start working with advocacy groups and speak publicly about what I was living through. Doing that helped me build the confidence I needed to start a support group for people with EDS in my home state of Rhode Island. I did that in 2013, and RI-EDS is running today with over 700 members. I have used this platform (gofundme) in the past to help me get to medical conferences all over the country. I travel to these events and learn as much as possible to bring back and share with my group. I am able to meet doctors and make connections in the community to help not just myself but anyone else I can.

I was at one of these conferences in 2018 when our home burned down. We lost one of our beloved cats and just about everything we owned. Insurance fought us for every penny and we are still trying to replace items lost in the fire that they wouldn't cover or covered at a much reduced price. We should have hired an arbator but we didn't know that at the time. About 6 months before the fire I had my second spinal cord surgery. At the time of that surgery my doctor suspected I had another condition, Intracranial Hypertension. We were getting tests set up for that, but I put it on hold to deal with the house. My body would only allow that for so long and in 2019 I had my second brain surgery followed days later by the 3rd, months later by the 4th followed quickly by the 5th in 2020 (At this point our house is rebuilt and we are back home), then again in 2021(6) and again in 2022(7). In 2023 my brain gave me a break but my body did not and I endured my third spinal cord surgery in 2023.

I wish I could say that 2024 would break this tradition, it will not.

At the heart of all of this, is the fact that all of my medical conditions are considered rare. That means that, in addition to having very few doctors that treat these conditions, most have no 'proven' treatments. Basically everything we do is experimental. For anyone not aware, medical insurance in the USA does not like to cover experimental and will do everything they can to refuse the treatment. That means that for coverage I am often subjected to painful and invasive testing in order to 'prove' an issue is happening and get them to cover the treatment my doctor suggests. More testing and treatments is more money out of pocket for me. It is copays and deductibles and travelling expenses. It is double the travel expenses because I can not travel alone. My husband or someone else has to take me, that means they take off work and they need to eat and if I am kept in the hospital they need a hotel room. My husband has often slept in the car at the hospital because we couldn't afford anything else.

The current situation after meeting with my medical team in New York yesterday, is that I need a lot of work.

I have a VP shunt, a medical device in my brain to control the intracranial pressure and drain the excess off, it failed sometime in March or early April.

1. Shunt Malfunction – I am showing signs and symptoms of both high and low intracranial pressure. We know my shunt valve is broken, but we don’t know what is happening with the pressures in my brain right now. The plan is to do an intracranial pressure bolt, I have had this done previously in 2019. This involves putting a bolt into my skull and having a catheter put in my brain to measure the intracranial pressure in real time. This is the most accurate test available and is very invasive. I will be knocked out to have the bolt put in, but they will remove it while I am awake. (what FUN!) Unlike my first ICP experience this time the bolt will only be in a short time, up to 24 hours. Following that test they will switch out my broken shunt. We know the valve is busted; the doctor also believes that the tubing may be clogged up. If it is they will need to replace the tubing as well.

2. Finding the cause of the high pressure is the only way to possibly fix it. The shunt is just a bad band aide and will continue to fail. My imaging suggests that my left jugular vein is being compressed. Bones in my neck are pinching it off. He said it is like a garden hose on full blast being stepped on by a big boot. Appearances aren’t everything though and so we will be doing a venogram after a short break to recover from the shunt surgery. He tells me that there are 3 possible outcomes to the venogram.

A. Imaging is right, and the jugular vein is compressed. If this is true, then they will decompress the nerve and I may not need a shunt when it is fixed. (best case scenario)

B. Imaging is not accurate, and the vein isn’t compressed (No change to current treatment plan)

C. The vein is compressed but collapses on itself when the pressure is relieved, if this is true, I will need a STENT to keep it open and may still need a shunt (worst case scenario)

3. T-Spine – imaging shows that I am partially dislocating the vertebrae in my thoracic spine. All of my medical team agrees it is because of the weight of my breasts. In addition to meeting with my NS I also saw the plastic surgeon who has closed all my surgical incisions in New York. He has agreed to do the breast reduction for me. We are planning the breast surgery for early October to be sure I am healed prior to my planned trip to Paris for Christmas. I am told the stitches will be extensive and I will be miserable for a few weeks. I have been advised to see a lymphedema specialist prior to this surgery as it may cause issues to my lymphatic system. Great, fix a problem and create another. Sounds like my life!

4. MALS surgery should be done at this point (after brains and boobs, OH MY), prior to any surgery we do on my lumbar spine, unless testing reveals an emergency, or I get a drop foot. (this is when the foot drops and you can’t lift it) If that happens, I will have to have surgery in 48 hours or risk permanent damage to my spine.

5. Lumbar spine – I have been in AGONY with my low back for almost a year now. There were some suggestions it may be tethered cord for the 4th time, but I am super happy to say that does not appear to be the case. Based off my symptoms and reactions to different treatment attempts the current theory is that what is happening with my Tspine is also happening with my Lspine but because the imaging is supine, they are not seeing it. The plan is to get some imaging in flexion and extension. We discussed it and he let me know it was going to be extremely painful but that it is very important that they get the imaging in that position (why? So that insurance will pay for the surgery that is why I must be tortured.) If the imaging shows that I am dislocating my spine when I bend back or front, then I will need a lumbar fusion to fix it. Why is this happening? Because I have had 3 tethered cord surgeries. The first one was before they knew better, and they had to cut multiple vertebrae in my spine to get to my spinal cord. Over time, especially with the increase in weight, this has broken down more and can no longer support me. This may be causing me the most physical pain, but it is the least dangerous issue in my body right now. The kicker to this is that once they do get here and I can get my back fused I should then be in dramatically less pain and more able to move that will help me lose the extra weight I put on that contributed to the damage of the spine in the first place. It is a circle where there is no end.

The most difficult aspect of all of this is dealing with insurance. You would think it would be all the holes they keep putting in my skull but that part, for me at least, is easy. The constant need of filling out forms, getting more imaging, nerve conduction tests and invasive, often painful, procedures just to prove my highly trained specialists know wtf they are doing, is the absolute worst.

I love my medical team. I mean I LOVE my medical team. I spent so many years fighting for someone to believe me. I still get massive anxiety prior to these appointments. Not because I am afraid of the long list of medical mischief I have in store for me, no I am terrified they will see nothing, say I am imagining it and tell me I am wasting their time. The day before the appointment I was so afraid. This is the damage of a lifetime of medical personnel trauma. I have a complete disconnect from what my body is feeling and what my brain will allow. I wish so much I could have faith in my own voice, but it was squashed, crushed and set on fire by the doctors and nurses of my youth and early adulthood. They told me time and again I was fine. I am now at 47 planning not just my 8th brain surgery but the 9th and 10th. I was never fine.

Get to the point already! Broken shunts makes for babble and increases oversharing :)

I could use some help. I will need to go back and forth to NY multiple times over the next year. I am going to have a lot of expenses that we aren't able to cover. In addition to travel expenses and co-pays, I will also need to pay my deductible of 1,800. There will be an upcharge to my breast reduction that is not covered by insurance. I have spoken to many people who have had this done and most of them suggested getting the side boob reduced at the same time to avoid issues down the line. Insurance will not cover this and it will be at least 3,600. I will need to put down 1,000 in order to schedule the surgery and then I will need to pay the balance at the pre-op appointment.

Why am I asking for money when I am planning on going to Vegas and Paris this year? First off, if you don't want to donate...don't. Second, the Vegas trip has been planned for quite some time. It is for our 20th Anniversary and while I was willing to cancel it if my neurosurgeon thought I should, nothing else would take this away from us. Paris is a gift. I am sure we will spend money on these trips but it won't be the money I am raising here.

I have had so many people over the years exclaim 'I don't know HOW you do IT!'

How I live this life is by LIVING IT. If you think/ask how can I do this, in relation to all the surgery and medical trauma my answer is this;

Knowing I was going to Vegas has been the thought that has keep me going the last 6 months of agony and uncertainty.

Thoughts of Paris at Christmas is what will help me manage the absolute HORROR I am feeling about drastically changing my body with a breast reduction.

Getting to the medical team I need and paying the fees involved is what will keep me going, it is quite literally how I do this, and I would love your help to get there.