We have set up this account for our daughter Taylor, who early in 2015, was diagnosed with a rare and horribly painful disease known as Trigeminal Neuralgia (TN) , as well as a found unruptured cerebral aneurysm.
Taylor has undergone a craniotomy (Microvascular Decompression), as well as endovascular surgical procedures. Please read her the UPDATE section below, as well as the timeline of events that have taken place.
Thank you to EVERYONE who has donated, continues to donate, friends, family, strangers, new friends that we have made along this journey. To everyone who prays, sends positive and healing thoughts and continues to be involved with Taylor's story.
We all are forever grateful!
Thank you to all who have kept Taylor in your thoughts are prayers these past 24+ hours on November 27th. Repeat Aseptic Meningitis scares are no fun at all. The pain is always at its worst. Her neck stiffens, yet body becomes weaker. After hours of treating pain and nausea it was agreed to hold off on Lumbar puncture with close monitoring. Taylor has had multiple lumbar puncture over this past year, which on their own cause a whole host of side effects and risks. Many of which cause a worsening of her condition and set backs. So we continue to help her rest and manage pain, hoping her body will stop fighting itself and calm down soon.
As of September 2016, sadly it was offiically determined that Taylor's MVD craniotmy failed. Unfortunately, her Trigeminal Neurgalia continues to progress/worsen. At this time, we continue to wait to see two new Specialist's at OHSU that have been requested by Taylor's Neurosurgeon to join her team, as it is believed that there is an underlying UNDIAGNOSED DISEASE that is causing A) Her Trigeminal Neuralgia to progress rapidly and B) Causing her body to react by way of Autoimmune response, which in turn is not allowing her craniotomy incision of March 11, 2016 to heal to this day.
*November 17, 2015, Taylor underwent Microvascular Decompression/Craniotomy Surgery in hopes of trearting her Trigeminal Neuralgia. Nine days later, on Thanksgiving Day, she was admitted into the hospital due to Aseptic Meningitis.
As a result of the Meningitis, Taylor now has bilaterial moderate to severe, permanent hearing loss.
*January 18, 2016Two months post surgery, she had complications with her incision and was hospitalized back up at OHSU.
*January 27, 2015, Taylor underwent a Cerebral Endovascular procedure to address the unruptured aneurysm found incidentally.
The following 9 months, Taylor had undergone several follow up endovascular procedures to ensure success.
*March 11, 2016, Taylor underwent emergency revision surgery for her MVD craniotomy, due to complications and refusal to heal.
*March through September 2016, Taylor underwent additional endovascular procedures for her aneurysm.
As of September 21, 2017. With lifelong monitoring and medication, Taylor officially became a Brain Aneurysm Survivor!!!
*October of 2016, with the help of donations and largely by extended family supportwe were able to help relocate Taylor and her husband closer to her family and medical team!!! No more 10 plus hour travel days!
All of the funds rasied/raise continue to go directly towards Taylor's living expenses, medical expenses and travel.
A little more about the onset of Taylor's TN...
Taylor is amazing. Anyone who knows her will describe her as being one of the sweetest, caring and most talented people you could ever meet. She has dedicated her young life to caring for the elderly; focusing majority of this time on providing ‘end of life care’ to those in residential Memory Care Facilities.
Taylor has spent the last 3 plus years, struggling with unexplained painful and rare injuries. Despite these, she continued to stay committed to her job and the people she cared for. Unfortunately, as of September 2014, this changed, when new symptoms of extreme pain on the right side of her face and head came on so quickly that she needed urgent medical attention.
In June of 2015, it was confirmed that Taylor has a diagnosis of Trigeminal Neuralgia (TN). Soon after, Taylor was forced to voluntarily resign from her position as Medication Aid/Caregiver due to her Disabilities.
A rare Neurological Disease, TN is often referenced to as ‘The Suicide Disease’. It is described as being the most painful condition known to man. Simple things that we would not think as painful cause extreme uncontrollable pain for Taylor. These things often include; a breeze from a door shutting or being outside, her hair or clothing touching her face, applying makeup, brushing her teeth, biting/chewing, drinking something hot or cold and nothing at all.
Taylor now has partial peripheral vision loss in her right eye; she struggles with extreme pain on the side of her right head and face, constantly and is never pain free. On top of this pain, she suffers from the TN attacks daily. She is struggling with memory and cognition and often time’s needs assistance with her own Activities of Daily Living. Her sweet and talented husband Nathan has become her Caregiver.
A little more about Taylor…
Aside from caring for her patients, Taylor has the biggest heart when it comes to rescuing any kind of animal. This began at such an early age and continues to this day. She has rescued and rehabilitated many furry and feathered critters over the years. She has also fostered and cared for other people’s animals when they were unable to do so due to their own medical conditions.
Taylor’s outlet has always been her artwork; she has developed her own unique style working mostly in pen and ink. She loves to take the subject and create a story around it, by altering its look and adding unexpected details.
Taylor and Nathan would love to start having their artwork printed to sell.
Our Family thanks you for any help you can give to Taylor. We will be posting updates often and photos of Taylor's Artwork.
These repeat aseptic Meningitis scares are never easy to get through. She had a rough 7 days, then suddenly things go from bad to absolutely horrible, very quickly. This hasn't been the first time and unfortunately won't be the last.
Brain inflammation and her own body attacking itself has been a constant issue and one that we are desperately seeking answers for.
Meanwhile, she is home resting and being closely monitored by Nathan.
Thank you again for all of your support, prayers, thoughts and well wishes!
This year has been rough, to say the least, but we are so grateful for the success of her cerebral aneurysm treatment! She officially is an aneurysm survivor!!!
We still await upcoming appointments with the additional specialists joining her teak and pray that between all of them, they will be able to determine WHAT is the cause of her incision failing to heal after all this time, as well as what other options do we have to address the Trigeminal Neuralgia that unfortunately continues to progress.
We are very happy to share that with generous help from family, 3 weeks ago, we were able to relocate Taylor and Nathan nearer to our family and OHSU!!!!
It was a very short window of opportunity, so they had to move quick! Now 15 mins away from Mum and Dad vs 2.5 hours away is a significant difference for all of us!!!
Taylor and Nathan have been through so much these past 2 years, we are so proud of how positive they continue to be!
To be continued soon....we will be posting some special Christmas cards for order, designed by Taylor, in hopes of helping them with living expenses and car repairs as Nathan seeks employment.
Thank you so much to all of our friends and family, new friends we have made along this journey, complete strangers that been generous in their giving, prayers and positive and healing thoughts.
A special thank you to our close friend Dave, as well as all of the our fellow compassionate Etsy members who have done and continue to do more than they probably realize!!! *hugs to all of you*
Please keep prayers and thoughts coming....she is in A LOT of pain and having a reaction to the dye. Still having a difficult time getting things under control.
Pain and attacks have been very bad these past few weeks. (Likewise, confusion, nausea, etc.)
We are still awaiting the appts with the two new specialists that she's been referred to.
Thank you for all of your prayers, positive vibes, messages and donations :)
Tomorrow she will once again undergo a follow up procedure for her cerebral aneurysm.
Side effects of medications, change in weather and the fact that her craniotomy incision continues to refuse to heal, we are praying and hoping that this one goes very easy and results in Taylor being able to stop her blood thinners.
Thank you to everyone who continues to share Taylor's story, continue to pray and send positive thoughts of healing and to those who have been able to donate to her campaign. We continue to appreciate everything!!!
Just found your page and although I can't afford to donate, I'm sending you lots of healing and love. I don't know you but I have suffered from trigeminal neuralgia also. However not on the scale you have. I know most people don't understand and they may think you're crazy. It took years for anyone to believe me that the pain is unbearable. It feels horrible to have an "invisible illness". I sincerely hope you are on your way to relief. Hugs from a stranger. ❤️
Dear Taylor, I hope that your surgery went well today; and I hope that you will be feeling better soon. I also hope and pray that healing and curing is most prominent for you! I met your mom online today. You are Very Strong! Hugs sent from MD to you, Lynn