Heidi Worpenberg

First post: Apr 26, 2021 Latest post: Feb 10, 2022
     Hi everyone!  I want to first thank everyone who has reached out to me with prayers , thoughts , and love during this difficult time.  Your support means more then you will ever know as I go through surgery to remove my brain tumor Wednesday April 28th.
 My doctors told me it would be a good idea to start  this page so family and friends can go to one place to get all  my health updates .  So here I am, sitting at a hotel in Houston, Texas awaiting surgery and filling out a care page.  It’s  still hard to believe and a lot to take in.  

It all began with a headache before I was diagnosed with my tumor.   I was first diagnosed with migraines in 2019.  I was treated with almost every migraine medication available including Botox as a last resort but nothing seemed to help.  Around January 2020 my headaches were becoming unbearable.  I also started having other symptoms such as passing out, fatigue, muscle pain and weakness, insomnia, anxiety, high blood pressure , skin infections with itching, and daily nose bleeds.  After discussing my changes with my family physician I was referred to an endocrinologist.  My new specialist set me up with blood work and scheduled for a mri.  My blood work at first came back normal .  I had my first MRI may 2020.  Results showed a mass In my pituitary gland.    Scott and I were very upset and scared with this news.  After realizing my tumor was located in the posterior of my brain and I was dealing with a very rare tumor i knew I had to find a pituitary specialist .  Thanks to a helpful facebook page I found my  specialist but he was located in Los angelos.  Luckily since being in a  pandemic I was able to see my doctor through telehealth appointments .  His name is Dr Friedman and he has been a life saver through this process.   After 3 months of many doctor appointments, blood work, midnight saliva test, and 24 hour urine test, I was diagnosed with Cushings disease .  They believe my symptoms are being caused by a ACTH tumor, producing to much cortisol.   November 2020 I was then put on a therapy medication to help lower my cortisol.  Once starting the medication it instantly helped with many of my symptoms.  
Fast forward to January 2021.  My follow up MRI indicated My tumor had extended to my infundibulum and pituitary stalk, and was now invading my stalk.   Dr Friedman stated I needed to see a neurosurgeon but he didn’t trust anyone to treat my rare tumor besides Dr. Ian McCutcheons.  He is a well known neurosurgeon at MD Anderson Cancer Center located in Houston, Texas.    After Dr . McCutcheons reviewed my MRI he stated that it warrants surgery.  He also stated that even though the tumor maybe a functioning ACTH tumor causing high cortisol, it did not appear as a Cushings tumor .  ( Cushings tumors are 97 percent benign, so if I could have a brain tumor I would want it to be the one more  likely to be benign) but I won’t know what type of tumor I am dealing with until we have the biopsy report.   Dr. McCutcheons recommended a  pituitary resection through transnasal approach.  After surgery I will be treated with high doses of hydrocortisone and  pending my biopsy report will Determine if treatment such as radiation or chemotherapy is needed.  This leaves my family,  friends , and I with a lot of unknown answers until my surgery is completed .  The unknown is one of the worst parts of this process, including being away from my family.  I do feel very confident with my medical team and I know I am in good hands .  It as been very difficult traveling alone and not having my boys with me .  Due to covid I can’t have any visitors during my preop appointments or during my hospital stay.  Face time has been very helpful to keep in contact with my family.  Luckily I have the support of my baby sister Emily and my sweet (hopefully soon to be brother in law Jacob)  They will be staying with me after discharge and flying me home .  Emily also  just graduated from nursing school so what better person to take care of me 😉.  
I recently arrived in Texas April 24 th.  I had registration and covid testing  April 25th.   I just found out my Covid test came back negative,  so let the process begin! 
Tuesday April 27th I have appointments all day with lab work,  anesthesia follow up , and meeting with my surgeon.  Wednesday April 28th is my big surgery day ! They  expect I will be in the ICU for the first couple days and then a few extra days after that .  If all goes well I should be discharged May 2 nd.   I hope to be able to fly home may 3 rd or 4 th. I will try and keep updating my page as best as I can.  Again I appreciate the continued thoughts and prayers .  Love you all! 

Love ,