Heidi’s Story

Site created on April 25, 2021

     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 ,
Heidi 







Newest Update

9 month post op update

Journal entry by Heidi Worpenberg —

 Below is an update on my post op journey since many people have been curious of my health situation.  

The diagnosis of my brain tumor took over a year with Constant  lab test, scans , doctor visits etc before I was cleared for surgery 4/28/21.   Now 9 months post op I currently am in the same boat with the long process of figuring out all my new health issues.  I was so excited to have my tumor removed and start feeling better, but unfortunately the doctors were right when they told me I could deal with a lot of other health issues post op. Thankfully these issues can be treated with medication unlike the tumor. I am still so thankful to have been able to fly out of state to be in the hands of some of the best neurologist. The process has just been exhausting to say the least. 

Its very common after anyone has this surgery to need post op hormone replacement medication, but they hope by 6 months you will start producing on your own again.  My tumor was invasive causing my pituitary to now be damaged. I unfortunately am still deficient in all my hormones and my doctors stated I could need life long replacement medication. I wish i could feel like I did before the tumor but I’m trying to stay positive and figure out this new life with a chronic disease. I am currently working with some great local doctors that are figuring out the best treatment plan to help with all the side effects that come along with now being (panhypopituitarism)deficient in hormones the pituitary produces. 

I recently had a post op MRI of the brain. The radiologist stated they saw a small residual tumor and a mass in the sphenoid. After having my surgeons review the MRI they did not agree with the report, stating no tumor is seen and the mass in sphenoid is scar tissue from surgery. So I will have a follow up MRI in a few months to make sure they don’t see any changes. 🙏🏻

I am told I have a 50-70 percent chance of a recurrence with my tumor, but I am hopeful I will stay in remission.  I also have faith I will start feeling better once I am on the right replacement treatments.  I am so thankfully for the continued thoughts and prayers from everyone.
This past year has been some of the most difficult things I have gone through but also some of the best.  Scott and I were able to have a beautiful wedding and our family moved into a new home! We are excited to start new adventures and have a year with positive healing and health.  I feel so lucky to have my boys by my side and the best husband who has been the best caregiver I could ask for. We are so appreciative of the support our family and friends have shown us.  We can’t thank you all enough! ❤️

love,
Heidi

* I also would like to rally all my prayer warriors!!!

Two of my friends, Elisha and Jen have recently been diagnosed with cancer.  I please ask for continued thoughts and prayers while they both start their journey with chemo and radiation this month.  ❤️‍🩹🙏🏻Thank you! 

Read More of the journal titled "9 month post op update"
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