John Rizzo

First post: Jun 1, 2016 Latest post: May 4, 2021
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.

In 2008, while John was coaching the girls in soccer, he began to have trouble with his voice. When it didn't clear up, he went to see an ENT Physician. After several visits, they found that one of his vocal cords was paralyzed. A brain MRI was reported as negative. As the voice issues continued, he began having difficulty hearing with ringing in his left ear. A physician that specializes in vocal cord paralysis provided injections to the vocal cord with gel which helped strengthen the voice. Along with the constant ringing in his ear, increasing hearing loss and balance issues, John was losing muscle and movement in his left shoulder. We needed answers. We went back to his original ENT and he ordered another MRI. On October 14, 2009, the doctor advised that John had a Glomus Jugulare tumor at the base of his skull.  It was missed by the doctor and the radiologist in 2008 although it  it was very clear in the prior films. We are not sure why they didn't see it.  After several specialists and with the help of a few doctor friends, we found a physician we trusted at Loyola. Dr. Leonetti has been caring for John ever since. The tumor affects multiple cranial nerves in his head causing all of his speech, hearing, and vestibular problems. Dr. Leonetti determined John has 100% loss of hearing in his left ear, the left vocal cord is completely paralyzed and nerves controlling his shoulder muscles are dead. Along with those issues, he has tremendous difficulty swallowing, constant ringing in his ear and balance issues. 


The tumor was located in a precarious position attached to the carotid artery and attempting to remove it was a dangerous proposition. With it remaining stable and not threatening to damage other areas, a decision was made to monitor it. In late 2014 all remained at status quo; no growth or movement and no further damage.


In February 2016 things changed. John started having extreme difficulty with balance and stability walking along with dizzy spells. With frequent pressure headaches and neck pain, a fresh MRI was performed.  While enjoying Disney over spring break with the girls, a call from the doctor directly, brought unfortunate news. We scheduled an appointment for the first day after we arrived home; the directive was that surgery needed to happen as the tumor had developed cancer-like aggressiveness, but is not cancer. 


The tumor had fully wrapped around his carotid artery and progressed into the brain space pushing the brain upward and pressure on the brain stem. There has been no spread to other parts of the body. The surgery will be very long and tedious with a multiple doctor team. It will not be easy. 


We have Faith that God is with us. He is holding John in His care and know that He provides all the strength John will need pull through this.  


Jeremiah 29:11-13 (NIV)

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.

■ Francesca's life verse. Her favorite. We all know this to be true!  
John will be admitted to Loyola University Medical Center in Maywood on June the 13th. He will undergo pre-surgery preparations including a stealth MRI (for better visualization) and an embolization of the tumor’s blood source (helping to minimize blood loss during surgery). After 2 days of healing, the major surgery will take place on June 16. 

 The doctors anticipate an ICU unit observation for several days. His hospital stay will, likely be 10-12 days. After surgery, he will have a feeding tube in his nose as he will, most likely, lose the ability to swallow. If swallowing doesn't return before he is released, a G-tube port will be placed in his stomach for home feeding. He may experience facial weakness and a droop in the left side of his face. He will need therapy to regain his walking ability due to nerve damage. Hopefully, swelling will be limited and the drain in his head will be removed quickly. His voice will be impaired and he will need therapy to bring back and strengthen his voice. This might be the hardest part for John since he loves to talk. 

 Complete removal of the tumor is not likely in avoiding damage to the carotid artery. Some small areas near the brain and around the carotid artery will need radiation after surgery recovery. The road ahead for John will be difficult. 

 Please keep John in your prayers. We know God hears all of us and He listens. Please pray for minimal to no complications. Please pray for precision and wisdom for his medical team. Please pray for healing. Please pray for John to have peace as he faces this. Please pray for me ( Maureen) to have peace as well and for my anxiety to go away. Please pray for our daughters. Pray that He comforts them, removes their fear, and they are at peace during this difficult time for us . Please pray for a speedy recovery and the return of his swallowing, his voice, his balance and the John we all love. We thank you for all of your concern, your prayers and all the assistance in helping our family move through this challenging time. We appreciate all of your support. I will keep updates on this site regularly to make it easier to communicate to so many of our family, friends, and “extended families” at school and in the communities that we are fortunate to be a part of. Please sign up and check for updates. I will be at the hospital with John for the duration. I don't plan to be home.  My friend Connie has so kindly set up a meal train for friends to help my girls and the family when John returns back to our home after surgery.  If you feel moved to help, the link is here.

 Thank you for all your prayers and words of encouragement.

Maureen , John, Gianna, Francesca and Sophia Rizzo

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