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Heidi’s New Brain Recovery

Story

Hello friends and family! We've started this page to keep close friends and family informed as to the progress and needs that might arise during Heidi's recovery from brain surgery. She will be out of work for 9-12 months (minimum), so for the sake of her sanity and mental health, having a calendar for visits and someone willing to take her for walks will be most meaningful during this process and GREATLY appreciated. How it started: At the end of October of 2024, Heidi had increasing symptoms of what would align with long term effects from a several TBIs (one notable one in 2017). A routine scan to rule out some things from those brain injuries many years ago was prescribed by her neurologist from the Kutcher Clinic for Sports Neurology. That scan revealed the hyper intensities that were to be expected, but also another spot that was not so expected. She was told to go to a neurosurgeon specialist for this and found that she had a tumor that was out of their scope of treatment. After nearly three months of trying to get an appointment, she finally at least got in to see a doctor that was able to prescribe another scan. This scan revealed the tumor had grown and doubled in size and put her at risk for blindness. It then took another few months to get in with a specialist (after a very NOT good experience with a doctor at a different hospital) at UPenn. It was a miracle that she happened to be able to get in with the country's leading expert in this type of adenoma. After some lab work and eventually another scan, it was determined that not only was the tumor still growing toward the optic chiasm and carotid artery, but that in conjunction with labs confirmed she had Cushing's Disease. Unlike Cushing's syndrome, the only possible cure is removal of the tumor. After it's removed, assuming the ENTIRE thing is removed, it generally takes anywhere from 9-12 months to start to recover from the disease. The surgery is scheduled for January 26th at UPenn in Philadelphia. She will be in the hospital for the first few days, but then recovering at her house with 24/7 care for the next few weeks and will be able to walk shortly after coming home. This is going to be a long road to recovery and the support of friends and family is going to be crucial. Check out the calendar feature to see when visits would be appreciated! We will also keep things up to date such as what the dietary needs would be moving forward. We'll also update any of the wishlists if the need arises for a little extra help. Thank you so much in advance for all the support... Lord knows asking for help isn't easy. So grateful for you all... <3


Special Notes

Diet as prescribed by doctors has been higher protein and lots of fruits and veggies. Lower fat and high fiber are recommended for this recovery for both muscular and hormonal repair from the damages of the Cushing's.

Care Calendar