Battle with a Brain Tumor / Cushing’s Disease
My name is Teri Hudson. I am one-year postop and in recovery from endoscopic transsphenoidal resection of pituitary adenoma. Here’s my story…
My long journey with Cushing’s began almost 13 years ago before I knew I had the disease. I was a 39-year-old female, living life in the fast lane. I was a wife, a mother of 3 teenagers, and worked full time. I was generally healthy. I only weighed 130 lbs and was constantly on the go, being involved in school, sports, and church activities. But one Saturday in 2005, it seemed everything changed. I began experiencing some tingling in the left side of my face and arm. I became very tired. I brushed off the feelings as just being tired from a busy week and a day of running errands. I went home to rest, but when I awoke, I had no feeling in the left side of my face or my arm, and my leg was heavy. My speech was slurred, and I was very confused. My husband knew immediately that something was wrong. I was taken to the hospital to seek help and given blood thinners and told I was possibly having a stroke. I was admitted for a series of tests; after the tests were completed, I was diagnosed with having Bell’s Palsy (a mild stroke affecting the face) and carpal tunnel syndrome (damage of nerves in the wrist.) Physical therapy was ordered to repair the damaged muscles in my face and strengthen my arm. I was also given steroids as part of the treatment. I was in hopes that this was just a one-time thing, but little did I know, over the next few years, life as I knew it would be turned upside down.
After the first neurological episode, my health seemed to decline for the next 12 years. I had kidneys stones several times that had to be surgically removed, developed Crohn’s Disease, fell often and had several broken bones. I had several cases of strep throat that turned into abscesses that had to be lanced. In most of these cases I was given steroids as part of my treatments. After these treatments, I started gaining weight and was unsuccessful when trying to lose the weight. I asked several doctors and they explained that sometimes the extra weight could be from the steroid use and I would just have to work extra hard with diet and exercise.
Despite the health problems, I did not have any other neurological episodes until 2009. I began having tingling in the left side of my face and my arm, experienced confusion and slurred speech. I was admitted to the hospital, and after several tests I was diagnosed with having a mild transient ischemic attack, or TIA (“mini stroke”), high blood pressure, high cholesterol, and was considered obese at 160 lbs. I was prescribed blood pressure and cholesterol medication. I had been under a lot of stress during this time. Doctors told me that stress could have possibly been the cause of my latest episode but was unsure, so I was referred to a specialty Neurological Clinic for further testing. The physician I saw was very concerned about the swelling in my face and my blood pressure that was still spiking. He changed my blood pressure medication, and after reviewing my test results, diagnosed me with having a lacunar (“common”) stroke. He said I should diet and exercise and take an aspirin daily. I followed his recommendations, but the same thing happened again in the Fall of 2010 with numbness in the left side of my face and arm. More CT scans, MRI, MRA, ultrasound of the arteries, heart tests, and lab work. All the tests came back negative. After several days of observation, I was diagnosed with having another TIA. I was once again referred to the neurological specialist. My previous physician had left the practice, and the physician that replaced him told me I just needed to lose weight and quit babying myself because my tests were negative. I consider myself a strong and determined person, so her comment that I would need to just learn how to better deal with my stress was frustrating for me and my family. Despite my illness, I worked full-time, took care of household chores daily, and attended every event possible. My family would have to force me to rest in fear I would get sick again. I was so determined not to be sick, but I knew deep down inside something was very wrong.
My next “attack,” as I had begun to call them, and a new symptom came in 2012 when I fell out of my chair at work and began having a seizure and stroke-like symptoms. I did not have any warning signs before this happened. I was taken to the hospital where I was admitted for several days and was told I had another TIA and multiple seizures. The seizures were unexplained, as it did not show any results on the EEG test. I was referred by my local neurologist to the Mayo Clinic for extensive testing. I spent a week being tested and left with a diagnosis of complicated migraines. I didn’t understand this diagnosis, as I had never had a headache as a symptom. It was explained to me that I could have a complicated migraine and not feel the pain of a headache. I was prescribed migraine and seizure medications.
At this point, I was willing to try anything because the label of “seizure patient” restricted my life to the point of adding stress to family members who had to do things for and with me for safety. I had several hospital admittances after seizures, and at one point I was referred to a sleep lab and a new diagnosis: sleep apnea. They thought my seizures might stop once I began using a CPAP and increased my medicine dose, but they continued periodically for four years. I was referred to a stroke specialist in Louisiana for a medical record review, and he concurred on my migraine and apnea diagnoses after confirming that signs of older strokes were visible on my scans. He suggested more rest and that I lose weight.
2016 was my worst year. It seemed that I stayed sick the entire year. In February, I had several seizures and was hospitalized, and it took weeks for me to recover. In May of that year, I was hospitalized again with kidney stones. At my follow-up visit with my primary care doctor after my hospitalization, she was very concerned about my blood pressure and my weight. I seemed to have so much swelling in my face and stomach. I was referred to the gastroenterologist for testing; all tests ruled out anything gastro-related. She added additional blood pressure medication and put me on a high protein diet. I began losing weight rapidity; however, I began having more symptoms of confusion, dizziness, chest pains, and was falling a lot.
My physician added a fifth blood pressure medicine when it did not seem to be controlled on the four I was already taking. At this point I was on 17 different medications daily. My health was declining and I spent time in ICU and had every scan and test in the book. Heart tests came back normal but seizures, high blood pressure, and stroke-like afflictions continued. I was newly diagnosed with low potassium and diabetes. My vison was changing daily, my hair was falling out, I was having memory loss and frequent panic attacks, chest pains, and tremors. I had a lot of left-sided weakness from the recent stroke, difficulty walking, and trouble swallowing. I began physical therapy for these side effects, but I was so physically weak that I was unable to hold up. I was unable to return to work as well. I felt like I was crumbling and falling apart.
A nutritionist reviewed my case and recommended a low carb diabetic diet. I immediately began gaining weight again and was still fatigued. I was then referred to an endocrinologist for my diabetes. My confidence was low after years of incomplete answers, but this new doctor took a real interest in my case. In November 2016 I was hospitalized after two more strokes, and while in hospital she called and said she thought she’d found my problem: I had a tumor on my pituitary gland. She said she felt I had Cushing’s Disease, which was ironic because much earlier while trying to figure out what was happening with my body, my husband had done some research and came across Cushing’s. It seemed like I had every symptom, but at the time my doctor said my lab work would have shown it and so ruled it out.
My new endocrinologist explained that she had done enough repeat testing to be sure and all we had left to do was an MRI to confirm the pituitary source, which it did. She gave me hope that my symptoms had been caused by this and should end once I had surgery. We speculated that my health had gotten so bad so quickly recently because something had put the tumor into overdrive producing high levels of cortisol. I was so thankful I had a correct diagnosis. I was immediately referred to a neurosurgeon at a larger hospital as an urgent patient and within three weeks I was scheduled for surgery to remove the tumor.
Wow, I finally had an answer. The surgery was performed in January 2017. I received an endoscopic transsphenoidal resection of pituitary adenoma. When I was admitted to the hospital, the lab work indicated that my cortisol level was a 29. The day after surgery, my lab work indicated that my level was a 7. This was a great sign that the surgery was a success. I can’t describe how it felt to me and my family to hear that. The doctor explained that she had removed the tumor, but I had to understand that the recovery process was a long and difficult road. Recovery is not instant! She told me I did not get sick overnight and I will not get well overnight. The tumor had controlled the pituitary gland for so long that it was no longer working. It was in sleep mode, and it would take several months to wake up and function on its own. During this time I was cortisol-dependent and had to take the prescribed dosages for several months, then wean off the medication slowly. This was a very trying time. As the recovery process began, my body had to go through a lot of emotional and physical changes. My hormone levels were up and down. I would have sad dark depression days…..but also some very bright days. The joint pain was unbearable at times, and the fatigue problems got worse. Every time my steroid dosage would be adjusted I would go into withdrawals; nausea, vomiting, joint pain, and severe depressions that would last for days.
Over the next year I slowly became myself again. The weight gain and puffiness went away, the fatigue and depression became less each day, my hair began re-growing, and my overall skin appearance looked better. I felt better than I had in a long time. One by one, the medications were stopped as symptoms went away. I had seven months of physical therapy to rebuild my muscle strength from the damage the Cushing’s had caused and a few side effects from the strokes. Therapy was very difficult, but very helpful in the recovery process.
At my last follow-up visit with my endocrinologist, she was amazed at my results and the fact that I was no longer a seizure, stroke, and diabetes patient, that my potassium and Vitamin D levels were normal, and that the hypertension was gone. She did, however, make me aware that I will need follow-up visits to have MRI and lab work done because there is a 20% chance that the tumor could return, along with the symptoms. I realize that there is a chance that this terrible disease could return, but I am staying positive and looking at the 80% chance that it will not.
This long journey with Cushing’s has been the worst experience in my life; the symptoms and side effects of Cushing’s were very tough on me. The seizures and strokes, potassium loss, chest pains and dizziness, high blood pressure and diabetes, and the constant joint pain all over, as if you feel you have been hit by a train, was a daily struggle. I always had a “foggy head” and confusion. The weight gain when I was dieting and exercising regularly was frustrating. The fact that I just never felt well, had trouble walking, memory loss, and not able to do daily tasks was discouraging. As I look back and realize all that Cushing’s has put me through and everything it has taken away from me, I am overwhelmed. All my symptoms did go away, but I still have a few side effects from the strokes; thankfully these are minor. I will also say after having gone through all of this that my faith is stronger and I realize what I can overcome. I am thankful for this clarity. I certainly have more respect for people with disabilities and illnesses.
As encouragement, I remind myself that a year ago, I was on 17 medications and now I only take three and I am being weaned from them. I wish that this disease was easier to diagnose. I wish people were made aware of the dangers of excessive use of steroids for treatment. I certainly will strive to educate those around me and perhaps my story could help someone get diagnosed.
I am thankful for the endocrinologist who finally diagnosed me, but also for the doctors along the way who did the best they could to treat my severe symptoms. I am most thankful for my entire family for all their love, support, and encouragement daily, especially my husband. I am the one that had Cushing’s Disease, but it has truly affected all of us.
It’s the beginning of 2018. I am about 90% recovered. It’s like I have my freedom back. I would like to say to anyone who is battling any kind of illness, cling to hope, faith, love, and always stay positive that a cure or diagnosis may be right around the corner.