The story of Teri
Battle with a Brain Tumor / Cushing’s Disease.
My name is Teri Hudson I am one year post op / in recovery from Endoscopic Trans sphenoidal Resection of Pituitary Adenoma / Brain surgery to remove a benign tumor on my pituitary gland causing me to have Cushing’s Disease.
Cushing’s disease is a serious condition of an excess of the steroid hormone cortisol in the blood level caused by a pituitary tumor secreting adrenocorticotropic hormone (ACTH). ACTH is a hormone produced by the normal pituitary gland. ACTH stimulates the adrenal glands (located on top of the kidneys) to produce cortisol, commonly referred to as the stress hormone.
Here’s my story…
My name is Teri and I live in Alabama and my long journey with Cushing’s began eleven years ago before I knew I had the disease. I was a 39-year-old female, I was living life in the fast lane. I was a busy wife, a mother of three active teenager’s and a full-time employee. I was generally healthy except for a mild case of hypoglycemia, extremely low blood pressure and seasonal allergies. I only weighted 130 and was constantly on the go with my kids being involved in school activities, sports and church activities. But one Saturday in 2005 it seemed everything changed for me. While out running errands, I began experiencing some tingling in the left side of my face and left arm. I became very tired. I brushed off the feelings as just being run down and tired from a busy week and a day of chores and errands that had been done. I went home and rested but when I awoke I had no feeling in the left side of my face or my left arm and my left 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 emergency room to seek help and given blood thinners and told I was possibly having a stroke. I was admitted to the hospital for a series of test. After the test were completed I was diagnosed with having Bells Paulse (A mild stroke effecting the face) and Corporal Tunnel (damage of nerves in the wrist). Physical Therapy was ordered for me to repair the damage on my face and strengthen my arm. I was also given steroids as treatment. I was in hopes that this was just a onetime thing but little did I know over the next few years life as I knew it would be turned upside down.
After the first episode, life went back to normal and I seem to feel better neurologically but began gaining weight and began having digestive and severe stomach problems. In 2007 Hospital admittance was required several times and after several tests I was diagnosed with Crones disease. This was treated with more steroids, special medication and strict diet. I began feeling better after the treatments but even on a strict special diet I was still gaining weight. I just could not understand. This matter made me very depressed. I discussed it with my gynecologist during an annual visit and he explained that the steroids use could have caused me to gain the weight and I would just have to work extra hard with the diet and exercise to get the extra weight off. He also ordered a series of test on my hormones and thyroid. They all came back normal. But he prescribed something for depression to help me get over this depression state. I had never experienced depression before.
My next episode happened in 2008 a year later when I developed kidney stones. The stones were very large and had to be surgically removed. And once again I was given steroids for treatment. After recovering from that I was scheduled to have a colonoscopy for a check on the condition of my intestines from the Crones disease. Much to the physicians surprise my intestines and stomach ulcers had healed. I was told I was no longer considered a Crones patient and perhaps I was misdiagnosed when I was given this diagnosis or the treatments healed me completely. Not sure why all my symptoms went away and I no longer had stomach problems but this was great news. I thought finally all my hard work of trying to eat healthy had gotten some positive results.
In 2009, my year began with a severe case of strep throat that after treatment with antibiotic turned into abscesses on my tonsils. The abscesses had to be lanced. After the treatment, my tonsils again formed and abscessed and the procedure had to be repeated. The was a very painful process. I was given pain medication and more steroids for treatment.
In the spring of 2009 I had another neurological episode with tingling in the left side of my face and my left arm, experienced confusion and slurred speech. I was admitted to the hospital and after several tests were ran I was diagnosed with having a mild TIA, high blood pressure, high cholesterol and considered obese. I was prescribed high blood pressure and cholesterol medication. I had been under and a lot of stress during this time when the recession occurred and the building industry folded. I had lost my job when the company I had been employed with for 20 years closed. Doctors told me that stress could have been the cause of my latest episode.
was referred to a Specialty Neurological Clinic for further testing. The physician that saw was very concerned about my blood pressure that was still spiking after being on medication and the swelling in my face. He changed my blood pressure medication and after reviewing my test results diagnosed me with having a Lacunar stroke. He said should diet and exercise and take a Bayer 325 aspirin daily.
repeated this same process in the Fall of 2010. Numbness in the left side of the face and arm. went to the hospital for treatment and a series of test. More Cat Scans, MRI, MRA, Ultra Sound of the arteries, heart test and lab work. All the test came back negative. After several days of observation, was diagnosed with having another TIA. was once again referred to the neurological specialist. The physician that I was a patient of the prior year who had diagnosed me with having a Lacunar Stroke had left the practice. The physician was referred to was new to the practice and basically told me all my test were negative and I just needed to lose weight and quit babying myself if I truly wanted to get better. I had been through another life changing event when my oldest son moved away to college and I was told that possible added stress could have brought on my last episode and I just had to learn to deal with life’s events if I wanted to stop having these neurological episodes.
This was very frustrating me and my family. As I consider myself a very strong and determined person. After all I had been through, I would attempt to try and get up and go every day. Despite my illness I worked full time, took care of household chores daily and attended every event possible my children were in. 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. Just always feeling tired I returned to my local neurologist in 2011 and he began to run more test. I was tested for lime disease, Lupus, MS, Myasthenia Gravis, Parkinson, and many other tests. After all test came back normal I just accepted that my illness was undetermined at this point or maybe it was just all in my mind. Perhaps the one doctor was right maybe I should not worry so much and just try harder. The harder I tried to be strong the more run down I became. Several months after my round of negative neurological testing I began to have a lot of dizzy spells and fell often. I fell once and broke my ankle and it was placed in a cast and another time fell breaking my wrist. Both times I was given more steroids for treatment. None of these dizzy spells could be explained.
My next attack as I had begun to call them, and new symptom came in 2012 when I was at work and my co-workers said I fell out of my chair and began having a seizure and stroke like symptoms. I did not have any warning signs before this happened and felt fine before this episode. I was taken by ambulance 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 tested neurologically. I left the Mayo Clinic with a diagnosis of Complicated Migraines. I did not understand this diagnosis as I have never had a headache as a symptom. It was explained to me that I could have Complicated Migraines and not ever feel the pain of a headache. I was prescribed the drug Keppra and Vimpat for the migraines and seizures. At this point I was willing to try anything. The illness of being labeled as a seizures patient causes more problems for a busy mom and wife. I was now unable to drive for months after having a seizure. This was a hardship on my family having to take me to and from work and other errands. And not being able to be alone. Several more seizures came after that and a few that required hospital admittance for observation and from injuries received from falling while having a seizure. The seizures seem to take a lot out of me and would require several weeks to recover. During one of my hospital admittance after a seizure I was referred to a new neurologist specialist. This neurologist sent me for a sleep lab test and it was determined that I had Sleep Apnea and this was possibly causing the seizures. I began using a sleep machine and more seizure medication was added.
Despite the sleep machine and other medications my seizures and unexplained stroke like symptoms continued periodically for the next 4 years. During this time, I was referred to a Stroke Specialist in Louisiana to review my medical records. He confirmed that a few signs of older strokes were showing on several of my scans but felt that I was having Complicated Migraines and had Sleep Apnea and all should be manageable with medication and lots of additional rest. He felt that when I got extremely tired that I could possibly have one of these episodes. He also advised me about my weight. I tried to explain that I honestly had tried everything to lose weight but was just not successful. He stated that possibly the seizure medication and use of steroids could cause you to gain weight.
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 several weeks for me to recover. In May of that year I was hospitalized again with kidney stones. After my follow, up visit with my primary care doctor after my hospitalization she was very concerned about my blood pressure and my weight. I seem to have so much swelling in my face and stomach. I was referred to the gastroenterologist for testing. All test ruled out anything gastro related. She added additional blood pressure medication and put me on a very strict high protein diet. I was required to keep a food journal. I began losing weight rapidity, however I began having more symptoms of confusion, dizziness, chest pains and was falling a lot. One afternoon while leaving work I was walking to my car and my left leg went numb and I fell injuring my leg and wrist. I went my primary physician and she was very concerned that my blood pressure was not under control and I was on 4 different medications. She added a 5th medication to control the blood pressure and ask me to monitor my pressure for several days. She was hoping that my blood pressure was elevated due to the pain I was in when I injured my leg. Extensive lab test was ordered. I was scheduled to have an MRI on my leg in several days after the swelling went down. After three days, my blood pressure did not go down and I began having stroke like symptoms, severe chest pains and mini seizures. I was rushed to the hospital and was told I had a possible blood clot. A TKN was done and I was admitted to ICU. I was treated for a stroke, extremely low potassium, and diabetes. The potassium loss and diabetes were new symptoms to me. I was referred to a heart specialist. A TEE was done on me to check for a heart leakage and several other tests were done. All heart test came back normal. At this point I was on 17 types of medication daily. 2 seizures medications, 5 high blood pressure meds, high cholesterol, potassium pill, 2 diabetic medications, hormonal medication, anxiety medication, blood thinners, vitamin D, prescription antacid and fluid pills. My vison was changing daily, my hair was falling out, I was having memory loss and frequent panic attacks with severe chest pains. I had a lot of left side 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 took naps several times a day just to function. I was unable to return to work with these side effects, confusion, joint pain and total exhaustion. I felt like I was just crumbling and falling apart. I was a complete mess but my daughter was engaged to be married and I set my goal high to be strong and prepare for the wedding. I had always been a take control person and plan things but I was physically unable to do all the preparations for the wedding. I planned and all my friends and family rallied around me and helped me with the wedding festivities. My daily goal was to make it to the wedding. I honestly felt that this was the only thing keeping me going. It was a struggle and I had a few setbacks but I did make it to the wedding.
A few weeks after the wedding event I stopped the high protein diet and began a regular low carb diabetic diet as recommended by my nutritionist. She felt I needed a more balanced diet. I immediately began gaining weight again and was still having extreme fatigue. I was then referred to an endocrinologist, for my diabetes. At this point I was so tired of being referred to different doctors and was hopeless as I went to visit the next one. The endocrinologist I as referred to was new to the area and has just opened-up a specialty clinic. I was one of her first patients. After she reviewed my case she seemed very interesting in helping me. She explained to me that she was determined to figure my case out. She seemed to take a special interest in me. She began running a series of test immediately that lasted for several weeks checking on me often. During this testing period, I had another stroke and a few weeks later a TIA. My blood pressure was not under control even with all the medication. I was honestly at my breaking point and was honestly ready to give up. I was so very weak, could barely walk, my skin was very thin and I appeared so swollen all over, I had severe joint pain. I was so concerned with all the medication I was taking that did not appear to be helping. There were several days that I had to walk with a cane and some days that I had to be pushed in a wheelchair. I was convinced that I was dwindling away and was dying. I was preparing myself mentally and spiritually for this. These were some very bad days.
It was a finally a good day. I was in the hospital in November of 2016, I had been admitted for another TIA when the Endocrinologist doctor called and said she had found my problem. I had a tumor on my pituitary gland. She said she felt I had Cushing’s Disease. Cushing’s Disease is where a tumor has formed on the pituitary gland and causes over production of cortisone in the body. My family questioned if this was correct because while grasping at straws in the past when I was so ill my husband had researched all my symptoms and Cushing’s Disease came up. I had every symptom. Weight gain in the stomach area, moon face, buffalo hump on the back, high blood pressure, skinny legs and arms, bruise easily, diabetes, high cholesterol, facial hair, vision loss and excessive tiredness. We talked to the primary doctor about this but was told that my lab work would have showed that and that had been ruled out. The endocrinologist explained that she had done extensive lab test, salvia test and a 24-hour urine test to determine this. The only thing she needed was to order a special MRI to confirm the tumor on the Pituitary Gland to have a correct diagnosis finally. The MRI test confirmed that I had a small tumor on my gland. She explained that the tumor could have possibly formed due to the use of too many steroids in the past but was unsure. She also explained that this was probably the cause of all my illnesses and all my symptoms should go away with treatment and removal of the tumor. I ask why I had gotten so sick and had so many symptoms in the last few months and she explained something in my system had put the tumor into overdrive producing even more cortisol. I feel that perhaps it was the high protein diet I was on prior to her finding the tumor. Whatever it was I was just thankful I had a correct diagnosis. I was immediately referred to a Neuro Surgeon at a larger hospital as an urgent patient and within three weeks after more test were done I was scheduled for surgery to remove the tumor. Wow I finally had an answer but was very afraid. I was about to have brain surgery. But I prepared myself for this and I realized that I had prayed for answers and a cure and I had received that so I much trust that everything will be ok. The surgery was performed in January 2017. I received an Endoscopic Trans sphenoidal Resection of Pituitary Adenoma. When I was admitted to the hospital the lab work indicated that my cortisol level was a 29. Normal level is a 9. 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 and I was cured. I can’t describe how it felt to me and my family to hear those words you are cured. The doctor explained that she has cured me by removing the tumor but I had to understand that the recovery process was a long and difficult road. Recovery time is not instant and in most average cases it takes about 9-12 long months. She told me you did not get sick overnight and you will not get well overnight. It was not as simple as removing the tumor and you will get better it will just take time. In Cushing cases, the tumor had controlled the pituitary gland for so long that the gland 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 still cortisol dependent and had to take the prescribed dosages for several months and then weaned 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 very sad days, dark depression days and very bright days. The joint pain was unbearable at times and the fatigue problems got worse. Somedays it was a challenge just to take a shower and get dressed. 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. But over a course of 9-12 months I slowly began to overcome all of this and became myself again. The weight gain and puffiness from the Cushing’s Disease went away, the fatigue and depression became less each day, my hair loss stopped and began re-growing and my overall skin appearance looked better and I felt better that I had in a long time. One by one the medications were stopped as symptoms went away.
I had 7 months of intense physical therapy to rebuild my muscle strength from damaged the Cushing’s Disease had caused and from a few side effects from the stroke. Therapy was very difficult but also very helpful in the recovery process.
At my last follow up visit with my Endocrinologist, she was amazed at my results and was pleased that lab work showed signs that my pituitary gland had begun to work again. She advised me that I had a few more step downs to be taken off all medications but she was discharging me as a seizure patient, stroke patient, diabetic patient, release from potassium loss, Vitamin D deficiency, hypertension and Cushing’s Disease. 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 all the symptoms. I realize that there is a chance that this terrible disease could come back but I am staying positive and looking at the 80% chance that it will not.
This long journey with Cushing’s Disease has been by far the worst experience in my life. With all the ups and downs that I have been through. The numerous symptoms and side effects that Cushing’s Disease caused was very tough on me. The seizures and strokes were the scariest. When you lose control of your body and don’t understand what is happening to you it can be very frightening. The constant joint pain allover as if you feel you have been hit by a train was a daily struggle. The potassium loss gave me severe chest pains and dizziness. Along with the high blood pressure and diabetic state I always had what seemed like foggy headiness and confusion. The constant weight gain when I was dieting and exercising regularly was very frustrating. The fact that I just never felt well, had trouble walking, memory loss and not able to do daily task was discouraging. As I look back and think about all the hospital stays, medical test that I went through, all the doctors I have been referred to, all the medications I have tried, all the missed days from work and finally the day that came when I had to realize I was no longer able to work, the financial cost and the emotional strain this has put on my family is all so overwhelming to me. Cushing’s Disease has put me through so much and has taken so much away from me. Most of my symptoms did go away, but I still have a few noticeable side effects from the stoke; memory loss, my attention span is shorter and I my left side is a lot weaker. But I am so thankful that these few side effects are so minor. I will also say after having gone through all of this as hard as it is to say I am thankful I went through every one of those trying and difficult times. First it has made my faith stronger. I have always been a believer but this experience has helped me grow closer to the Lord. Daily I would pray and read scriptures. On difficult day’s it would give me a peace and comfort and most of all hope. It seemed everywhere I went someone had added me to their prayer list or told me they were praying for me. I would receive encouraging cards, text and phone calls that reassured me that the Lord was with me. This was amazing to me that people I did not even know were praying for me. It has made me such a stronger person and aware of what I can overcome. I have realized that material things don’t mean as much as they use too before my illness and that perhaps I had my priorities out of order for a while. I guess you could say I got knocked down to my knees and things looked differently now. I am not sure why I had to go through all of this but I am glad I did. Now I do not get upset over small petty things and I learned to step back and look at the bigger picture in situations. I have learned that you must stay positive and look for the good things. A wise friend once told me in all situations to “Choose Joy” so I must say that I have honestly tried to choose joy daily and on dark days during the recovery process this was not easy. But I have found it is so much better that focusing on the negative in all situations. I honestly just enjoy life more.
As encouragement, I remind myself that a year ago, I was on 17 medications and now I only take 3 and that I am being weaned from them, so that itself is encouraging. Recently my daughter took a current photo and compared it to a photo from last year before the surgery and the difference is amazing. I did not look like the same person in the picture. So that is a great visual reminder to myself of what mountains I have climbed and to stay positive for better days ahead.
Also, along this journey I found the values of true friendship and company and have met some great people in the medical field and other areas along the way. I have shared my story with several and to my knowledge two people that had similar symptoms were tested for Cushing’s and tested positive. That was definitely a WOW moment. This is such a rare disease but sometimes I look at diabetic people and others who have the symptoms I had and I wonder could they possibly have Cushing Disease? I wish that this disease was made more aware of. I wish people were made aware of about excessive use of steroids for treatment. I certainly will strive to make it more knowledgeable. Anyone who is willing to listen to my story I will be glad to share. I proudly show my pictures of then and now and my medication list of then and now as a testimony.
I want to thank the Endocrinologist that was determined to help me and the Neuro Surgeon that cured me. But also, I would like to thank my other doctors and medical staff that tested and treated me for the symptoms that I had to the best of their ability. Some have been so friendly and helpful others have not been by writing me off but I want to thank them all.
Lastly and most importantly I would like to thank my entire family for all their love, support and encouragement daily. They have always been there for me with no questions asked. And a special BIG thank you to my wonderful husband, he without a shadow of a doubt has honored his vows in sickness and in health. He has been there every step of the way with me and I will say there were some very bad days along the way, but I know I could not have fought this battle without him by my side. He is truly by best friend and number one supporter and I love him dearly. I am the one that had Cushing’s Disease but it has truly effected all of us.
It’s the beginning of 2018 I am almost fully recovered. I am not sure what to do with my life now. I have not been well in so long its unfamiliar. I can now drive myself and be left alone. It’s like I have my freedom back. Perhaps I will return to work or maybe do some volunteer in upcoming days. But one thing I do know is that I have been cured and given a second chance at life. I thank the Lord for it daily and I choose to enjoy it spending more time with family and friends and helping others. Who knows what tomorrow holds.
I would like to say to anyone who is battling any kind of illness cling to hope, faith and love and, always stay positive that a cure or diagnoses may right around the corner.
This is the bible verse that I read daily for strength – Psalm 103:1-5 ~ “Praise the Lord, my soul; all my inmost being, praise his holy name. Praise the Lord my soul, and forget not all his benefits, who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagles.”