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Ashley C., Transsphenoidal Pituitary Surgery

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Before Cushing's 2011

Before Cushing’s
2011

I had always been a happy, energetic, and athletic child, constantly laughing and participating in a number of extracurricular activities. I was always a social butterfly with many friends, always sleeping out and having fun. It was not until I reached the middle of my eighth grade year that I started to notice a number of odd changes to my appearance and my personality. This was just the beginning of the two years that I went through of not feeling quite right, but also finding no way of fixing it.

I had always been very thin as a child with long dirty blonde hair, a skinny face, and a bright smile. I played basketball and soccer and also enjoyed running, competing in road races at school and with friends. Around March 2013 of my eighth grade year I started to notice changes in my body. I would go shopping and things would fit differently. I would look in the mirror and no longer had the strong, flat stomach that I had gained through my years and years of athletics. I distinctly remember bringing home my eighth grade spring photo and asking my mom, while sobbing, if that was really what I looked like.

Around the same time, I had trouble running. My normal route around my neighborhood became impossible due to pain in my legs and my feet. Normally I was able to run 3-4 miles without getting tired, and now I could barely run 1 without needing to stop to catch my breath and rub my feet. I continued to succeed in sports, especially in basketball, so I felt confident that maybe it was just a phase. I was around 13 years old, so my parents and I believed that maybe it was just a stage of puberty. My mom was confident that maybe I was just getting ready for a growth spurt and that was why I gained some extra weight around my torso.

With Cushing's Summer, 2014

With Cushing’s
Summer, 2014

Heading into high school in September of 2013, I had grown a little bit less worried regarding my symptoms. I thrived during the fall soccer season and even made the varsity basketball team as a freshman in the winter. I thought that with all this success in sports, nothing could be wrong with my body. In the spring, when I did not play a sport, I started to notice some drastic changes. I had an appetite that simply could not be satisfied. I would eat thousands of calories and not be full. My thirst also increased. Normally I would not even finish one glass of water at dinner, but now I was drinking 3 or 4 glasses at the least. My face continued to get rounder and fuller, I noticed hair growing in on my upper lip, and I would clean giant chunks of hair out of my shower drain every single day. I also had increased acne on my face and back, bruises that would not heal, and a bee sting on my arm that would not get better (we did not know at the time that Cushing’s could affect the healing of insect bites). It was around this time that I also noticed extreme changes in my moods and personality. I was mean, hard to get along with, and always seemed depressed.

In August 2014, heading into my sophomore year, my mom finally talked to me about her concerns and the fact that she wanted to bring me to see a doctor. By this point, at the age of 15, I had not grown an inch, I had gained about 30 pounds, and I had never had my period before. My mom had also been watching a buffalo hump form on my back, and being a nurse, she figured I had some kind of a hormonal issue. My mom also turned to a general surgeon, with a specialty in thyroid, at Beth Israel Deaconess Medical Center. Dr. Mowschenson gave a lot of great advice when my mom showed him pictures of me, and pointed us in the direction of the possibility of Cushing’s.

My pediatrician ordered some blood work done. Initially he believed I had hypothyroidism. Being a nervous kid, I of course researched my symptoms and also believed that a thyroid problem would make sense. When all of my thyroid numbers came back normal, I grew even more withdrawn and depressed. I knew that this was not my body and this was not my personality. I even remember telling my mother that as a little girl I had imagined what I would look like as a teenager, and that this was definitely not it. My pediatrician had been seeing me for many years, and knew that these changes were abnormal. After more blood work, he finally got to the bottom of the issue, concluding that I most likely had a pituitary or hypothalamus issue.

On vacation that same summer of 2014, as I struggled to put on a bathing suit, crying uncontrollably, I noticed striations on my back side along with cellulite all over the backs of my legs. My mom then told me that my cortisol number had come back high, and that we would go to see an endocrinologist as soon as we got home.

I met my doctor at Children’s Hospital Boston, and she knew that I definitely had Cushing’s. Because multiple tests were required, I went through a couple of 24-hour urines, and a couple of midnight salivary tests. My numbers were through the roof, proving that I did have Cushing’s.

Starting school was one of the worst experiences of my life: trying to find clothes, buying things two or three sizes bigger than usual, not wanting to speak to anyone that knew me, being truly embarrassed of myself and going through such a time of self-loathing. It was so traumatizing to be in school at an already tough age, and also having to juggle such a demoralizing issue. I wore only loose sweat pants and sweatshirts, with my thin, rough hair tied tightly in a ponytail, trying to draw the least amount of attention to myself as possible. I went through a number of back issues during the beginning of my sophomore year as well, throwing my back out of place just as soccer season started. My muscles had become so weak with my condition.

In November, 2014 I went through IPSS testing at Massachusetts General Hospital to make sure that my Cushing’s was being caused by a pituitary tumor. Later that month I went through a transsphenoidal surgery, done by Dr. Swearingen. Going into surgery I was a little bit nervous, but more excited to finally move on with my life.

The recovery has been a very difficult part of this whole experience. Being an athlete I was anxious to get back to running and exercising, but it proved to be hard to get going again. At first I could only run up to 15 minutes on the treadmill before I needed to stop. Also eager to get back to basketball, I started playing a month after surgery and struggled immensely. It was hard to get back into shape and I lacked the confidence that I had once had on the court. I also struggled greatly with depression, seeing myself as sick when the recovery process was not as quick as I had suspected it would be. My endocrinologists, Dr. Levitsky and Dr. Ekhlaspour, have been so supportive and encouraging throughout the experience and I could not be more thankful for everything they have done for me.

8 months post op

8 months post op

Now about 8 months since my surgery, I am doing better, but I am not quite back to being myself. I have lost about 25 pounds and have even grown just under an inch, which was a great sign considering my endocrinologists at Mass General did not think that I would ever grow again. I can run 4 miles at a time and try to go to the gym every day. I still struggle to play basketball, which is so hard considering it has been such a big part of my life for so many years. I see a therapist weekly, as I still struggle with some confidence and self-image problems. Being able to talk to someone about myself is really important, and I find that it is so much better to let your feelings out than to keep them bottled up.

Cushing’s is a rare disease in adults, but it is almost nonexistent in kids which is why I felt it was so important to share my experiences. During my ordeal, I struggled to find stories of Cushing’s in children or teens, so I want to be able to provide comfort for other kids who may have to go through the symptoms and the consequences that I have had to. Of course I would not have chosen to have an issue like this one, but being sick has given me a whole new perspective on what is important, and I know that I can use this experience to help others that are in the position that I once was.

If there are any kids, teens, or adults who need help with anything I would be happy to offer assistance.

Member: 152877
Newsletter: Summer, 2015
State: Massachusetts

Sydney K., Transsphenoidal Pituitary Surgery

I was diagnosed at the end of September, 2013. My tumor (pituitary) was removed on October 7th. I was only 18 years old, but my doctors tell me that I’ve had this for a while. My tumor was about the size of a large marble, and it was aggressive (Crookes cell adenoma). I have to have extra MRIs done about every three months. It all started around 9th grade. I started gaining a ton of weight for no apparent reason. Continue Reading

Jessi D., Adrenalectomy

I was diagnosed with Cushing’s syndrome when I was 17-years-old. For 5 years I went to many different doctors and they couldn’t diagnose my symptoms: weight gain, high blood pressure, thin hair, depression and irregular periods. When I was 17 my mother decided to Continue Reading

Mariko B., Parent, Pediatric, Transsphenoidal Pituitary Surgery

Monday, August 12, 1996 was another hot summer day in Los Angeles. We had just returned from Los Angeles Children’s Hospital where my son, Dylan, age 8, had just had another MRI on his head. Because Dylan had to undergo anesthesia, he was feeling very tired. The phone rang. It was Dr. Thomas Roe, head of the endocrinology department, with whom we had spent the morning. He had some bad news. He gently broke the news that Dylan had a tumor on his pituitary gland, a condition called Cushing’s Syndrome Continue Reading

Laurie O., Transsphenoidal Pituitary Surgery

I was diagnosed at the age of 15 by a nurse practitioner who noticed my moon face and hump back. I had lost a lot of hair and wasn’t eating hardly anything. I didn’t want my Mom to find out I wasn’t eating, but I kept gaining weight. For about a year I had trouble sleeping and skipped my period for six months. My first surgery Continue Reading