- CASE FILE
31 with severe, worsening & unexplained osteoporosis, 6 spontaneous vertebral fractures, severe pain, weight loss, insomnia, depression
ABOUT THIS CASE FILE
My name is Stephanie Maltese. I am currently thirty-one years old. I have been through more scans, bloodwork and surgeries over the past two years than most people endure throughout a lifetime; Yet my worsening medical issues remain a mystery. My everyday life is left living in pain where each day melts into the next and every movement has to be made with extreme caution. This becomes impossible both mentally and physically as I embarked on this nightmare just two months after my daughter was born. The happiest time of my life was overshadowed by doctors’ appointments where all recognized physicians were left stumped and the most common phrase was, “This is so unusual, I’m sorry but I can’t help you”. I was advised against holding my new baby due to the high risk of breaking more bones and there would be no way to fix them because I am too brittle. Most recently, I have even been abandoned by my primary care physician of twenty years due to his inability to help me. Please read my story and consider accepting my case as I have been left with no other option or doctor willing or able to give me any hope.
September 2017 was the ultimate pivotal time of my life where my happiest days of being a new mom turned into a nightmare of not being able to independently care for my daughter. I was getting ready to return to work as a critical care registered nurse and had back pain that I decided should be checked out before. My orthopedist said it was most likely due to the c-section and prescribed physical therapy. It was at physical therapy where I realized how bad my back pain truly was. I was unable to perform any of the exercises period. My orthopedist then prescribed an MRI of both my thoracic and lumbar spine and it was all downhill from there. I received a call the next day from my doctor and his exact words and were, “I can’t explain your MRI. You cannot continue physical therapy and you need to see a spine surgeon right away”.
My appointment with the spine surgeon was highly nerve wrecking in that I did not know what to expect nor have I ever received a report from another doctor this way. He right away pulled up my scan and said that I have six very visible fractures from T5-L1 and he also cannot explain why. My mind was racing. Six fractures? How? I never fell!? I haven't lifted anything beyond my daughter. I left there with needing a custom brace made and bone density prescription. The brace went from by clavicle all the way down my spine covering the front and back of my body. It did not allow me to even get close to my daughter and caused more pain and even new pain in other areas. I then went for my bone density. The results again were devastating. I was told immediately without leaving the office that not only did I have osteoporosis, I had very severe osteoporosis. After my surgeon got those results, I was told to not wear the brace because it could cause more fractures, there would be no chance of me ever returning to work and that he definitely does not want me holding my baby. He had me see an endocrinologist right away and my journey of testing began.
The endocrinologist was also blown away by my bone density and all of my vertebral fractures. She estimated my bones to be comparable to people in their 90’s and older. I had multiple blood tests done from the obvious causes to genetic diseases. When all came back negative, I went for a gastrointestinal consult and had to have an abdominal and pelvic MRI with contrast. That showed a possible mass and I then had to undergo a colonoscopy and upper endoscopy where biopsies were taken. That all again came back negative. I was advised to have an oncology work up and that was how I spent my 30th birthday. Those cancers came back negative and I then received a call from my endocrinologist saying that they had to drop me as a patient, and I should try to get into a study because they don’t know of any other doctor who could help me. In the meantime, I had gotten other opinions from rheumatologists and they also were stumped.
My hope was somewhat regained when I got accepted into a study at Columbia University for possible pregnancy induced osteoporosis. There I had scans and blood work done every 6 months which showed worsening osteoporosis without any finding cause. I had undergone a bone biopsy which confirmed the bone density as being as severe as those results were. After a year and a half in the study I was also dropped due to not having the pregnancy induced osteoporosis. They knew this because those women would get somewhat better and I actually got worse and continued that way. I was told at this time point to not even considering another pregnancy due to the extent of my condition. My dream of having future children and giving my daughter a sibling was robbed from me as the overwhelming number of doctors have said it would be too dangerous.
Hours and hours of my life has been spent making phone calls and doing research to find doctors who would look at my medical records and come up with other possibilities. I have failed. Every phone call ended with world renowned physicians saying they’ve never seen this before and don’t know what else to test me for. Every phone call concludes with “I’m sorry, but I can’t help you”.
My general physician is also at a loss. He does not know how to guide me and confirms that I have to live each day taking extra precaution in every step I take, every door I open, and taking care of my child because the risk of new fractures is so great. These fractures in my case are in fact life threatening because I would not be a candidate for any surgical intervention requiring hardware. This makes every passing minute to be lived in fear. I am unable to get any pain relief due to doctors being afraid to prescribe anything because my pain will never get better. I am unable to sleep because of my pain. I have grown to be anxious and depressed from feeling so uncomfortable each day and not having anyone or anything able to give me some relief, but I also cannot take antidepressants or anti-anxiety medications because of its link to osteoporosis.
I have lived he last two years being poked, prodded, scanned, operated on, some highs of hope, and lows of testing for terminal diagnoses and anxiety of no doctor able to help. It had gotten to the point where I wished for a cancer diagnosis so I can at least have a reason of why this is happening to me and some medication to change it. The worst part is seeing my family go on this journey beside me. Their worry and fear of each result and passing day is so difficult to watch. My daughter deserves a mother who can take care of her, carry her, comfort her and the many other things a parent wants to enjoy with their child. My parents deserve to take a step back and enjoy their children’s accomplishments and their grandchildren growing beside them. My husband deserves a wife who is able to enjoy each day with him and take on life’s adventures. I have changed the lives of everyone around me because of my disabilities and loss of independence. The list is endless of all the things I cannot or should not do because I am in fact “made of glass” and no one can figure out why.
I am currently eighty-three pounds and down one inch in height. I am unable to enjoy a meal, engage with friends and have lost all that defines who I am. My passion of being a registered nurse and helping others was taking away from me as I am unable to perform any type of work at all. My faith in medicine also remains questioned. As my doctor once said, “my whole life and what made me who I am was put into a paper bag and lit on fire”. I have to reinvent myself, but how can I do that without knowing what my future looks like.
Please consider accepting me into your show and giving me some hope back. I have nowhere else to turn. I have seen every type of specialist there is. As a registered nurse I am more afloat of different avenues and possibilities for answers and they have all been exhausted. No thirty-one-year-old should have to live like this suffering in pain without anyone able or willing to help. My family and daughter need me back.