This is a quick synopsis of my pain. At the age of 12 I began having severe migraines. I was in chronic pain for years. After being referred to an ENT, I was told I have Parry-Romberg syndrome, which is a rare disorder characterized by slowly progressive deterioration (atrophy) of the skin and soft tissues of half of the face (hemifacial atrophy), usually the left side. It is more common in females than in males. I was clueless as to what he was talking about. After years of suffering, I was still in search of a doctor who was willing to help me overcome this pain. I was unsuccessful for years. In my last year of school, I was in pain constantly everyday. Resulting in missing more than 50 days of school. I was given all types of meds over the years to no avail. Sometimes I would sleep in my closet because it was always cool inside of it, and the darkness helped because of the migraines. My parents were clueless on how to help me. My family period didn't know what to do. At 18 I became pregnant, and during the pregnancy, the migraines continued. I began to notice that after I brushed my teeth there was this tissue like substance that I spit out. Once again, I didn't know what to do. I kept it hidden form everyone because I had caused enough grief and missed emotions because I was always in pain. I didn't want to seem 'needy' or get on anyone's nerves more than I had to. So, years went by...I still remained silent. I wanted to know if any noticed my that my face was 'disappearing' before my eyes/heir eyes, but no one said anything, in my family that is. One day while in the store, a lady I knew from my childhood church approached me. She didn't speak, she simply blurted the question, "WHAT HAPPENED TO YOUR FACE? I DID NOT KNOW YOU WERE IN A CAR ACCIDENT!!" I wanted to scream, and tell her about herself, but I responded in mere tears that I was NOT in an accident, and that nothing was wrong with my face. I walked off. THAT made me even more saddened by the culprit Parry Romberg. I hated the fact no one in my family questioned me in concerns, but a lady I barely knew asked me in such a disturbing way. After that incident, I didn't like to look in the mirror. I felt ugly. I felt hurt, and at one point I just wanted to cut myself off from the world. Having one side of my face disfigured was horrifying to me. Although, people tell me they can not see the difference, I feel they are trying to make me feel better about myself. All I know is I look in the mirror t an angle most days, avoiding the left side of my face. On top of Parry Romberg syndrome, I was later diagnosed with Trigeminal Neuralgia. I researched and researched PR and when I found out that the nitial facial changes usually involve the tissues above the upper jaw (maxilla) or between the nose and the upper corner of the lip (nasolabial fold) and subsequently progress to the angle of the mouth, areas around the eye, the brow, the ear, and the neck. The deterioration may also affect the tongue, the soft and fleshy part of the roof of the mouth, and the gums. The eye and cheek of the affected side may become sunken and facial hair may turn white and fall out (alopecia). In addition, the skin overlying affected areas may become darkly pigmented (hyperpigmentation) with, in some cases, areas of hyperpigmentation and patches of unpigmented skin (vitiligo). Parry-Romberg syndrome is also accompanied by neurological abnormalities including seizures and episodes of severe facial pain (trigeminal neuralgia). Yes, If you have not figured it out, I was distraught and confused wondering HOW and WHY me?! I was diagnosed with Trigeminal Neuralgia which was left untreated for years before the diagnosis. The TN caused even more pain on my left side as well as my heart, emotionally and mentally. I went back to my neuro and he told me he would perform MRI because the pain was getting more intense. The results of the MRI showed I had a pineal gland cyst. I was hysterical by now. WHAT IN THE WORLD? What had I done to deserve Parry Romberg syndrome, Trigeminal Neuralgia, migraines, and now a cyst on my pineal gland. The day I found out about the cyst, my neuro told me he was relocating to another state. I was left with unanswered questioned as he did not know much about the cyst, and told me not to worry. I cried. Then, I sobbed uncontrollably in my husbands arms. I had my first panic attack. I tried for months to find a new neuro to no avail. So, once again I was stuck in pain, which led to depression. I was giving up hope. I finally found a new primary physician and she referred me to a neuro. My new neuro was not familiar with Parry Romberg syndrome or Trigeminal Neuralgia. This made me hopeless even further. She tried me on over 5 meds, a 3 days stay in the hospital to receive a DHE for the pain, and more meds that did not help. After 6 months, she finally said I do not know how to treat you for your pain. She refused to give me pain meds, so daily I was in pain. What she did do was refer me to the Mayo Clinic in Jacksonville, FL. My NEW and helpful neuro was very concern, should compassion, and actually took the time to speak with me, asking questions and making suggestions. I had NEVER received such care since the age of 12. Dr. James Meschia, referred me to Dr. Wharen. Dr. Wharen was jsut as compassionate as Dr. Meschia. I was seen by Dr. Dorsher immediately after Dr.Wharen on the same day. Dr. Dorsher was even more compassionate and suggested we move towards getting to the root of my pain before considering surgery. So, on October 22nd, I will travel back to Mayo Clinic in Jacksonville, FL to undergo a pain procedure. I am not sure of the details of the procedure yet, but I will keep you updated.
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