I am 24 years old, newlywed with a 7 yr old son, Medical Assistant in a Christian Family Practice and that has recently (September 2011) completed treatment of for an infection called Petrous Apecitis or Petricitis. It is an infection of the Petrous bone which is in your ear, closest bone to touch your brain. It is a rare complication of sinus and some ear infections in today's society of antibiotic treatment. It has been poorly studied since the 1940s due to its infrequent occurrence. It is a hard area to reach to biopsy or culture to know what to even begin treating the infection with medication wise. And in many instances the bone has to be completely removed a long with the mastoid, which is the bone you can feel directly behind your ear, to cure.
I was diagnosed on June 09, 2011 after 3 consecutive months of the most excruciating headaches I have ever experienced, loss of the peripheral vision out of my right eye and right sided facial drooping. My primary care physician ordered me to the hospital for diagnosis of what seemed to be the most severe migraine I'd ever experienced and treatment fast. Previously, I was turned down by all Neurologists within my healthcare network for an urgent referral to be seen even after my doctor called personally to discuss my case. The soonest anyone could work me in would be 6 weeks.
After my initial diagnosis I had placed what is called a Picc line (peripheral inserted central catheter) for antibiotic therapy. Most people are most familiar with a port inserted in the chest, but a Picc line is through a vein in your arm that is threaded into your chest and into the superior vena cava (or the large vein that carries deoxygenated blood to your heart). I have been on IV antibiotics since.
I spent 1 full week in the hospital then was released with the understanding when returning to work I could have no patient contact, was not to lift more than 5 lbs with my right arm or help with any kind of patient care. In the midst of my treatment the clinic that I have been with for nearly 4 years moved from Hillcrest Hospital affiiliation to St John Hospital affiliation. No PTO, short term disability or sick pay to carry over or be available to use for 90 days. Which meant any doctor appointments, days I didn't feel well enough to come in or even holidays would not be covered. (So to be honest, the worst time ever to be severely sick.) And to make financial strain even worse the IV antibiotics I was placed on wiped out my immune system, so much so that I had to be on FMLA because even a cold could've landed me in ICU. I did receive an injection to bring my levels and it took 3 weeks to go to work. I spent 6 weeks attached to an IV pole for a total of 6 hrs each day. Waking up at 4 and 6 a.m. for treatments prior to getting up at 7 a.m. and coming home and repeating from 6 p.m. to 9 p.m. The pole was heavy and hard to maneuver so most nights I could not help make dinner, clean my house or put my own son to bed. Tasks to be left to my Mother and now husband. I was then switched to an oral antibiotic and 1 IV treatment taking 30 minutes a day,(due to the previous antibiotics wiping out my immune system) which allowed me to help more. But my symptoms of headache, and nausea, vomiting, loss of appetite and body aches (from the medications) continued for months to keep me down for a large portion of my days. Which leads us to now, not only did I have Petrous Apecitis, which is very rare, but I have another "freak" syndrome called Ehler's Danlos. It is an syndrome that effects every connective tissue in my body including my heart, kidneys, bones, ligaments, tendons, joints and even skin. This caused a prolonged hospitalization (26 total days), a surgery that could only be performed by an advanced robot, called the Da Vinci, just 2 yrs ago. I spent 3 months out of work at that time and have paid over $14,000 out my own pocket after insurance, which was only paid off months ago. I now also have been diagnosed with a rare syndrome that is a directly caused by Ehler's Danlos, call Thoracic Outlet Syndrome.(a syndrome where the thoracic outlet, a bundle of nerves, fibers, veins and arteries underneath your collar bone are compressed leaving little to no room for blood flow and nerve conduction) For months they treated me with the belief I had another excruciating syndrome called Trigeminal neuralgia. After many expensive tests, a lot of medications that made it hard to work let a lone function, my doctors have all come together with the diagnoses of Thoracic Outlet Syndrome. I am in need of a surgery that most vascular surgeons will not perform especially on someone with EDS. The surgery requires an incision about 6 in long to be cut under each axilla (arm pit) then removing a section around 1-2 inches long of each of my first ribs near my collar bone. At that time the dr will also cut both my scalene muscles so they are no longer able to contract, ALSO while he's in there he must "rewire" my entire brachial plexus nerve (the one that controls your arms). By doing this surgery it should relieve the agonizing headaches I live with daily and return the circulation to my arms, neck and head.
To add also to my book of past surgeries I had Laporoscopy March 17, 2011 to drain a right ovarian cyst and remove a large band of Endometriosis. That too has just recently been paid off. My husband and I paid for our own wedding (not expecting any sympathy there as I believe most couples do nowadays) but it just adds up to I'm pretty much broke with no savings to begin this lovely rendezvous with another new, hard to treat Medical Ailment.
The money raised will go to prescriptions, doctor office visit copays, high MRI copays, rent, food, gas to get to and from visits and any other daily normal living costs. I appreciate any donation whether it be $1 or $100. Thank you. I can't honestly say how much I really do appreciate all that every one does.
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- love ya kiddo, Mary, Rodney, & Maddy
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