In October of 2010, Michaela started experiencing some pelvic pain after a routine work out. The pain escalated over the next few days so she went to see a doctor. They found nothing abnormal but her pain persisted. After many follow up visits and tests no cause was determined, the symptoms still remained and were escalating. Finally, after several months of no answers, Michaela was diagnosed with a rare condition called Pudendal Neuralgia http://www.obgyn.net/pelvic-pain/taking-shame-out-pudendal-neuralgia.
Very little is known about Pudendal Neuralgia to most doctors. It is a debiliating chronic pain condition caused by an irritation or damage of the Pudendal Nerve, one of the main nerves of the body connected to the pelvis, which affects majority of the pelvic area functions. We started doing research on what treatments where available only to find limited information and options. One of the first things we did learn was that there is no known cure, only symptom management. Over the next year, Michaela was put on a variety of pain medications, had a series of CT guided nerve blocks and countless hours of physical therapy. None of which brought any relief and in some cases made things worse. The doctor told us that the next step and only other option was a risky surgery. There were only about seven doctors in the world back then that performed this kind of surgery and the statistics of a successful outcome were not good. That’s when we decided to look for any kind of alternative treatments. We flew to Canada twice to try a very painful treatment called Shockwave Therapy. We also flew to NYC to have a special MRI done in hopes that we would get some more information on what exactly was going on. None of these treatments made any difference in symptoms nor did they bring any clarity as to what was causing them. And none of this was covered by insurance. By the end of 2012 we had spent thousands of dollars and still no results.
Around this time we started discussing starting a family. We were not sure if it was even an option for us given the circumstances. Again my brave wife pressed on not allowing her condition to dictate her life and desire to have a family. In February of 2013 we learned that we are expecting Eliska. The risk seemed to pay off. Symptoms of PN for some unknown reason started fading away. Michaela appeared to be in remission for about four years following Eliska’s birth.
Unfortunately, in April of this year, four months after our daughter Anicka was born, the symptoms returned, worse than before. Michaela was put on medication again and offered a round of nerve blocks and physical therapy. She is currently exploring these options, however, knowing they have not helped before and have come at a great expense we started researching alternative treatments yet again. There has been some advancement in managing this condition since 2010, however, most of it is considered experimental and not covered by insurance. Currently, Michaela is trying to get Botox injections, which proved to give some relief to others suffering from this condition. Botox is not covered for this type of pain and a single treatment costs about $1,600. The treatment might need to be repeated depending on the patient’s response. If successful, it needs to be repeated about every 3-6 months. Another option we are considering is traveling to Phoenix to a specialist who is familiar with this condition and one of the few doctors performing the surgery. There is a very little chance that any part of this visit would be covered by the insurance in addition to travel expenses. The visit with this doctor usually requires a 4-5 day stay at a nearby hotel so he can do a series of testing. Our goal at this point is to get at least some relief from the daily, sometimes unbearable pain, so we can keep looking for other alternatives and try to fight the insurance to cover some of the cost.
Living with this debilitating condition every day has taken a great toll on Michaela’s physical and mental health, often preventing her from spending quality time with the girls or doing even the simplest of things. Instead, getting thru each day is a struggle. She wants to be able to enjoy life and our family again and we are determined to keep looking for solutions. We have always been private about her condition and never imagined asking for help. However, with the limited treatment options, financial constraints, rarity of this illness and the increased difficulty to work due to pain, we would like to ask our family and friends to help spread the word and awareness of this life-altering condition. Hopefully, we can find a treatment that will give Michaela her life back.
Any form of help and support, whether it’s a donation or a piece of information is greatly appreciated.
Thank you so much for reading our story.
The Zasteras (Eliska, Anicka, Jason & Michaela)
- Pavlina Rice
- paul tuggle
- Amy Crnecki
- Amy Fairweather
- Tony and Rebekah Morrissette
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