This Blog is to document my daughter’s personal battle with a new diagnosis of Chronic Migraine / New Daily Persistent Headache ( which I had never heard of until she was diagnosed with it ). We continued to search for answers, and finally found them at Georgetown, Washington DC.
This blog is to document our story.
January 2013 – March 2013
My daughter Olivia, right around the time of her 13th birthday, came down with daily, non-stop chronic migraine pain that never let up, EVER. She never even had migraines before, and all of a sudden she has level 10 pain, 24/7, that will not go away. After trying over the counter medications, and seeing our doctor for a CT scan of head and sinuses (normal), an ophthalmology exam (normal), and everything else we could think of, we saw a local neurologist who diagnosed chronic migraine. She was given IV injections of steroid that usually ‘breaks the cycle’ of the migraine. It did nothing to help. She was started on Topomax, this also did nothing to help, and she actually felt worse. We tried acupuncture, and massage that felt good but gave no headache relief, then we went to the world renowned Diamond Headache Clinic. We thought that would be the answer that we were waiting for. This is where she also received the diagnosis of New Daily Persistent Headache (NDPH), which was extremely depressing as we were told it could last for years, it is difficult to treat, and may or may not go away on it’s own. After two weeks in the hospital, three pages of medications, three allergic reactions, two breathing attacks, and NO relief, we left feeling hopeless, and desperate for help.
My once active, straight A student, and athlete was burying herself under the blankets in the basement, telling me she just wanted to die. How helpless a parent feels when you have tried what seems like everything, and yet nothing is working to help your child.
April 2013 We came across a website entitled www.mydaughtersheadache.com, which literally saved Olivia’s life. We learned about nerve decompression surgery. Dr. Ducic at Georgetown University Hospital was giving life back to chronic migraine patients with a simple, out patient, peripheral nerve decompression surgery. We read up on it, reviewed the information on his web page and took action immediately. We asked for a nerve block, to see if this would help. This would also be used as a diagnostic tool, if she gained relief from it, she may be a candidate for the surgery. But most importantly, she needed pain relief. Why hadn’t anyone suggested this to us sooner? We were told by several neurologists, and headache specialists that there wasn’t much more they could do for her, that they had tried all they can and “maybe it will go away on it’s own”, or maybe she just needs to “learn to live with it”? What? I can’t accept that. My daughter’s life had come to a screeching halt, she missed 6 months of school, and friends, and activities, went through traumatizing events at Dr’s offices and hospitals, was met with disbelief and lack of concern….NO, I’m sorry, I cannot accept that.
May 2013 Olivia received an occipital nerve block, and lo and behold, she got pain relief for the first time in months. This also added the diagnosis of ‘Occipital Neuralgia’ to her current list of CM and NDPH. We realized we were on the right track, so I got her paperwork in order, sent her info to Dr. Ducic at Georgetown, and was told that she would be an appropriate candidate for surgery! We set a date, and made the appointment.
In the mean time, I had ‘specialists’ telling me that they wouldn’t jump into surgery, and one even went so far as to tell me that she would NOT be a candidate for this surgery. ( why not? Because YOU don’t do it? ) Well, that’s not what the surgeon said, so I chose to believe the expert that gave us hope, and not the so called ‘expert’ who could do nothing more for us, yet advised against it even though we had all of our diagnostic tests in order, and approval from the surgeon, AND our insurance company (which is not always easy to get)
June 2013 This surgery has given Olivia her life back. She was able to come out of the basement, get back into school, regain her ability to see her friends and have a social life that every 13 year old girl deserves to have.
At the time of writing this, she has had only one surgery; decompression of Greater Occipital Nerve and excision of Lesser Occipital Nerve, but will be having two more areas done, the Temporal and Frontal to be completely pain free. We are confident that she will be completely pain free, cured of this awful disease that so many suffer from. I wonder how many people are told what we were told, with no idea there are options such as this. I know I have talked with quite a few already, that is why I am making this page. I have talked with many who are given no hope, and have no where to turn, and feel as hopeless as we did.
Please check out Dr. Ducic’s information, and see if this can help you!
Please feel free to contact me if you have any questions about the procedure that gave my daughter her life back.