Help Danielle Get Life-Changing Medical Procedure

Hello Everyone,

Thank you for taking the time to read our story. As most of our friends and family know, Danielle has been battling chronic health issues since she was a young teen. In 2012 her symptoms went into overdrive, leaving her disabled - unable to work, drive, or participate in many activities outside of the home. She was diagnosed with postural orthostatic tachycardia syndrome (POTS) which, putting it in the simplest of terms, causes her to have increased heart rate, shortness of breath, fatigue, difficulty with digestion, brain fog, and syncope. In the years since the POTS diagnosis, she was diagnosed with several other comorbid conditions including mast cell activation syndrome (MCAS), small fiber neuropathy (SFN), idiopathic hypersomnia, and, most debilitatingly, chronic vestibular migraine and migraine with aura in the brainstem (MBA, formerly termed basilar migraine).

When Danielle has a migraine aura, it often resembles stroke or seizure-like activity. Her face droops on the right side, her vision blurs, she has difficulty hearing and understanding, she cannot verbally communicate well, she is unable to hold her body upright without assistance, and she often goes in and out of consciousness. She is then left with dizziness, vertigo, tingling and numbness throughout her face and arms, head pain, and hangover-like fatigue. The picture below was taken during one of her milder episodes.

For the past five years or so, her POTS has thankfully been well controlled with medications and lifestyle changes. Unfortunately, we have not had the same success when it comes to her migraines and, as a result, she is still disabled and needs some level of caregiving from James most days - on easier days it usually means driving her places and helping her walk to the bathroom in the morning or at night, but on more difficult days it means helping her in and out of a wheelchair, making sure she doesn't fall when she is going in and out of consciousness, and helping her get up when she does. Our lives, and the dreams we had individually and collectively, have been altered so much more than we can express.

Over the past 11 years, Danielle has tried 37 different medications to treat the migraines; implemented dietary and lifestyle changes; been treated by multiple neurologists including two of the top headache specialists in the nation, homeopathic practitioners, pain specialists, biofeedback and cognitive behavioral therapists, and neuromuscular doctors; undergone extensive testing such as repeated MRIs of the brain and cervical spine, neuromuscular testing, and multiple rounds of vestibular testing. Several of the medications brought moderate relief for some time, reducing the migraines from daily to approximately 3-4 days a week, but unfortunately, over time the effects waned. Since November, the migraine has been pretty much intractable despite trying more than a handful of newer medications, including steroids and multiple rounds of rescue sleep therapy (which is just like it sounds - the headache specialist prescribes a sedative that you take for several nights along with Benadryl in the hope that it will put you in a deep sleep, calm your system, and break the current migraine cycle).

This brings us to the reason why we are asking for your help. A few months ago, Danielle heard about a different type of migraine treatment from a few individuals in her migraine with brainstem aura support groups. These individuals had great results with a procedure that uses nerve stimulators placed at the occipital and supraorbital nerves. Nerve stimulation is certainly not a new procedure, and there are a couple of devices on the market that target the supraorbital nerves or the occipital nerves for headaches, but this was the first time we had heard of complex migraines like Danielle's being successfully treated by targeting both of these areas at the same time. We decided it was worth looking into further so we reached out to the physician in Texas who developed a method of using the occipital and supraorbital nerve stimulators simultaneously to treat migraine. We spent over an hour and a half on the phone talking to him and having all of our questions answered before deciding to travel to TX to have the trial procedure.

The trial procedure took place Tuesday, April 11th - Friday, April 14th. Danielle's migraine was 8/10 on the pain scale going into the procedure and she had several debilitating aura episodes in the two days prior. She felt a remarkable difference the moment the nerve stimulator was turned on. The constant dizziness she lives with each day was gone and so was the sensitivity to light and sound and the head pain. Over the next few days, we had the opportunity to test out the stimulator's effectiveness by exposing Danielle to a variety of triggers and activities. We went to see a movie in the theater, something she has been completely unable to do, and when she started to feel the beginning of an aura, she adjusted the settings on the stimulator and it resolved the aura and took the symptoms away. We went to several extremely noisy restaurants, ate and drank foods that almost always cause symptoms, went for a walk in the park in the heat, sat and visited with family members for five hours straight, went shopping, and listened to loud music. We did everything we could think to do in the time we had to bring on a migraine, and there were at least seven times when a migraine episode would start and she was able to get it to go away completely by changing programs on the stimulator.

Sitting in a restaurant, noticing an episode beginning to happen with the knowledge that within a minute or two it would have resulted in her being unable to speak or stand, yet with this device, having the power to interrupt that process and stop it before it happened was incredible. The entire time she had the stimulator in she never once had a migraine; there was some tiredness and a little dizziness at the end of each day because of staying so busy but nothing like what she usually deals with. In the past 11 years, we cannot remember another time when she has gone 3 and a half days without a migraine. The trial stimulator had to be removed on Friday and, as expected, her migraine returned 15 minutes after and the days since she has felt awful, especially Saturday when we flew home to NC and she had a stroke-like episode that lasted the entire two hours we were in the DFW airport.

The doctors ask you to give the percentage of improvement you experienced with the device and Danielle said there was a 90% improvement in her symptoms, which is far greater than we expected. She is a candidate for the permanent procedure and is scheduled for surgery on May 9th. We believe this will be life-changing for both of us. It is not easy living with these debilitating migraines and it's also not easy being a caregiver to someone who has been living like this for 11 years. It has taken a lot out of both of us physically, emotionally, mentally, and financially over the years. We are hopeful that this surgery will be a turning point in our story.

As far as we can tell, this specific procedure to treat migraines is only being performed by Reed Migraine Centers and their physicians in Dallas, TX. The permanent procedure involves having two leads placed above the eyebrows, targeting the supraorbital nerves, and two leads placed at the occipital region in the back of the head. The wires are then tunneled through the neck and chest to a rechargeable battery that is implanted on the left side of the chest. Danielle will be able to adjust settings and change programs using an app on her phone, allowing her to target specific areas whenever symptoms begin. We will fly into Dallas a day or two before the surgery, have a follow-up appointment three days post-op, and then fly home. The full recovery takes 4-6 weeks.

Since Danielle is legally disabled, she has Medicare for insurance. Medicare Advantage Plans normally help with the cost of medical procedures, but because we are out of state, thus out of network, they will not cover this procedure. Therefore, we are reliant solely on standard Medicare for insurance. Although Medicare will cover the procedure, as a patient Danielle is responsible for 20% of the cost. Our out-of-pocket cost for the trial procedure and permanent procedure combined is estimated to be around $12,000, not including travel to and from TX (approximately an additional $2,000). With James being the only one working for the past decade and Danielle's other medical expenses, this will be difficult to pay for without help from others. We should have the exact figures sometime soon and will update this site at that time.

We feel incredibly thankful for all of the love and care our friends and family have showered on us over the years, and it is with humility and gratitude that we ask you to consider helping us financially. We hope you know that we would not ask you to consider contributing your money to this surgery without the confidence it will drastically improve Danielle's quality of life. Her dreams are to one day work outside the home again, drive a car, attend concerts, travel overseas, and easily visit family and friends more often. She just wants to live more normally, without as much pain and difficulty. We believe this surgery will help get her to that point. We know that our GoFundMe goal may not be reached, and that's okay. Truly, every bit helps. If you would like to donate but prefer to do so using Venmo or by personal check, please let us know and we will gladly share that information with you. We know that the past few years have been especially hard for everyone, and we ask that you only donate if you can comfortably do so. Even if you are unable to contribute monetarily, we appreciate your thoughts, prayers, and well wishes on this endeavor and would love it if you would be willing to share our story with others in your community.

Thank you from the bottom of our hearts,

Danielle and James Hines

Danielle has written a few blog posts about her health issues at https://alongwayfrombroken.blogspot.com/2018/01/when-my-illness-causes-scene.html