Our Journey to the Mayo Clinic, the long road to hope.

I mentioned a few times recently that we were headed to the Mayo Clinic in Rochester, Minnesota last week.  I felt like I should give you an update on that experience.  I know I have friends who read the blog who are waiting for an update, I also consider you, my faithful readers as friends too.

Our daughter Emily, was diagnosed with chronic daily headaches due to concussions.  For the last 2 years it has been a struggle for her, and ultimately our family, as she has tried to cope with chronic pain.

I wrote in this post about how designing our media room was a type of therapy for her. At that point, she had been able to return to school, but still dealt with pain, a pain she ultimately hid from us until it became just too much to bear.

Fast forward to this year, her freshman year of high school, when the headaches became overwhelming and she could get very little relief despite trying many different medications. All of which was determined by the Mayo Clinic doctors to be too low of a dose to be very beneficial.  Missed days of school piled up quickly which compounded the stress on her.

We felt our only option, since medications weren’t helping, was to have her start homebound studies.  Homebound studies is offered through our school for students who have a medical condition that prevents them from attending school.  A teacher comes most days to provide work and instruction when needed. This was our way of dealing with the chronic pain when we thought we had no other options.   It was very beneficial to her and her headaches became much more manageable, but her life had begun to get very small with limited activities.

We felt our last hope was some type of procedure, either Botox or a nerve block, to try and find her some relief and get her back to the life of a normal teenager.  Once our pediatric neurologist said she has never had any doctor willing to do a procedure like this on a teenager, we sought a referral to the Mayo Clinic from our family physician.

View from the Mayo Clinic, Rochester, Minnesota

And while we waited over four months to be seen, it is with a grateful heart I can report that our trip was very helpful.  Not only did we meet with an amazing team of doctors, who offered support, answers and hope, she ultimately received the nerve block we had been hoping for all those months before.

The remarkable thing about having the nerve block done was that so much time had passed waiting and praying about the success of this appointment and wisdom for the doctors, that I had forgotten having a procedure done was ultimately what drove us to the Mayo Clinic.   I was so open to what the doctors said I never even brought the subject up. After her examination, the Pain Medicine Doctor said Emily was a very good candidate for a nerve block procedure.  The doctor even stayed late the next day to fit her into her schedule before we were scheduled to return home.

While the procedure was very painful, thankfully the severe pain was only for ten very long seconds per side.  It was also nevertheless, a very uncomfortable ride home to Missouri.

Sunset on the soft, rolling hills of Iowa countryside.

The results so far….Emily is currently headache free.

She is willingly following all of her doctors orders. But besides increasing exercise, she hasn’t had many opportunities to trigger her headaches. Time will tell how this will all play out.  The hope, what we continue to pray for, is that the numbing of the nerve for several days will be enough to reset the nerves.  The injection also included a steroid medication that can facilitate healing.  If she finds relief, but the pain comes back in 3 months, she can have another injection.

One thing we can observe physically is the swelling that has been evident on her forehead for the last two years, is going down.  She can actually cause her forehead to have “wrinkles” when she raises her eyebrows.  I think that’s proof it is working.  She does too!

I want to express what a worthwhile experience our trip to the Mayo Clinic was for us.  To have a team of doctors, each take time to discuss her condition and each make their own recommendations based upon their expertise was extremely helpful.  We felt that everyone was very encouraging and offered her options for treatment and ways to cope with chronic pain. Most importantly they offered hope that she will indeed return to her life fully, the life of a beautiful, vibrant teenage girl and ultimately to the life God has called her.

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