Another MRI
We left early this morning to go to Maryland. Haley had an appointment at 10:00 for an upright flexion and extension MRI of her cervical spine. We arrived just a few minutes early and she was taken back for the MRI. She was in there for over an hour, and she said it was quite painful as they had her tip her head way back and hold it there while they got images. Then she had to bend her head way down and hold it while they took more images. They brought her back to the lobby and we waited while they burned two copies of the CD--one for us to keep and one for Dr. Henderson.
Here's a picture of her waiting for the CD.
Off To See The Wizard
Next we traveled about 30 minutes to Dr. Henderson's office. He has many nicknames that I've seen on the face book group of his patients, among which is "The Wizard". He's also called "Superman" and an angel, among other terms of endearment. When we arrived, Haley walked from the parking lot all the way into the office, which is in a high rise building, so it's not a short walk. She was tired and in a good bit of pain, so the sweet nurse asked her if she wanted to lie down. She said that she did, and we were escorted into a small office with an exam table in it. We waited for a while, and while we were in there, I noticed a model that showed the hardware was placed in Haley's skull and neck during surgery. I snapped a quick picture because I thought some of you would want to see what she had done. This model only showed fusion to C2, but hers was to C1 and C2.
Pretty impressive, huh?
Encouraging News
Dr. Henderson was really pleased with how Haley is doing overall. He popped the CD into his computer, and took measurements. It seems that she has two areas in her neck that have some instability. These are between C4 and C5 and between C6 and C7. He took measurement and said that the "pathologic threshold" (where surgery is warranted) is 11.5 degrees of movement. Hers measured 11 degrees, so not enough for surgery at the present time. Yay. This is good news. He also showed us that the bone he added is growing well and that her brain stem is really straight!! This is great news. He was delighted to learn that she has not fainted one time since the surgery.
So Why The Headache?
That was the question. He gave two reasons for the headache. First, the instability causes the type of headaches she has (along with the occasional vomiting--who knew?). He asked her if the headache was worse with the neck brace off, and she said that it was. (He didn't seem surprised.) He asked her where her head hurt and she showed him where it is the worst. He said it is from TMJ dysfunction. The neck brace is causing her to clench her teeth, which is putting a great deal of pressure on her TM joints. The pain is not felt at the joints themselves, but elsewhere in the head. He wants her to get a bite guard and to stop wearing the neck brace ("unless she's riding in the car with her mother driving!" Ha ha. He's such a comedian.) He also wants her to begin physical therapy to strengthen her neck muscles, work on balance and core strength and also improve her posture. He said that when she gets stronger and consistently holds her head up straighter, the headache due to instability will improve. He also put her on an exam table with the head of it at 45 degrees. He asked her what that did to the headache, and she said that it improved it. He said that this was proof that she does not have a spinal headache. If she did, it would be worse even at a 45 degree angle. He's a pretty smart guy, and he really seems to have a genuine affection for Haley. He will see her again in 6-8 weeks. Of course, with the Ehlers-Danlos syndrome, we know that she will be inclined toward instability for the rest of her life, so we assume that she will probably need fusion at other levels in her spine. But for today, this was really good news.
Here is a picture with Haley and Dr. Henderson
He told me he was going to charge me for taking this photo, and I said that I was sure we had already more than paid for it!! (Take that, funny guy!) He really is a dear man and we believe that God is using him in the lives of many people like Haley who have suffered for so long.
Thanks for your continued support. We have renewed hope for Haley. The road will likely be rough, but God is faithful!
Hi, Amy. A dear lady named Beth C., whom I barely know at our new church was talking about Haley during Bible Study, asking for prayer. I can't remember if she went before or after me during prayer requests because I was too busy blubbering about my son who has Down Syndrome and how I have the hardest time accepting God's task, assignment, choosing, purpose and/or providence. *sigh* Learning about your blog from Beth brought me hope because I know there are others who suffer just as much or more than I. Each of us is given according to His will for His glory and our good (as you know). So, I was sure that I was feeling WAY too sorry for myself. Regardless, reading through your June/July posts has given me hope that whether the pain is physical, emotional, spiritual, etc. He undergirds us along the way and gives us blessing upon blessing in the midst of it. Thank you for being a beacon to me, akin to my other beacon and sister in Christ (whom I've never met), Anne Voskamp. Blessings to you all and sweet Haley. It sure tugs at a mother's heart to read through this. But, what stuck out to me the most (as a little girl who read Psalms to her daddy at his request) was the Bible reading that your family does together through this. Staying in His Word... kind of like a spiritual IV. ;)
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