Friday, June 25, 2010

Trip to New York June 18

June 18 was the big day. It was officially 2 years after my tethered cord surgery and my previous invasive cervical traction test.

Gustavo and I went on this trip. We stayed at the Variety House.

In the early morning of the 18th, I went to get new imaging done. 2 MRIs, 2 CTs, and several x-rays. Of note, we did a flexion and extension x-ray. I was surprised to find that during the extension x-ray, I was able to extend my head back all the way until it was touching my upper back, despite having an intact skull to C-4 cranio-cervical fusion in place. That's EDS for you. Super flexible!

Anyway, my appointment at The Chiari Institute was scheduled for 3:00, so of course, we went in at 6:00. We talked with Andrea, a very nice nurse practitioner for quite a while. We discussed all of my symptoms and my current condition. After that, we waited a bit more. Then, we finally went in to see Dr. B. It was his last appointment on a Friday evening, so he was very relaxed and making jokes. We got to meet with him in his main office instead of an exam room. During the visit, I did not feel pressure to prove myself to him at any time. Instead, he just explained what the next steps would be for me, in detail.

1. Need a good DEXA scan. Good means borderline normal, or a T-score at or above -1.0.

2. Need to continue treatment for bones now and after surgery.

3. Invasive Cervical Traction needs to test positive for instability.

4. Cranio-Cervical Fusion Revision will be performed.

Dr. B said that no bony fusion formed between the skull and C2, so the area has collapsed, due to osteopenia. That is the reason why the symptoms never got better, and have even gotten worse.

This is why it is so important to have strong, growing bones at the time of fusion.

Instead of one solid mass of bone and titanium, I have just naked rod connected to my bones. The area never filled in with bone.

The newest revision technique has been very successful at preventing this problem. It involves replacing 90% of my hardware. It also involves using a cadaver fibula in the shape of a V along with ground up cadaver bone, all tied together with titanium wire. This all encourages a bony fusion to form.

This surgery has been successful for many people and formed solid fusions for them.

It felt like a very successful visit, and I feel like there are not many roadblocks left on my way to surgery.


Next, I went to my general practitioner this week. He listened to the update, and he immediately prescribed Forteo for me. Awesome. I started it on Monday! So I'm back in the bone-building game.

He also ordered a new DEXA scan to be done, which I had done yesterday. We got the results today. Unfortunately, the results were not what we were hoping for (-1.5 and -1.7). I believe very strongly that the difference has to do with slight differences between machines. My former endocrinologist told me that every single DEXA machine reads differently from every other machine, so you should try to stick with the same machine. Also, on the DEXA results, it says that changes of <5% are not statistically significant on repeat scans.

So, my current plan is to continue DEXA treatment for 2-3 more months, and then have a repeat DEXA on one of the other two machines that I have been using for treatment, whichever one I can get in to use. I truly hope that that makes the difference in the results that I need. When we're looking for such small changes, it seems like anything could make the difference. Hopefully, it really is just the change in machines.

The hard part will be convincing insurance to cover another DEXA this year. But it's so important, I would do whatever it takes to get another one this year. I can't put surgery off forever, not when I know how good it could be. This is just one more frustrating delay.


My roommate at the Variety House was recovering from this exact surgery. And she was doing remarkably well. She felt so much better. She looked so good. She sat up by choice. Her post-surgical pain seemed minimal. She went into the city to see a show! Her success is my new inspiration to keep going until I have this surgery.