Surgical Review Board Says....

No to Invasive Cervical Traction at this time.

I'm not surprised, nor am I disappointed, as I did not expect anything at this time. It's too soon, and I know it.

Oh, the wonders of having very low expectations and very little hope (for now).

Dr B, however, wrote to me directly, telling me that I should schedule a follow-up visit with him, now. I really don't understand why I would need to see him right now. He's the neuro-surgeon. I don't qualify for invasive traction or re-fusion at this time. So, why would he want me to fly to New York to meet with him right now? Maybe he's changing my surgical plan? I'm just not sure why I need this appointment right now. This is the waiting time. Waiting for the bones. Then, when I have a better DEXA scan, wouldn't that be a logical time to have a follow-up visit? When my body is ready for surgery?

I'm going to ask my nurse about the details of the visit, to see if she has any answers. But I suppose, if THE man wants to see me, then I probably want to see him, too. I don't have much else to do right now, to be honest. Really quite bored.

Maybe...

I heard from my nurse at TCI, and she said that Dr. B is willing to see me for a follow-up appointment now, meaning that he thinks my bone density has shown enough improvement. However, we need to wait until the surgical review board votes to determine if I am approved for Invasive Cervical Traction. So, I was given the option of going to see Dr. B right away, or waiting until a decision is made on the traction. I decided that for financial reasons, we will wait until a decision is made on the traction, and hopefully do both things on the same trip to New York. Of course if it isn't approved, then the whole trip will be delayed anyway.

That's the update...not much of one. I'll write again when I have actual news, from the surgical committee, since they seem to decide everything now anyway.

Reassessing

As I discussed in the last post, I've needed to reassess my situation, based on the fact that my surgery will most likely not be this spring. (I haven't yet heard anything final from my nurse at TCI or Dr. B...I'll let you know when I do hear something final.) I am determined to not let this discouraging news paralyze me.

So today, I would like to write about what my new plan for the next months of my life will be. Without a plan, it's easy to lose hope. But with it all written out, I can know that I am on track for a determined future.

First, I need to hear from TCI, of course. I need to find out what bone density numbers I should be aiming for, so I can know how soon I should plan on having my next DEXA scan. Also, I'd like to ask them for a prescription for a new CTO (cervical-thoracic-orthosis). I haven't been able to wear mine, ever, because it doesn't fit right. I'd be interested in getting either an Aspen CTO or a custom CTO. This may allow me more upright time during the day until I can have surgery.

Next, I made an appointment to see my endocrinologist. I would like to discuss several things with her. First, I'd like to make sure that she is willing to extend my Forteo treatment until surgery (and for at least 3 months after surgery, to allow adequate bone growth after surgery). I'd also like to find out if she has other recommendations to raise my bone density. I'd love her advice on specific exercises I can do or any dietary changes I can make. I am also curious if there are any other supplements she can recommend or if she would recommend a limit on the amount of salt I take in each day.

Also, I have made an appointment to see my POTS specialist. I need to see him yearly. I would be interested in his ideas on how to manage exercise with the extreme heart rates endured by my body.

I also need to get a new local cardiologist to monitor my bicuspid aortic valve and valve leakage problems. I need a new echocardiogram as well.

Dr. F recommended that I try Myofasical Release. However, I have yet to find any doctor that practices this within the confines of evidence-based medicine, so it is not covered by insurance, and I am not really interested in it at this point in time. I know that physical therapists have other therapies to offer that may be of benefit (like laser therapy). Unfortunately, only myofascial release was recommended at this time.

I have gotten orthotics for my shoes. They are extremely uncomfortable, but supposedly, that means they're working! If they were all squishy and gel-based, they wouldn't be doing anything for my sagging arches. Mine are made of cork and leather, and they are serious business. I think I am gradually getting used to them.

Since I got my bone results at the beginning of March, I have started two things: I've begun nightly exercise, no matter how terrible I feel. I can tell that I am stronger already. I'm following my own exercise plan, based on the equipment I have available, and the ridiculous number of exercises I've learned in my year of private training and multiple stints of physical therapy. But I really have to base the plan on my body's abilities for that day.

I've also reduced my salt intake by 66%. I'm now taking only 2 salt pills a day (instead of 6). It's a challenge. I've added Gatorade, and I think I'll need to add more. I just may chug Gatorade all day. I'm wondering if I can cut the salt pills in half, so I don't get such a megadose of salt. Just a little kick to keep me going. Then, maybe I could take them more frequently and not zone out so much of the day.

Besides that, I also plan to take a Spanish class at the local community college this summer. They offer a blended course (half classroom, half online). That way, you spend half as much time in the classroom. And classes are offered in the evenings. So, it would be a real possibility for me. It might be overdoing it, but I'd really like to do this.

So, that's the plan. I just need to hear from TCI for confirmation.

Dealing with Disappointment

I've been forced to learn a lot about dealing with disappointment in my years of being sick. The most constant disappointment has always been the failings of my body. I had to learn in high school that for some reason, my body couldn't do the things that it should be able to do. I missed out on opportunities that I could have enjoyed. Every day was more challenging than it should be. But I learned to deal. I had no choice but to get through high school, excel in my courses, and move on to college. So that's what I did.

My next major disappointment came with the first surgery, in July 2002. It was an initial success. I felt better than I'd ever felt. So, when I began a quick decline after six weeks, having to eventually drop out of college, that was a major disappointment. But I learned to deal. I needed to remain a student to keep my health insurance. So I enrolled in community college and adjusted my expectations for myself. I also made an appointment at The Chiari Institute (TCI). I had to wait 9 months to go there. In that time, I became quite underweight, and lost most of my ability to function. But I kept pushing on, with a new goal in mind.

At TCI, we made plans for another surgery, a cranio-cervical fusion. I went through hard times. I missed out on a lot of life. But I believed that if I got through this, I would have my life back. So, I kept pushing.

My next major disappointment came after this surgery. Despite intense physical therapy, massage therapy, and a lot of patience, I wasn't getting any better. There was nothing more that could be done for me at the time. And my body was more broken than it had ever been. I was very lost for a while. In the end, I had no choice but to form a new plan and start moving forward again. So, I kept working and found a way to return to my college, in an electric wheelchair, 9 months after surgery. It was a long road, but I worked hard, with a goal in mind, and graduated school as planned. I even began working, part time, after graduation. I started my own piano studio, teaching 10 hours of lessons a week.

Unfortunately, the next disappointment was never far behind. As hard as I tried to pretend that I was fine, it was clear that I was not. My symptoms were unbearable. I hadn't contacted TCI in a while. When I did, they ordered some tests. They decided it was time for my next surgery. Life would need to be put on hold again. In June 2008, I had my spinal cord untethered. During the same trip, I had a life-changing experience: I had invasive cervical traction repeated. This test came back positive. This means that even though I already have my head fused to my spine, I still need more surgery to correct a problem of functional cranial settling in the area. So, I had a new reason to hope. The surgery on my spinal cord didn't seem to help much. I have actually been on a decline since then. I would have begged for them to perform the other surgery that day, but they wouldn't. They won't perform the surgery until my bone density improves.

That has been a new source of disappointment for me: my frustrating bone density. When I was first tested, my bones were practically average; just a little soft. But not strong enough to qualify for surgery. Unfortunately, the first endocrinologist I saw refused to treat me. There were two reasons: he refused to treat a pre-menopausal woman for osteopenia. And, he refused to treat osteopenia that was so mild. When I brought him a note from my neurosurgeon, he refused to see me anymore. He did refer me to another doctor.

The next doctor had similar concerns. The medications used to treat osteoporosis and osteopenia are untested in women my age. So you need to have really bad bones to get approved for them. It was decided that we would start with non-drug treatment. Unfortunately, my next DEXA scan, of course, came back worse than the last. So surgery was looking further and further away. Then, in October 2009, we finally started with a drug treatment (Forteo). Since it is such a strong drug, there was hope that it would show significant improvement after 4 months of treatment, which is when I had my next DEXA scan. Unfortunately, this showed very little improvement. So, we are back to waiting. This may mean postponing my wedding this time. We had actually planned the date based on having surgery sometime around this April. So, we may have to re-think that.

If I've learned anything from all this, it's that there are ways of coping with major life disappointments. For me, I need to stop and grieve over the loss. Then, I need to re-assess the situation. Then, I need to set new goals and time-frames. Then, I will be able to accept my situation once more, and keep moving forward. Of course, I know that disappointment comes in cycles, and acceptance doesn't last. So I don't expect to stay in this part of the cycle.

Misinformed

I received my DEXA results in the mail today. Apparently, the woman I talked to on the phone misread the results. I actually made very little improvement. I haven't heard from The Chiari Institute yet, but I am very doubtful that these results will qualify me for anything. But, here they are:

DEXA scan performed 1/14/09:
Lumbar Spine:
The average bone density of the L2-L4 region = 0.989 GM/CM2
T-score = -1.8
Findings consistent with Osteopenia.

Femoral Necks
The average bone density of femoral necks = 0.855 GM/CM2
T-score = -1.3
Findings consistent with Osteopenia.

DEXA scan performed 2/22/10:
Lumbar Spine:
The average bone density of the L2-L4 region = 1. 029 GM/CM2 (an increase of 0.04)
T score = -1.4
While the value has increased, the findings are still consistent with Osteopenia.

Femoral Necks
The average bone density of the femoral necks = 0.830 GM.CM2 (a decrease of 0.025)
T-score = -1.2
The value has decreased, but the T-score has not significantly changed, and the findings are still consistent with Osteopenia.


Basically, this means that I was misinformed. I was told that these T-scores were positive values, but they are actually negative values. That makes a huge difference. If the numbers were positive, I could reasonably be approved for surgery this spring. But with negative numbers and bones still osteopenic, I will have much longer to wait before surgery. There's no way to predict how much longer the wait will be at this time. But, just for fun, I would guess the earliest I could be tested again would be 6 months from now, in September. However, if I wait until November, it would be a full year of treatment. Either one of those is a possibility. Insurance may require that I wait until January. So even that is a possibility. At this point, my doctor has only prescribed 6 months of Forteo. Clearly, I will need more than 6 months of treatment to get my bones dense enough for surgery.

My plan right now is to see my endocrinologist as soon as possible to ensure that I continue Forteo. It would also be good to hear from TCI what numbers they are looking for me to achieve, so that I can convince my endocrinologist to continue with the treatment.

Either way, this is a considerable step back in my progress.

I thought that this leg of my journey, the waiting part, was almost over. I thought I'd be planning two trips to New York in the near future.

Instead, I'm facing many more months of the same. Waiting. Missing out on work. Waiting. Missing out on life. Waiting. Possibly delaying my wedding. More waiting. I just may be the most patient freaking girl in the world.