Appointment with Endocrinologist 4/5/2010
I don't quite know how to explain what happened at this appointment. It didn't go well. It felt like an interrogation, actually. First, she asked if my surgeons were satisfied with my recent DEXA scans. I told her that I wasn't sure, but I thought that they wanted me to continue on the medication, since I am still in the range of Osteopenia. She said that this was ridiculous, and with any other patient, we would be celebrating right now. She said that she would not renew my prescription for Forteo any longer, because my bones are strong enough as they are, and no reputable surgeon would require them to be any denser. The interrogation began. She started asking me questions about the reasoning for each of my surgeries and what improvements I saw with each one. Then she questioned why I was having my current surgery. She told me she thought I should consider if I really needed the surgery, and getting a different surgeon. At the very least, she thought I should see a neurosurgeon that she recommends for a second opinion...a neurosurgeon that doesn't even specialize in Chiari, much less cranio-cervical instability and fusions. Before I could even ask her the rest of my questions, she walked out of the appointment, not to return. It was completely condescending and rude. I felt like I'd been slapped across the face. At the same time, I wasn't surprised. I've been through all of this before. It's just been a while.
I did learn one positive thing at this appointment: I asked her if my salt intake was affecting my bones, considering I take salt tablets regularly, so I get more than the average recommended amount. She said that all of my tests showed normal amounts of sodium in 24-hour urine samples, and I don't need to worry about my salt intake at all. YAY!!! My body simply metabolizes much more salt in a day than a normal person, so the salt doesn't leach calcium from my bones. So, as long as I don't take more than I feel I need, I'm fine. I know I was taking 5-6 tablets a day when I had those tests done. So that should be a safe amount for me.
I am not certain if I will return to this endocrinologist. I may need to find a new one to prescribe Forteo, which I know won't be easy, from experience. But I will wait for now.
Appointment with Dr. Grubb 4/14/2010
My appointment with Dr. Grubb was excellent.
He is unhappy for me that I need another surgery, but he is in support of the surgery, and expects that I will see some improvement in POTS symptoms from the surgery. It seems we have come to the understanding that my POTS symptoms will never be cured. But he says that if the surgery helps, then the symptoms will be easier to manage with medications.
Surgery recovery is expected to cause another large setback in POTS symptoms. There is simply nothing to do about that. But if I am struggling a lot, I should consider contacting him. Perhaps to consider IV fluids to get me through the rough time.
Exercise is still Dr. Grubb's number one concern. He suggested a recumbent bike for ongoing cardio exercise. We are looking into buying one used. They are quite expensive. But if we can find a good deal, it may be a possibility. I'm also supposed to walk around the house wearing ankle weights to build up leg strength. We'll see how that goes.
He's changing my dose of Midodrine a bit. We're going to try for higher doses with breakfast and lunch to see if I can be active earlier in the day. Usually, I cannot walk around until after dinner pills.
Finally, he wants me to add a couple of supplements. He wants me to be taking D3 in liquid form instead of solid form. Also, I'm supposed to look for a flavored liquid fish oil supplement. That sounds absolutely disgusting to me, but I guess I could try it. (I'm particularly picky, so I'm really not sure if it will work out...)
Upcoming Appointment with Dr. Bolognese 6/18/2010
I have an appointment set to see Dr. Bolognese in New York. Here is what I know about it:
The surgical committee did NOT deny my ICT (Invasive Cervical Traction) because of bone density. They did not believe there was enough evidence showing I was a good candidate for ICT.
So, protocol states that to qualify for ICT, I need to have a consultation at TCI (The Chiari Institute) with new imaging and new testing showing that I have symptoms of cranio-cervical instability/cranial settling.
After the appointment, the surgical committee will vote on ICT again.
If they determine me to be a candidate, I will have ICT.
If the ICT is positive, the surgical committee will vote on surgery.
If they determine me to be a candidate, I will have the cranio-cervical fusion revision.
It's a TON of red tape, but it's the only way that I will have this surgery. And it's the only way that they can be absolutely certain that I need this surgery, and that this surgery will help me.
So, this is the way it needs to be done.
It's a long, long, long road since that first surgery in 2002.
This time, I'm hoping to recover from surgery in time to have my wedding in the summer of 2011, whether or not I have hair!
