Monday, May 19, 2008

Back from New York with surgical info

Recovery from my gallbladder surgery is going well. Each day, my pain is a little bit better. I can even do a few sit-ups now! I don't know yet if I'll be able to expand my diet.

Last Wednesday through Friday, I went to Long Island for my pre-surgical consultation. My mom and my boyfriend came with me. It was a quick trip, packed with new information!

The first thing I did was get some scans done at Manhasset Diagnostic Imaging. The 3D CT scan is amazing! I'll post new pictures as soon as I can!

Next, we went to see Dr. Bolognese. He had tons of information for us. I'll try to include the main points here:
I still have signs of cranio-cervical instability. One of the causes is that I have osteopenia. This is a milder form of osteoporosis. Dr. B said that I have the bones of a 60 year old woman. :( The softness of my bones can contribute to a weaker fusion. In addition, I would probably benefit from further extraction and a lengthened fusion. (It would feel better if my skull were lifted further away from my spine.) However, Dr. B would like to begin with conservative treatment of this, since a fusion revision would be very invasive. This will begin with a consultation with an endocrinologist for treatment of osteopenia. This will involve taking medication and possibly some dietary changes.
In addition, I will be starting physical therapy for my cervical musculature and posture. I will start wearing a cervical-thoracic orthosis jacket for 6 hours a day! I will wear a new Aspen collar when in the car and as needed . I will also begin non-invasive cervical traction with a Pronex device. I'll be seeing an orthotist to obtain all of this.

I am still on track for tethered cord surgery. I will need just one more test to confirm it. I need to go to a local urologist to have urodynamics testing. I've heard from some chiari friends (and my TCI nurse) that this is a very unpleasant test. I'm especially dreading it, because I had so much trouble with my catheter during my last surgery. I've always had catheter problems, but at least I know now that I have an abnormally small urethra, which is probably why I've always found catheters to be so painful. So, this test is to check and see if my lumbar spine nerves connected to my bladder are working properly. It is expected that I will have at least some level of neurogenic bladder. This would confirm that the tethered cord surgery will help me.

After my appointment with Dr. Bolognese, I saw Dr. Kula. My advice to anyone seeing a neurologist at TCI is to make a headache journal, so you can tell them exactly how frequently you get each type of headache. Dr. Kula had several ideas, all geared toward treating my headache. However, I think I will look into these medications after my tethered cord surgery. It seems like a bit too much to deal with.

So, there are many appointments to schedule. I'll be very busy with doctors over the next few weeks. But everything is on track for surgery on June 26th.