Thursday, May 29, 2008


My gallbladder recovery is going really well. My digestion is improving so much. I believe that I am still lactose intolerant, but not completely dairy-intolerant anymore. I still won't be eating much fried foods, and I haven't tried red meat. But I'll be experimenting.

Yesterday, the day of wisdom tooth extraction, was a tough one. The trauma to my jaw area made my headache almost unbearable. Also, I took a Dilaudid for pain first, and it actually did nothing! When I switched to Vicodin, it got much better. So, I guess different pain meds work for different kinds of pain. Unfortunately, with all of the narcotics, my digestion has halted. But I won't worry yet, because I didn't eat any solid food yesterday. Today, I'm going to try out some muffins and some macaroni and cheese--yes, cheese! What a convenient time to be able to eat lactose-free dairy!

So, today is much better than yesterday. And I'm ready to start thinking about the big surgery again!

Wednesday, May 21, 2008

New Schedule- lots of appointments

Today, May 20th: Orthotist, fitted for new aspen vista collar

May 22nd: Dr. Kwon, urologist, for urodynamics testing

May 23rd: Dr. Johnson, dentist, to fix the chip in my tooth (that happened when I was intubated a couple weeks ago). Also, Gus' ACL replacement surgery happens this day.

May 27th: Orthotist, fitting for CTO jacket; also this day, Dr. Guske for gallbladder follow-up

May 28th: Dr. Gauthier, wisdom tooth extraction (I won't be asleep!)

June 10th: Dr. Jobski, cardiologist, for EKG and cardiac clearance

Still need to schedule appointments with:

Endocrinologist (for osteopenia treatment)
Physical therapist (for cervical musculature strengthening)
Opthalmologist (to check my blurred optic discs)

It's all a bit overwhelming. And I hate doctor's offices. But, I love my new aspen collar!!! It's so supportive. New pictures to come, if I ever get around to it.

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.

Sunday, May 11, 2008

Back...without my gallbladder

Well, my laparoscopic cholecystectomy was Friday night at 5:00. That evening went pretty well. My family was there, and they were all so great and supportive. I am truly lucky to have each and every one of them.

Due to my cranio-cervical fusion, I cannot be intubated the regular way, because my neck cannot be hyper-extended. But during this surgery, you have to be on a ventilator, because they fill your abdominal cavity up with air, so there isn't room for your diaphragm to extend. So, they performed a fiber-optic intubation. But I have a small airway, so they had some trouble getting it in. They chipped my front tooth a bit. I have some scrapes in my throat. And my vocal cords are very sore, so it is hard to talk.

Friday night was pretty hellish. I couldn't sleep from the pain. I was itchy and nauseated from the pain meds. And worst of all, I couldn't urinate, so I had to be catheterized. Unfortunately, the catheter was two sizes too big, so it took many tries to get it in, and I was screaming in pain. My bladder and urethra were on fire until they took it out on Saturday afternoon. Luckily, I was able to pee on my own after that, so they set me free at 7:00 Saturday night!

The best news is that my gallbladder was apparently FULL of gallstones--hundreds of gallstones. It was also very inflamed. They had to enlarge the incision to make room to remove it. So, it is expected that I will experience a great amount of improvement in my digestion. For now, I'm eating tiny meals of soft foods, because it hurts to digest. But eventually, I may not need to be on such a restrictive diet.

So, I'm on the road to recovery. Most of my current pain is from the fact that they stuck a needle through my navel and blew me up like a balloon. So, I'm very "full". But, once this problem gradually relieves itself, I expect the recovery to be pretty easy. It's just pretty painful to move right now. And it's sad that they cut through my super strong abdominal muscles that I've been working so hard on. I can't even sit up unassisted right now.

But things are getting better, slowly but surely. And I should be well enough to fly to New York on Wednesday!

Thursday, May 8, 2008

Schedule (updated)

My gallbladder removal surgery is on Friday, June 9th at 5:00. I'll be at Northwest Community Hospital. The procedure should take about an hour. In preparation for the surgery, I am fasting for 24 hours and taking laxatives so that they will have room to maneuver in my abdomen. They will also inflate my abdominal cavity like a balloon so they have room to work!

Next week, I'll be going to New York for testing and pre-surgical consultation with Dr. Kula (neurologist) and Dr. Bolognese (neurosurgeon). My mom, Gus, and I will be flying to New York on Wednesday, May 14th. All testing and appointments are on Thursday, May 15th. We'll be flying home on Friday, May 16th. It will be a short trip, but should be very productive.

On May 23rd, Gus will be having his ACL repair surgery. I hope to be able to help him through this time.

On May 28th, I will be having two of my wisdom teeth extracted. They are both currently partially impacted, which is not a good condition to be in when you are having invasive surgery. I need to have these removed to prevent infection.

The next few weeks will be spent helping Gus through his physical therapy.

I will return to New York on June 23rd. I will have pre-surgical testing on June 24th and invasive cervical traction on June 25th. My tethered cord surgery is scheduled for Thursday, June 26th!!!

I was hoping to have everything done sooner, but I'll just have to be patient. It will be hard to wait all of June for the surgery. I don't know what I'll do all month!!!