UCLA Visit

Hello peeps!

*Exact surgery date is not known at this time, but they are thinking at the end of July, early August.

 First and foremost, a little background on the UCLA doctor. Dr. Hornicek and his nurse, Al, have been working together strictly on Chordoma for over 20 years. They were at Mass. General hospital for many many years, and then came together to UCLA to start the Chordoma program less than a year ago. Let me just say that these two, Al and Dr. H, are a Chordoma-surgery-dream team. This is all they do. Not just surgery. Not just bone cancer surgery. But Chordoma surgery only. That is and has been their entire focus for the last 20+ years. So they, along with other specialists, have fine-tuned this surgical procedure to avoid any type of complications that come up. Dr. Hornicek (let's call him Dr. H) mentioned performing at least 300 of these surgeries, and he has performed more than any other surgeon in the U.S.! Worldwide, only doctors in China (because of their population) have performed more of these surgeries. So, not only am I in expert hands, I am in the hands of a foremost internationally recognized Chordoma expert. People fly from all over the world to see him, and I just had to drive for two hours. That is amazing!

During the visit, which lasted 2.5 hours, Al and Dr. H went over the details of my surgery, which is quite extensive. It's actually going to be two surgeries. This is the gist of what I gathered from my visit. Some of the tiny details may be a little off, but it was hard to write everything down.

• The surgery consists of a team of Dr. H (orthopedic surgeon), a general surgeon, a spine surgeon, and a plastic surgeon
• First incision in the front to tie up the blood vessels (to avoid blood transfusion and massive blood loss) and start cutting/preparing the sacrum from the back. They will also remove muscle from my abdomen to fill the void of taking out the sacrum (something of that sort) This surgery will last 4-6 hours. 
• 3-5 days later (after the wound in the front heals), they will flip me over and do the second, more extensive surgery in the back. They will remove most of my tumor and anything that is involved including most of my sacrum, any nerve roots that are involved, and leave whatever they can. They need to be sure to remove the entire tumor with wide margins, taking with it whatever's necessary. I asked Dr. H if he could save my S2 nerves. He gave a roundabout answer that mostly seemed to mean "most likely". On whether he could save the S3 nerves, he mostly said no. He reiterated his main objective is to save my life. I then told him that I didn't care about that, I just wanted him to save the nerve roots haha. Everyone laughed. Mostly he was saying that you cannot always depend on the MRI. He'll have to wait until he's in surgery to truly see what he can save. The surgery also involves a bone graft, and hardware that screws into my pelvis, to avoid sacral insufficiency fractures in the future. There's a lot of other mechanical things that they mentioned that I don't understand very well yet. Like why do they need to take muscle from my front and for what? And while plastic surgery is there, can he take out some fat and give my a tummy tuck as well while he's at it?? Lol. This surgery will last 8-10 hours. 
• I will be in the hospital for an estimated two weeks, and another two weeks after that in a rehab center. 
• The most surprising thing to me: I will need to get cleared to sit, and I will not want to sit for 3-6 months following the surgery. I will be able to sit on a toilet they said, but sitting will be painful for me for a while. Basically, Dr. H says, I will feel like a grenade went off down there. Yikes! 
• Another surprise: I will most likely be using a walker for 3 months or so after the surgery. 
• Most patients need their narcotic pain meds for about 6 months following surgery. 
• One of the scariest things about this type of cancer is its high re-occurance rate. The best chance of beating this cancer is to get ALL of the tumor surgically, not leaving even one cell behind to wreak havoc. But Dr. H has a 0% re-occurance rate!! That was incredible to hear. That as long as there are no metastases (in the lymph nodes or lungs) prior to surgery, according to those statistics, I have a 100% chance of being cured, one-and-done. 
• As far as activity level goes, Dr. H says he normally tells patients that they will only be limited in high impact activities. But he recently changed his mind with one patient who after a year was doing high intensity workouts in the gym and sent him videos of his workouts. He also mentioned a Marine who after six months was able to go back into active service. I also spoke online with another guy who had this surgery and told me that he did Crossfit 4-5 times a week. (Wow!) I have hope. Not that I'm into Cross-fit, but just knowing of these cases helps me feel like this surgery will not be the end-all of my athletic interests. 
• My overall thoughts on the experience. 
• I am SO happy to be in good hands. I know that if there is a nerve root that can be saved, he's the guy to do it. If he can't, I won't question it. If I need to have hardware, it's because they have tried it without, and it works better this way to avoid future surgeries and painful fractures, etc. 
• Recovery: It's going to be tough! (Not wanting to sit for 3-6 months? A walker for 3 months?) But I'll get through it. I have my family and my support team who will get me there. 
• I'm sooooo glad I didn't go with the Kaiser Dr. (more on that below) 
• Kaiser Doc vs. UCLA Specialist: 
• Kaiser doc was nice, had great bed-side manner and has a great reputation as a spine surgeon. He had done a few Chordoma surgeries (I'm guessing 5 in a 30 year career-span). 
• Kaiser doc's approach to my surgery: Go in through the back only. Take out the tumor and whatever was necessary. Sow me up. It's easy! It would be him and another spine surgeon. He told me in the pre-op that I would be surfing in a month!! There was no hardware, no bone-grafting..It was so simple, yet when he said "surfing in a month", it felt...so NOT right. 
• I was so close to going with this doctor because he denied my initial referral to be seen by a specialist. I'm glad that he granted my request in the end because otherwise, he would have performed the surgery and I would have had no idea of what was to come in terms of recovery, and I probably would have had to have multiple surgeries after that and it could basically mean the difference between having a re-occurance or not. In other words, the referral to see the specialist probably saved my life. I will probably never know, but my gut knew that this was not the right guy for the job. 

Anyway peeps, the bottom line is: I'm in expert hands and I'm happy about that. It's going to be a long and hard recovery, but I'll do my best. Everything feels RIGHT with Dr. H. There are no doubts. I have full confidence in this guy, and I'm so blessed that he's close, and I have all your support. Because of that, I'm not worried! Like I've said from the get-go, "Everything is gonna be OK, no matter what".