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Thursday, November 19, 2015

cervical fusion & craniectomy update

It's been about 2.5 days since my surgery and I'm finally feeling good enough to open my computer for a quick update. Before I get to that though, a HUGE thank you to everyone who's sent their well wishes my way over the last few weeks and days. Friends, family, Craig's coworkers, everyone near and far...I (we) have been so grateful for everyone's love and support. And a very special thank you to Tino and Angelika at Quality K9 for taking such great care of Charlie while we're gone, and sending us lots of photos of her practicing "snuggle" for when I get home and need it the most :)

Surgery really went as well as it could have gone Tuesday morning. I'm in a fair amount of pain right now, but nothing that shouldn't be expected. A lot of the pain is just from the incisions themselves, but some is from a spike in my headache from all of the inflammation going on from surgery. That sounds a little discouraging, but I've been assured it's nothing to be concerned about. It will probably take a few weeks for everything to settle down.

But I'll back up a few days. Craig and I arrived in Tampa on Sunday night and my mom flew in on Monday morning. Monday was a full day - first I was scheduled for another digital motion x-ray (DMX), then we had to drive across town for another upright MRI, and then had to go back to Dr. Franck's office for my pre-op appointment. I don't have a copy of the DMX video yet (I'll post it here when I get it), but the findings were even worse than my original study showed 2 years ago. The DMX showed 7.5 mm of excursion on my right side and 10 mm on the left. To give you some context, 0-2 mm is considered "normal" and anything over 3.4 mm is considered a surgical candidate. Dr. Franck said that this was probably the worst instability he's ever seen...so severe that there really wasn't any more room for my C1 to move. In side bending, it was sliding all the way over until it hit the dens of my C2.

My upright MRI showed a disrupted transverse ligament and a capsulo synovitis at C2 against my brainstem (made worse with flexion). It also showed a tonsillar ectopia, where the bottom of my cerebellum was crowding my brain steam and basically jammed up against my skull, restricting the flow of my cerebral spinal fluid. I'll come back and add some of these images when I get a copy. So by the time Monday night rolled around, we were obviously feeling even more confident that the C1/C2 fusion (to correct the instability) and the craniectomy (to stop the crowding of my cerebellar tonsils and brain stem) was the right thing to do.

Tuesday morning, we arrived at the surgical center at 6am, and I was in surgery by about 7:30. We were told the procedure typically takes about 4 hours (a big chunk of that time used for the placement of my body (face down and held in place by placing screws into the side of my head - one on one side and two on the other) and the alignment of the intra-operative CT scanner radar system (ie. Stealth). But, the surgery went so well that it only ended up taking them about 2.5-3 hours total. As is pretty much always the case when having surgery, I knew that the healthier I went into it, the easier every part of my recovery would be. That definitely motivated me to keep working out as best I could until this past weekend. In fact, I set a few PRs in the gym over the last few weeks - a seemingly insignificant victory, but every mental win going into this surgery has helped me maintain a positive mindset.

So here I am before heading into the OR.

To give a recap on the actual procedure, Dr. Franck and his team made a small incision at the top of my cervical spine, below my skull, and then two small insertion points at the base of my cervical spine. Two 4 mm diameter titanium screws were guided from the insertion points to connect C1 and C2. Then, two square cm of bone from my occipital skull base were removed. In addition to the screws, they also added bone matrix material (with stem cells from a donor), directly on C1 and C2 to help create a bony fusion. Waking up from surgery is still pretty hazy, since I was on quite a few different drugs, but after just a few hours in recovery, we left the surgical center to go back to the hotel. They sent a nurse who stayed with us for the next 24 hours in the hotel and monitored me overnight. The surgical pain wasn't actually as bad as I was expecting, though last night and this morning were a bit worse than the first night. Right now, I'm on Oxycontin (for pain), Norco (for pain), and Flexeril (a muscle relaxant), plus taking a few natural anti-inflammatories like high-dose curcumin and tart red cherry juice.

Wednesday morning, we went back to Dr. Franck's office for my bandages to get checked and changed. I woke up from surgery with my neck brace already on and it only comes off for a few minutes after taking a shower so the pads can be changed - which I've only attempted once so far (not so successfully). I also had x-rays taken again to make sure that everything looked the way it should (which it did!)...you can see here the 2 screws and what my incisions look like (and also my sweet new buzz cut).

On Wednesday afternoon, Craig, my mom, and I drove down to the condo we rented in Siesta Key. The plan here is just to relax, relax, and relax some more until December 3rd, when I see Dr. Franck again before flying back home. My pain seems to be fluctuating a bit...going from a high headache and low incision pain to worse incision pain and a lower headache. For now though, I'm just trying to keep the pain under control with the medicine and take each day at a time. I also have to wear an electrical bone growth stimulator for four hours per day, which just sits around my neck and helps the healing process. Tonight we even got out for a short walk on the beautiful white sand beach!


  1. Katie, what an incredible recounting of your surgery and of your last two days post op! By virtue of the telling, you seem to be well on the mend. Happy, happy, happy for you! Godspeed. To a happy head! My heartfelt kudos to you for enjoying life (despite its hazards and pain), to persistence, determination, and a positive spirit. So happy to see this photo of you and Craig. xox, Sue

  2. Sounds so positive so far Katie, keep up the good work and be relentless in eliminating the pain and restoring yourself to normal function again! Go Team Katie!!

  3. Hi Katie,
    My name is Lisa and I also have C1/C2 Instability. II've been following your blog for quite some time now and can't believe how much our stories are so similar! Your blog is WONDERFUL!

    I have tried many of the same alternative treatments as you, also without success.

    I started seeing Dr. Hauser last December, 4 months after my 2nd car accident. After 5 PRP prolo treatments, I was out of the hard collar and doing much better but then was involved in another rear-end collision which put right back into unbearable headache and neck pain mode!

    I'm now back in the hard collar and have had 4 additional treatments heading to Florida next week for #5. I'm trying my best to avoid the fusion at all cost.

    My email address is lisapnash@gmail.com. I'd love to chat and compare our stories in addition to being support for one another. My boyfriend has been a wonderful support every step of the way, but no one really understands what it feels like to have this issue with its associated symptoms.

    Wishing you the very best rand speedy recovery and check up in Florida this week. Looking forward to hearing how you are doing! Would love to hear from you.
    All the best,

    1. Thanks for your note Lisa - I just emailed you!

  4. After the surgery of neck and the spine we need Physiotherapy North Ryde as it helps us to cure our diseases or instability from which i suffered this therapy dis after the surgery or any other accidents and give us relief and hope to fight with our curse and instability and this special treatment is done by the doctor called chiropractor.

  5. Hi can you tell me how much it cost for the operation .