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Thursday, January 7, 2016

7 weeks post-op

I'm 7 weeks (and 2 days) post-op and figured it was time for another update. I guess I had sort of been waiting for a big breakthrough moment in my recovery before a new post, but decided a new year was reason enough. And I have been pretty busy at work trying to become pain-free, so here goes...

Actually - first, to balance out the highly impersonal anatomy diagrams that fill the rest of this post, a late happy holidays and new year from Craig, Charlie and I.


You'll notice I'm sans-neck brace when this photo was taken on our front porch on Christmas day, which just means it was preceded by...me convincing Craig I needed to take it off because despite him telling me that he only thinks happy, healing thoughts when he sees me in a neck brace (have to love him for it), there was no way I was taking a family picture with it on...and proceeded by me strapping the hard collar back on as fast as possible without moving a muscle. Hah!

And here's our Charlie girl posing in front of the tree.


And my 3 most effective forms of medicine on New Year's day: hiking, Craig, and my pup.


Now the pain update: Headache is still here. I've had a few less-than-normal pain days and a few worse-than-normal pain days, but for the most part, a lot of normal pain days. As I explained in my last post, I do really still feel like it's coming from the soft-tissue (versus the area around my C1/C2 instability that I felt prior to surgery). And I'm still choosing to interpret that as a POSITIVE sign.

Just over two weeks ago, Craig and I flew back to Tampa for my 6-week follow-up with Dr. Franck. Man, I am so over flying to Tampa. I had x-rays taken here in Arizona that Saturday so they were ready for Dr. Franck to review by Tuesday morning when we met. Getting the x-rays felt like a big step because my hard collar came off and for the first time since before surgery, I had to move my neck around to get the different views. It wasn't particularly painful, but very stiff.

After looking at the films that Tuesday, Dr. Franck told Craig and I that he was happy with how I'm healing (which is awesome). You can see the placement of the hardware in the pictures below, and also the white kind of blurry area between C1 and C2, which is the matrix of new bone growth from my donor stem cells.





I got the go-ahead from Dr. Franck to transition out of the hard collar and into a soft collar. As uncomfortable as the hard collar was, it really hadn't bothered me a whole lot since waking up in it on November 17th. Maybe it was just the conscious decision from the start that I wasn't going to let it bother me (because how miserable would that be if I had woken up every morning for the last month and a half obsessing over how uncomfortable a brace was?)...or, maybe it was because the brace felt like it was part of the solution and therefore something I couldn't hate...or, or maybe it was because my headache has been bad enough since surgery (and the 3.5 years prior to surgery) that it just hasn't allowed the inconvenience of a neck brace to qualify as discomfort (if that makes sense). Don't get me wrong, though, it did feel damn good to take off, especially because it meant I could finally take a shower without a brace on my neck. I think I may have taken 30 minute showers for the first few days after that. Also, I can drive now!

So back to my pain. My biggest concern at this point wasn't that I still have my headache (recovery is a process, I get that), but just that my recovery (at least pain-wise) seems to be taking longer than most people who have had this procedure. In the literature Dr. Franck's published, headache intensity was reduced on average by 96% at the 6-week postoperative interval.


(This is from The Craniocervical Syndrome and MRI)

When I voiced my concern about this to Dr. Franck, he agreed that I was definitely taking longer than most patients to experience a reduction in my headache, but also said that like Craig and I (and all of the therapists I've seen in the last 1.5 months, he's encouraged about the changes I feel in the SOURCE of my headache. He told me to start a few isometric strength exercises (literally just resisting the push of my hand into my head in 6 different directions) and gave me the green light to start a bit more structured physical therapy (without coming out of the soft collar though). He also instructed me to continue wearing the bone growth stimulator around my neck four hours per day for another 4 months. I'll have new x-rays taken in February before I come out of the soft collar (about 5 weeks from now), which he'll be able to review without us having to travel back to FL (!!!), and then we'll fly back at the 6-month post-op mark (May) for another visit.

SO, that went about as well as it could have. Now the question of how to keep doing everything I can to keep moving in the right direction and hopefully start feeling some substantial relief soon...

I've been seeing a physical therapist, Kara, at EXOS about twice per week for a few weeks now. She's been dry needling my upper traps to try to break up some pretty serious knots, and doing some light massage on my scalp and around my incision to help with the scar tissue. Next week, I'll start a once-weekly appointment schedule with Jeff Beran (the PT I've seen in the past) and will gradually be able to start transitioning to some movement-based rehab. I know my neck is really weak right now, and I know that weakness causes tightness and tightness causes pain, so hopefully I'll be able to start breaking that cycle and address some of the other dysfunction I have going on in my movement mechanics. I'm also looking forward to him using the K-laser on my surgery site. I seemed to have a better day following some laser treatment with him a few weeks back. The laser uses specific wavelengths of light to increase circulation and decrease swelling, inflammation, and scar tissue formation.

And on Tuesday, I saw Veronika Campbell, another PT I've worked with on and off over the last few years, who specializes in manual therapy, neural, and visceral mobilization. She worked on the link between my ophthalmic nerve and greater occipital nerve at the coronal suture where they together. This felt really good because that area of my scalp (shown below where the coronal suture is) is very tender/tight feeling. I can't find a great diagram to show both of these, but the red line on this image indicates where they come together at the suture line.


She also worked on the attachments of my falx cerebi (a small sickle shaped fold of dura mater that you can see in the diagram below) into my cranium...


...and the fascia at the insertion near the jugular foramen and the suture (look about half way down the right side.)


Lastly, she did some nerve mobilization to the accessory and dorsal scapular nerves.



Sorry the image overload, but if you're a visual person like me, maybe that's helpful.

I had been having a pretty strong flare up in pain on Monday and Tuesday, and since Tuesday (when I had PT at EXOS in the morning and PT with Veronika at night), that seems to have settled back down. The spike in pain was probably my own fault - I think I had done a little too much workout-wise over the weekend, including a few things I'm probably not ready for yet (like versa climbing and pilates arm work). Live and learn.

So there's the update. Hoping that next week is better than this one and the week after that is better than next.

Someone asked me the other day during my workout if I've gotten used to being in pain. A valid question, but a tricky one to answer. After having a 24/7 headache for somewhere between 1,000 and and 1,300 days in a row (I'm not sure the exact date they transitioned from intermittent to constant), yes, I have gotten used to it. Of course my threshold for pain has increased (how could it not?) But, (and I think about this often), If I didn't have the headache I have now and I just woke up one morning with this headache and knew it would be gone the next day like most headaches are, I would stay home from work. I would skip my workout. I'd ask Craig to take Charlie for a walk and to pick up dinner on his way home. I'd lay down...maybe watch some TV. Basically, it'd be a bummer of a day. When that becomes your everyday reality, though, you have no choice but to get better at dealing with pain...to go on with life with the most positive attitude you can muster. But becoming better at dealing with it doesn't make the pain hurt any less. I hope that makes sense. And THAT is why I'm ready for this thing to be gone for-ev-er.

Almost done. Here's one final picture of what my scars look like today. They're definitely healing well, and as more time goes by, we'll be able to get a little more aggressive scraping them to help break up the scar tissue. For now, it's mostly light massage and pinching the skin around the incisions. My beautiful buzz cut is growing out quite nicely too.


Lastly - Over the last few months, I've had quite a few people send me emails who are on similar headache paths and have come across my blog in their quest for answers. When I started recording my story over two years ago, I never imagined there were so many people out there, in pain, asking the same kinds of questions, seeing the same kinds of doctors, trying the same kinds of treatments, and facing the same roadblocks along the way. I didn't think it was possible to feel more motivated to get rid of my own headache until hearing the stories from strangers who I share this journey with. So to all of the people who have communicated with me after reading this, thank you. It's pretty amazing how impactful the support of strangers can be and I hope my story (which is not over yet) can provide the same kind of inspiration to you as yours have to me.

4 comments:

  1. Hi Katie: I have had a similar path to you. An athletic woman almost destroyed by headache. But in my case I finally found the source of my upper cervical pain and headache - I had 2 unstable shoulders which probably caused TOS bilaterally. In any event, after having both shoulders stabilized AND have both 1st ribs resected and bilateral scalenectomies, I am headache free. If you are interested in my 5.5 year path to this point, I would be glad to discuss it. I have had similar treatments to you to this point in your path. GOOD LUCK - I can empathize! Alison

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  2. I should add that everything I had was from soft tissue (causing the headache) - traps and scalenes. If you look at the referral of a upper trap trigger point it is behind the ear. Because my shoulders were so unstable, the trapezius muscles were on 24/7. In any event, I too thought everything was from my upper cervicals when indeed it wasn't.

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    Replies
    1. Hi Alison - Thanks so much for reaching out to me and sharing a bit about your own journey...AND congratulations on successfully chasing down the root cause and becoming headache-free. I just can't even imagine how incredible that must feel. I do have a few questions for you, if you don't mind - and definitely plan to chat with my physical therapist about this when I see him in a few days.

      From what I've read about TOS, it seems like pain/numbness down arms, impaired circulation, etc. can be common symptoms (along with headache). Did you have other symptoms like this besides your headache? I definitely have a lot of issues with my scalenes (and of course, traps) but haven't ever really considered that it could be coming from the bottom up, rather than the top down.

      Was your headache affected by positional changes or overhead movement? As you probably read if you've looked through my blog, I have severe chronic tightness through my traps, SCMs, scalenes, but my pain isn't changed with any change in position or movement. Just curious if this was the case for you too.

      I'm assuming, given the procedures you mentioned, you were seeing a pain doctor of some kind who finally diagnosed this or was it a PT?

      Thanks again and look forward to hearing from you! Feel free to shoot me an email if that's easier: kathrynLdalton@gmail.com

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    2. Hi - I just emailed you - you may want to look at your junk as I am using a hotmail address. Alison

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