2 weeks post occipital nerve decompression and excision

As of yesterday, I'm officially two weeks post-op so time for an update!

I wrote my last post the night before surgery (probably while eating an entire Monday worth of calories...fasting is not my strength). At that point, we knew that Dr. Peled would be going in and looking at each of my greater occipital nerves (GON), lesser occipital nerves (LON), and third occipital nerves (TON) and would be decompressing or excising (cutting) depending on the extent of damage. To recap, the compression points that he'd be identifying is a result of scarring and inflammation around the nerves and the tunnels through which they pass (very likely a result of my initial whiplash/head injury in 2011) Decompression consists of cleaning up and removing that tissue in order to restore the integrity of those nerves and surrounding tissue.

This image from Dr. Peled's presentation shows potential occipital compression points.

I forgot to include this is my last post, but I think universe delivered me a sign (literally) the day before surgery. I had gotten a quick lift in at the hotel gym on Sunday morning, and decided to finish my workout with some stair sprints. Not expecting to find anything or anybody in the dingy Hilton stairwell, I turned the corner from the 9th floor to the 10th to find this sign staring back at me.

I mean, it's clearly part of an hotel employee wellness program, but still! Right??

Okay, back on track. So we arrived at the surgery center in Walnut Creek on Monday morning. Dr. Peled came into pre-op to review the plan with Craig and I and answer any questions we still had. He explained that he'd be reopening my my old C1/C2 fusion and craniectomy incision (which he'd do an even better job of closing back up - that's a plastic surgeon for ya!), and making two additional incisions on the side. Unlike my last surgery, he actually shaved the back of my head while I was still awake. At that point, I don't remember feeling nervous...just anxious and ready to get this thing done!

Headed into surgery

Surgery took somewhere between 2.5-3 hours, though it took me quite a long time to wake up from anesthesia so it wasn't until 5:00 pm or so that I was finally alert enough in recovery to ask Craig exactly what he had done. (Actually, I think my very first words - sometime before that in my hardly-semi-conscious state - were "Was it the right thing to do?") I remember him assuring me that it absolutely was, so I drifted back into my drunken slumber for a more hours. Eventually, I learned that he performed a decompression of my GONs and LONs on both the left and ride sides, but my TONs were not salvageable by decompression so he needed to cut those and bury them into the muscle. I was hoping there might be some photos from the procedure, but it's probably a positive that he didn't need to take any because that means that my anatomy was pretty textbook.

I'm a very visual person, so in case you are too - I pulled some screenshots off of this video (Ziv Peled - Update on the Surgical Treatment of Chronic Headaches) so you can get an idea of what before and after a nerve decompression actually looks like. In the first photo, you can see the beginnings of the TON, which is surrounded by a bunch of a white, thick fibrous stuff (that's scar tissue).

In this next photo, after he has released and removed that scar tissue, you can see that the nerve has a lot more room to move. In the video, he also points out how you can see the posterior border of the sternocleidomastoid muscle a lot more clearly, as well as the tunnel (soft fat tissue) through which nerve can more easily passing through.

After getting a bar in me (I think part of the reason I was struggling was that my blood sugar was so low), I was feeling good enough to get in a wheelchair and be taken out to the car. On our way back to the hotel, Craig and I stopped at Whole Foods (because of course) to stock up on the essentials. It seems like it would have been a good idea to do this beforehand, but I never know exactly what I'm going to feel like eating after surgery. This time it was lots of pineapple (rich in bromelain, which is great for inflammation), bone broth chicken soup, salmon and veggies, cashew milk yogurt with added protein and extra collagen powder that I had packed from home, blueberries, and kombucha. Nothing out of the ordinary from my normal anti-inflammatory diet, but I try to always up my intake of probiotic-rich foods when I'm on an antibiotic (which is necessary after this kind of surgery).

The reason I'm even bothering to bring up post-op nutrition (not to mention pre-) is that I think it plays a HUGE role in your body's ability to recover from the trauma of an operation and unlike what happens in the OR, it's something that is 100% up to you, the patient, to control. There's no way that the overly processed and nutrient void Saltines, Jello, and Gingerale at the hospital can provide the nourishment that your body so desperately needs for optimal healing. And if you're going to such great lengths to end your suffering and regain your life, you may as well do every little thing you possibly can to give your body the best fighting chance.

This photo was taken on the night of surgery. My sutures are dissolvable and the incisions were covered with just steri strips, which would fall off about 9 days later. 

At this point in the evening, I was feeling pretty good. Tired, but I surprisingly had NO incisional pain and I could already tell that the occipital region of my head felt different in a very good way. We had pain meds prescriptions already filled (and I wasn't opposed to taking them) but I ended up never needing to, which was a huge bonus. Dr. Peled called to check in on me later that evening, and we spent the rest of the night just relaxing in the hotel room. On Tuesday, we left Walnut Creek to drive back into San Francisco, where we would spend out last night before seeing Dr. Peled at his office in the city on Wednesday morning before flying home. We reviewed my recovery timeline, which basically consists of laying low for about 6 weeks (no strenuous activity, no lifting anything heavy, etc.) Compared to my last surgery - which required complete immobilization in a hard collar for 6 weeks followed by a soft collar for 6 more weeks, plus this super uncomfortable bone growth simulator that had to be worn 4 hours per day for six months - this recovery seems, in many ways, like a piece of cake. After watching me walk into his office and subconsciously moving my body like I was wearing a neck brace, Dr. Peled even reminded me to keep moving my neck (only through range of motion that was pain-free, of course). It's important as the nerves heal that they continue gliding.

And he was happy to hear that I was feeling so good, but reminded me that nerves don't heal overnight and there would very likely be some ups and downs to my recovery, so not to get discouraged if I started feeling more pain or different pain as the days and weeks progressed. It could take several months for things to really settle down; a reality that has been echoed by many fellow ON patients in these FB groups: Occipital Neuralgia and The Nerve Center: Decompression and Excision Migraine (& ON) Surgery. So I made the decision early on that I would just take things one day at a time and continue to remind myself that a worse day wasn't indicative of the big picture path I am now on (a message I have probably relayed to every friend/family member who has asked me how I'm doing over the last two weeks).

Pain-wise, the first 6 days or so after surgery were the best so far. We had a trip to Idaho already scheduled for the day after returning from San Francisco, and I was even feeling up to traveling. Granted, recovering with a view never hurts.

The past week has been quite a bit tougher though with pretty substantial head pain, though it's not the same as "normal." I still have complete relief in my occipital/upper cervical area where I was feeling those focal points and "drivers" of my headache, which is obviously a huge deal and the number one reason I'm optimistic. My scalp itself is still quite numb (more so on the right side) and I experience periodic sensations throughout the back of it, including what can only be described as a vibrational pulse, itchiness, tenderness, etc. (all classic nerve regeneration symptoms).

Day 9: steri strips fell off 

The hard part is the pain I'm feeling in the front - above my eyes, across my forehead, and temples (which I am used to feeling, but it doesn't make it any easier). On top of that familiar pain, it sort of feels like someone hit the top of my head with a hammer, so I'm spending a lot of the day with an ice over it. I suppose there's always a chance that my headache has additional nerve trigger sites (like my supraorbital nerves) but there's no point of even thinking about that right now because these frontal referral pain patterns I'm experiencing aren't unusual after occipital decompression. It could take months for everything to calm down. (Hopefully it happens sooner than that, but I'm prepared for either scenario.)

These photos were taken this morning, 15 days post-op. I'm pretty amazed at how well my incisions are healing! 

I have a phone call scheduled with Dr. Peled in a week (at 3 weeks post-op) and then again at the 6-week, 3-month, 6-month, and 1-year mark. So for now, I'm continuing to take it easy, icing, going for walks, spending about an hour a day in the infrared sauna (I waited until my incisions were closed), snuggling with Charlie (my tried and true best medicine) and practicing the always-easier-said-than-done art of patience.

occipital nerve decompression surgery tomorrow!

I'll make it short and sweet...because tomorrow is a big day!

In case you missed my last post (read it here), Craig and I flew to San Francisco a few days ago to meet in person with Dr. Peled (Peled Migraine Surgery). After having consulted with him over Skype the week prior, we had determined that I was a possible candidate for nerve decompression surgery, My history fit, my pain patterns fit, but we wouldn't know for sure until he had performed my physical exam and until we knew my response to the diagnostic nerve blocks.

We arrived in town on Wednesday and saw Dr. Peled Thursday morning at 9:00. He was (is) an amazing doctor who we both felt at ease with right away. He listens. He gets it. He speaks with empathy and honesty and doesn't bullshit you. And you really can't appreciate how far that goes until you've dealt with as many physicians and medical practitioners as Craig and I have these last six years.

The physical examination of my head and neck was pretty equivocal. Most patients with occipital neuralgia test positive for some kind of Tinel sign, which is performed by light tapping over the nerve to elicit a sensation of tingling or "pins and needles" in the distribution of the nerve. I don't experience anything like that, though, despite having several very tender "focal points" of pain in that area.

So we moved on to the blocks. Dr. Peled began by injecting an anesthetic into my greater occipital nerve. The goal of these blocks is to determine if they're contributing to the source of pain, so if and when they provide relief, it is relatively immediate (within 5 minutes) and only lasts an average of 4-6 hours. The plan was to start with the greater occipital nerve and then depending on how I felt a few minutes later, we'd move on to the next nerve to see if that made me feel even better, and so on.

He ended up blocking my greater occipital nerve, lesser occipital nerve, and third occipital nerve. After three blocks (technically six because this was all bilateral), my pain reduction was significant. Through the back of my head but also through my temples and forehead, where those nerves can refer pain. Like 90% better. Crazy.

When he came back in to the room the third time to ask how I was feeling, my face was blank -almost emotionless - which is ironic given how often my headache causes tears, and I'm sure it wasn't the reaction he was expecting. Maybe it was shock, or just an inability to process what I was feeling and what it could mean, but it was an inexplainable feeling; a quietness in my head. I had truly forgotten what that felt like.

We left his office with obvious optimism, even after the blocks wore off and my pain crept back in just a few hours later. All signs pointed towards surgery, which was confirmed when I saw Dr. Peled for a follow-up on Friday morning.

So here is exactly what's going to happen tomorrow morning: 

After opening up my neck, Dr. Peled is going to be looking at the different compression points of my nerves (which could be in a handful of locations). Basically, this compression is the result of scarring and inflammation around the nerves and the tunnels through which they pass, which can happen after whiplash injuries when the nerves gets overstretched. Ideally, he'll be going in there and "decompressing" by cleaning up or removing that tissue, but depending on the severity of the damage, there is a chance he may need to excise the nerves (cut and bury them into the muscle). The only real negative of an excision is that a portion of my neck/scalp that would be permanently numb. Not ideal, but a total no-brainer for me. I'd take a numb head over this one I have right now any day.

Surgery should take just 2-3 hours, depending on what needs to be done, and compared to my C1/C2 fusion/craniectomy, recovery really should't be too bad at all. I'll need to take at east for about 6 weeks (no exercise besides walking), but lucky for me that's all I have to do to get down the "aisle" (technically a dock) in 8 weeks.

I could wake up feeling significantly better, but the road to recovery can vary. Some patients have more or less surgical pain, some patients experience immediate headache relief, while for others it may take weeks or months. "Success" may not be 100% headache free (but it could be, and it has been for many!). It might mean less pain or it might mean fewer days at higher pain. So I'm going into tomorrow with the mindset that this surgery will move me in the right direction and that's all that matters. Beyond that, I'll just need to take it one day/hour at a time.

Maybe not today. Maybe not tomorrow. But maybe tomorrow!