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Sunday, July 9, 2017

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! 

1 comment:

  1. I'm loving how you write! I it brought tears to my eyes thinking of you in that moment of no pain...we get so used to dealing with this, I think we forget how bad it really is. I too have ON. It came on 9 months ago. As I creep into my one year anniversary, I question my next move. I'm more than interested in Dr. Zev Peled. I've read so many success stories! I will follow your post with great anticipation that your surgery goes or went well and that you walk down the aisle feeling freakin great!!! Best to you, Tammy