4 Months Post Op

General
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So, I am about 4 months post op with Dr. Nakaji and wanted to share my recovery, so far.

I have noticed a slight reduction in headaches and the severity of my neurologic symptoms, like around a 10-15% reduction. I still have neck pain and tightness, but I don’t get a stabby/achy pain when I turn or tilt my head to the left anymore. My C1 was not able to be shaved, so it still is partially flattening my left IJV and my vein did not open up a whole lot…but it is no longer being sandwiched.

The only complication I still have is first bite syndrome. I have seen a few people post about it but yes, its excruciating and I just dissociate when I take my first bite or something brushes against my cheek to distract from the pain. I have a feeling its a bit of trigeminal neuralgia as well, but I have not confirmed that.

I knew those complications were a possibility, so I was not shaken when I noticed them. The pain is very slowly getting better over time but it is still bad enough that I have to take caution when starting to eat.

I did have some accessory nerve irritation that affected my ability to shrug but that resolved after about 1-2 months. I don’t have any residual weakness from the surgery but my nerve is being pinched between my IJV and C1, so that was already a problem from the get go. We may have to explore this if decompressing the other side doesn’t resolve the pain.

My right side has actually gotten worse and the stenosis is now considered severe. We are planning on doing that side next.

All-in-all, Dr. Nakaji did what he said he would do. He has remained interested in my recovery and checks up on me every few weeks and has been very transparent of his plan. I will be moving forward with the right side and eventually post about that as well.

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Thank you very much for your update, @avarj. I’m sorry you haven’t had a more successful recovery, but it sounds like your surgery didn’t quite go as you & Dr. Nakaji planned. It’s good that preserving your nerve function took precedence. It’s also great that he’s continuing to follow-up with your recovery progress. That’s rare for most doctors.

I had severe FBS after my first ES surgery & over time I learned that keeping my saliva very dilute by drinking 80-100 oz of water/herb tea per day helped a lot in reducing the intensity of the pain (time also helped). I hope you notice it becoming less intense. Mine lasted for 10 years & still hits me occasionally but nothing like when it first started. I’m so thankful it’s finally mostly gone. Most people have full recovery from FBS in 4-6 months post op.

Please let us know when your next surgery is scheduled.

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I’m glad that there has been a slight improvement, even if not as much as you hoped, it won’t be helping if your compression the other side is worsening… Good thar Dr Nakaji has still followed up with you & will do the other side.

Thanks for sharing about your accessory nerve, it’s encouraging for others to hear that this has improved too..

As @Isaiah_40_31 said, let us know when round 2 will be!

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