I had my more symptomatic side done on Monday to relieve severe IJV compression - c1 transverse process resection, styloid removed (measured about 4.5cm), posterior belly of digastric removed, and two enlarged lymph nodes removed.
Sorry in advance for the long post - I want to share my experience to help others but also to hear from anyone who is further along in the process than I am. Surgery was very successful from a decompression standpoint, but my primary complaints from prior to surgery (cognitive dysfunction/brain fog, headache, fatigue, pressure in head and neck) are all significantly worse so far, and they were already very severe before surgery. I woke up immediately feeling worse, and my pain was hard to control in the hospital. It didn’t help that I had severe nausea and vomiting all day on the first day (like 10+ episodes) and couldn’t eat or drink. They also had me on a heart monitor because I was having tachycardia the whole time, which is odd because my last surgery (on my pelvis) caused bradycardia. The next morning, I was able to keep food down, so they discharged me despite my pain and tachycardia still being uncontrolled.
I ended up returning to the ER that night because my pain and cognitive issues were worsening - I also was (and still kind of am) having short-term memory issues, mild hallucinations, and severe double vision that has now improved a bit. I will say that Dr. Costantino and his PAs are absolutely fantastic - they were in contact with us every step of the way, and promptly ordered a CTV to check on everything. I highly recommend him and his team. Fortunately everything looked good on the imaging, so I got some more IV tylenol, steroids, Benadryl, and valium, which seemed to give me enough relief to finally get back to the hotel and get some rest for about 4 hours before it wore off. I think that the IV meds are more effective for me than oral because I’ve been having gut absorbtion issues since prior to surgery, and opioids don’t seem to work at all and possibly even make things worse, maybe due to my MCAS. I think the valium helps because my muscles seem to catch and cause extreme pain in my right neck and head any time I try to move my body at all. Did anyone else have this post-surgery? I also can’t move my head without using my hands to support - it feels like I’ve lost all stability, though I ruled out CCI prior to surgery. I thought my head felt heavy before, but now it really feels like a bowling ball hanging by a thread. Did anyone else have this immediately post op?
Sleep has still been extremely rough due to the pain, and I’ve been waking up often in a sweat with my heart racing. My sleep paralysis has been worse than usual too. My best routine for managing the pain so far has been the steroid pack to reduce inflammation, 1000mg Tylenol every 6 hrs, valium in the morning and evening, and Benadryl at noon and midnight. Ice helps if I can tolerate it, but the pressure of the ice on my neck hurts. Gentle massage of my extremely tight traps and shoulder muscles also seems to help a bit. I hope this helps someone else who is struggling and I’m open to any other suggestions
There are a few positives to all of this - I don’t seem to have any of the usual side effects from surgery. No first bite syndrome, no issues with the spinal accessory nerve (I have full use of my arms and can easily raise them above my head), no facial paralysis, I can chew solid food, and only mild numbness in my ear/jaw which doesn’t bother me one bit. And oddly, despite everything being worse on my right side, my left side feels completely better. My left side was mild to begin with and only became symptomatic four months ago, but symptoms were occuring daily and steadily worsening, so I’m very pleased with that. I’m still open to having my left side done in the future though since it is just as compressed as the right. Additionally, my high pitched tinnitus in my right ear improved dramatically from the moment I woke up from surgery until today. It is ramped up again today, but my swelling is the worst today so I think that’s expected.
Sorry that this is all over the place and thanks for reading it all - my brain still feels like it’s full of poison and is running on 10% capacity, so it’s hard to type all of this out coherently. My main question: did anyone have worsening of symptoms like this immediately post-op, then improve in the following weeks/months? I am hopeful based on some of the stories that I’ve read on here, but also a little discouraged because not only did I NOT have immediate improvement - things got worse. I sincerely hope this worsening is temporary. Thanks in advance!
