I had my surgery a week ago! This is a recap of my deal and the surgery, and what I notice so far.
My surgery was performed by Dr. Samji in San Jose, Ca.
I am a vascular case with no pain. Basically had rt side jugular compression and neuro symptoms.
Background info: Main Complaints- Headaches, pulsing high blood pressure feeling in neck and face (as if rubber band is around low part of neck and trapping pressure above it), transient alternating blurry vision, eustachian dysfunction, mild unsteadiness with occasional vertigo attack, heavy fatigue/brainfog (I had more symptoms, but it makes the post way too long)
Relevant Tests Done- MRI head/neck, CT head/neck/chest, lumbar puncture, cerebral angiogram
Evidence From Tests- low or no flow internal jugular rt side, extensive collateral veins at skull base, high intracranial pressure, significant pressure differential in jugular flow across styloid at level of C1
Surgery decision I was hesitant to do surgery. I went with what my docs at home recommended, the test results, and tried to play the risk/reward thought process. The cerebral angio and the lumbar puncture were the final pieces that pushed me toward the surgery decision. I went in fully accepting that surgery may change nothing at all, and I made sure that I was being realistic in my expectations.
I picked Dr Samji because I liked that he had done quite a few (over 40 of them), that he does some nerve monitoring for the facial nerve, that he was willing to remove the styloid to the base and not just a portion of it (that was probably my biggest concern), that he would recommend removal of the other side if he saw something that indicated both sides could be causing symptoms, and I liked the reviews left by others of their experience.
The playbyplay: I traveled 20 hours by car for the surgery with two friends. The surgery center is easy to find, park in, etc. Check in was easy. There is wireless in the waiting area. There are plenty of places around there (short drive) to eat, get your meds, groceries, etc.
Someone was getting their styloid removed before me, and I wonder if it was someone here? :)
I checked in for surgery, and shortly thereafter went back to a small curtain bed area to get my IV put in. I met Dr. Samji and my anesthesiologist. They were both super nice and personable, and rolled well with my wiseazz remarks :)
I walked over to the surgery room, got on the table, and start chatting with the anesthesiologist. I realized I was feeling different and could tell that he had started his meds to knock me out. The surgery team was nice, polite, and funny. We were chatting and then I guess I was 'out', because that's all I remember.
The next thing I knew, I was back in the small curtain area and my eyes were not open yet. I could hear my friends and the nurse chatting, and could hear Dr Samji taking, but I couldn't get my eyes open yet. I remember thinking it was kind of cool that I could hear everyone but couldn't make my eyes open. I woke and my friends and the nurse were there to help me get dressed and on my way out. I missed Dr. Samji. Darn. I was off balance and really mellowed out at this point, and a little nauseous. Swallowing hurt like level 4 out of 10 just on that one side, and really the pain was not an issue. You do go home with a contact number for Dr. Samji or the on call doc.
That night in the hotel, I basically was just really nauseous. I might just have a harder time than most with nausea. The pain in the neck and incision was not bad. I noticed it when trying to swallow, but again-- it hurt, but nothing unbearable. I couldn't open my mouth more than 1/2 inch because it hurt to go more than that.
My friends took care of med timing and assisted me with walking. I could NOT sleep. I don't think that's normal. I think most people are knocked out by the meds. I could tell that my sinuses (breathing thru nose) on the surgery side were WAY way easy to breath through. I had to sleep on an incline, so I brought my giant wedge foamy thing from home, added pillows, and made it as comfortable as I could. You can get this thing at Bed, Bath, and Beyond.
I tried the bag of frozen peas on my neck, and the weight of that bag was just too much for the swelling, so I didn't use it. I was not hungry for days. I ate as much as I could starting the next day so that I would heal. I used those little applesauce pouches with the cap that kids get; I highly recommend stocking up on those for post surgery! When I could add more, I drank chocolate Muscle Milk.
I felt like I could travel around with no problems about 48 hours after the surgery. I really felt good, hardly any nausea, hardly any pain. I was not sleeping more than a few hours a day, though. I did get to do a long car ride on a twisty road 3 days after surgery day and did a 1/2 mile walking trail, which was no problem. I brought a neck brace and used it on the twisty part of the road, since it was fatiguing on my neck muscles.
I was told that I might start to feel better, then I might feel worse again about 4-5 days after surgery. I did not experience this. I have constantly improved.
Post op and changes I notice: Saw Dr. Samji for my post-op appt. He took the steri strips off and we discussed some things that I have already noticed improvement on. We are on the wait and see plan for other improvements, and for what to do with the remaining styloid.
I am thrilled with how open and clear the sinus on my right side is-- it is so EASY to breathe through my nose :) That was kind of unexpected. I think the eustachian on that side may be fixed, too, judging by how it reacted as I traversed various mountain passes on the ride home.
I do have a little nerve sleepiness in my mouth and I smile a little dorky, but it should resolve with time. I still cannot open my jaw much at all. I am not sure if my face/neck pressure is gone or not because the swelling on the surgery side of my face is pulsing just from being swollen. I won't post on that till I'm more sure. I can't lean over right now because pressure in the neck because of surgery is high. This should get better.
I was always a little off balance this year when standing around and stuff. I don't notice any of that unsteadiness since surgery. I notice clearer vision, maybe a wider field of vision than before, and more alertness overall. These are hard to put a tangible measurement on, so I will try to be as straightforward about them as I can. I realize some could be psychological 'over noticing' of things.
I can look down without the whooshing sound and without a dramatic increase in pressure in my head!
I also do not have wild heart rate fluctuations or fainting feeling when standing up from sitting or crouching (POTS-like symptoms). I hope that changes for good.
The incision looks ropey and is raised like a worm, and I did in fact scare a small child when she asked to see it haha. I told someone else that I got into a knife fight. It's healing way faster than I thought, though.
I will update as I notice things changing!
I like Dr. Samji; he is unassuming, nice, leans forward to listen when you talk, jokes around readily, and is a Broncos fan -- ha-- extra points for that! He is interested in updates, and if I need to get the other side taken out, he will be my guy to go to! He checked up on me on the drive home after I thought I had some weird medication symptoms. I appreciated that a lot.
I realize I may have left a bunch of stuff out, and that this is super long. I hope it helps for now!
