I had my surgery this morning with Dr Hepworth and Dr Annest. I’m absolutely thrilled with the whole experience and the results. From the pre op nurse to the OR nurse, the doctors, everyone was absolutely amazing, so kind and so comforting. Dr Hepworth was a little late finishing up his first surgery of the day so I started around 10:30 instead of 8:30, but it was so worth the wait. I didn’t get a chance to speak to him yet but my fiancé did and Dr H said my jugular was tangled up around my styloid. Once the styloid was removed the vein didn’t open completely so he went back in and moved stuff around. Didn’t require any angioplasty/ballooning. He told my partner that he expects I will have relief from the old symptoms within three days! Super curious to hear more from him at my post op appt.
I have no facial paralysis, no pain really except my throat is sore from intubation, and my tongue is somewhat sore from nerve monitoring. Numbness around the neck and ear but that is absolutely fine. I seem to be OK chewing and opening my mouth but my throat hurts (especially my massive right tonsil, I’m sure that wasn’t easy to navigate around for the anesthesiologist) so I just had a protein smoothie and some jello. I did wake up with a really high heart rate so I had an EKG and they gave me some beta blockers to get it down. So I probably spent a little more time in recovery than most, but got home about 5 pm. The anesthesiologist suspected maybe from the trauma of surgery plus I may just have episodic tachycardia (he said this can be more common in young women?) just was a little scary waking up to them talking about how high my heart rate was, but I’m fine now and monitoring it via my Apple Watch.
I’m so glad I did this. I know it’s still early but I feels I hopeful and happy with the results. Even my incision looks AMAZING! I couldn’t have gotten to this point without you all, so thank you so so much for the support and encouragement along the way. I hope my sharing my story can maybe help someone.
Your incision looks amazing! & so does your neck! I’m so glad this is behind you & only healing lies ahead. You’ll be on the post op “honeymoon” today & some of tomorrow because of the anesthesia & anti-inflammatory meds used during surgery. Ice, Ice, Ice!! Sleep w/ your head elevated. Take your pain meds on schedule. You’ve read the drill on here many times but those orders can’t be repeated often enough.
I cut back on my pain meds on day 3 post op even with the info that days 3-5 after surgery can be the worst for swelling & pain. It was a HUGE mistake & took me 2 days to get back to where I was from a pain control standpoint before I did that. Rest as much as you can this week, but do start taking short walks tomorrow (fiancé assisted!) if your body can tolerate it. Gotta keep that blood circulating.
Really appreciate your thorough report, blossom! Now to pray for your steady & complete recovery.
Oh my gosh, this is such great news! I’ve been thinking about you all day, and checked in tonight just to see if there was an update. Thanks so much for posting, and I’m SO glad it went well!! Keep keeping us posted!
Thank you everyone! I slept pretty well last night all things considered and my pain is manageable with the Norco (hydrocodone/tylenol) Dr. H prescribed. I woke up in the night to take more and ice. He does not want me to use ibuprofen due to increased risk of bleeding. I was even able to eat some chicken nuggets last night just taking very small bites. My throat is somewhat swollen so kinda hard to swallow solid food but I was prepared for that with lots of soups; smoothies yogurt etc.
They didn’t give me oral steroids post surgery but before surgery they put antibiotics and steroids in my IV; I also got a sticky patch on my skin that helps with nausea for up to 72 hours, and they gave me a dose of long lasting oxycodone and gabapentin before surgery. Not sure if this is all standard but it was supposed to keep me from waking up in pain and it did for the most part! Once they wheeled me down to the OR I got a dose of Versed and I really don’t remember a whole lot beyond getting into the OR and then positioning my legs and arms in these foam things. In recovery they gave me iv dilaudid for pain and 5 mg Valium before I went home (valium may have been due to my high heart rate.) Looking back now the high heart rate was a tad scary because it felt like a really bad panic attack and I had to really concentrate on my breathing. They made my partner wait a while to come up to see me because they knew it would probably just raise my heart rate again, and it did haha. They had it under control though and the anesthesiologist checked on me several times in recovery. Thankfully today it’s back below 100 like it should be. Somewhat strange but I seem to react to anesthesia by getting more amped up not tired like a lot of people do. My partner said I was talking a mile a minute when he finally came up haha: Just not a complication I’d even thought of! Sharing all this just to say how compassionate and helpful the hospital staff was, for anyone seeing Dr H. I think one of my biggest fears was waking up in a lot of pain and I certainly didn’t experience that.
I’m also managing my expectations and I know it could get worse yet still but I have not had any of my previous symptoms. Like 0. My pain behind my right eye is not there even when my incision starts to feel ouchie. That headache would come and go pre-surgery but it’s hard to explain… even if it wasn’t “hurting” I could still just feel that something wasn’t right in there if that makes sense. Just felt off all the time. And I don’t feel that way at all now. Incision pain is so much different than what I was feeling pre-surgery and honestly… it’s way easier to deal with. If I could even get rid of that one symptom I’d be thrilled and consider this a success.
Thanks @Bopper i hope sharing this can give you more clarity on what this might be like if you decide to move forward for surgery. I am just so thrilled with how it went. one silver lining of all this is that this has really helped with my medical/doctor anxiety… just being treated so kindly by hospital staff and the amount of trust I have in Dr. H. Having had him see this through for me has given me a much more positive outlook in doctors in general. He is one of a kind!
So glad that all’s gone well, & that you feel surgery’s been a success already! Hope your recovery keeps going as smoothly (but glad that you have some realistic expectations!) Will keep praying
I assume for most of us it’s a really long journey even getting to a diagnosis. I’ve lost my faith in doctors more than once. Honestly before I found this site and started looking into jugular compression I was telling myself that this is as good as it’s going to get for the rest of my life. It’s great to hear your positive experience. Hope your recovery is a quick one and you can get back to enjoying life the way you were meant to!
I also had significant eye pain prior to surgery (felt like my eyeball was being pushed out of the socket from behind). That whole sensation was gone when I woke up from surgery. It was a huge relief!
This is where I keep going back and forth. The eye pain is bizarre. It’s a weird, cold sensation. Very unnerving, pardon the pun. But it is so sporatic. It will be barely there for months, and then come back. Now it is back. I don’t take anything for it, I just live with it. When I don’t have it, I think “why do I need surgery? I don’t want to trade this little problem I’m not even feeling right now for some new nerve problem that surgery causes.” But then when I have it I think “get that thing out of there!” The compression dizziness isn’t as bad any more either, but I think part of it is that it has just become my “new normal.” And I’m not getting any younger, and Dr. Hepworth is here now. I don’t want it to get worse later on and not have the option of surgery. So I will probably call to schedule it shortly.
@Bopper cold sensation behind the eye is exactly what it felt like for me. I would have an impulse to shut my right eye to relieve the pressure feeling. This started when I was 23 working at a really fast paced stressful job. Some months I’d not have it at all and other months it would be several times a week. I was diagnosed with “migraines.” Fast forward to 2020 my throat started acting up and around that same time the eye/face pain was there every single day. I don’t know what happened to worsen my symptoms like that but it is such an awful pain and so unpredictable. I often didn’t wake up with it but it would be there by end of day.
Still early days for me, but I don’t have any first bite syndrome or jaw issues or facial paralysis, knock on wood, which were some of the effects that I’ve read about here and was prepared for. Half my chin, neck and ear are numb though. Maybe I got lucky or maybe Dr. Hepworth’s technique is just that good, maybe a little of both! The absence of the eye pain is really making the neck tightness and pulling sensation a lot more bearable.
I think I overdid it a little today as I was doing laundry and stuff like that and my incision started bleeding a very tiny bit. I was able to take a shower so long as I didn’t spray the water directly on my incision so that was really nice. I’ve also been coughing up nasty phlegm which I think is a side effect of the intubation, but man it is not comfy to cough right now. Those are basically my biggest complaints. We did take a short walk today and I felt fine for that. Also was able to sleep on my left side pretty comfortably. I’ve been icing a lot and tomorrow will be trying to rest more. I feel like all of my posts are so long haha but whatever this is basically my surgery diary now, feel free to scroll by.
I don’t know about anybody else, but I am hanging on your every word. Keep them coming! Those of us still on this side of surgery love hearing about what it looks like on the other side, especially when it’s basically good news! Yes, all of my symptoms came on suddenly in March of 2018. Ear pain, eye pain, throat pain. And panic attacks, which I thought was me overreacting to the ear, eye and throat pain, but now I realize was probably related to the vagus nerve. The dizziness didn’t show up until January of 2020, which was apparently when it shifted and started blocking my jugular. The symptoms were all worse when they first came on. But just when I think they’re gone, they’re ba-ack!!! Maybe they just seemed worse because on top of the symptoms I also had the fear because I had absolutely no flipping idea what was causing them. Now at least I understand.
Good, logical thinking, Bopper! Jules has often said she decided to have her surgery while there was a doctor she knew she could trust who was somewhat local & accessible. She didn’t want to wait & find that he’d moved or retired.
As far as ES goes, it’s good to wait to be sure surgery is your best option, but ES does tend to progress, so once you’ve decided surgery is the way to go, keep moving in that direction, & before you know it, it’s a thing of the past!
I love your long posts, blossom! They contain great information for our members who are “on the other side of the fence”. Please keep sharing as long as you want.
FYI, facial paralysis is usually something you wake up from surgery with, so I’d say you’re home free with that one. FBS can develop several days post op. Mine started on day 5. I knew what it was immediately because I’d read about it on here. I anticipate that you won’t get it. Fingers are crossed! Prayers being prayed!
BTW, I can’t believe you were doing laundry today! That’s a testimony to how well you’re doing. I took the first week after surgery off & sat in our recliner & watched chick flicks (I was too loopy from pain meds to read), visited w/ friends, posted on this forum, & took short walks w/ my sister who came to help me so my husband didn’t have to take time off work. I applaud your energy, but your idea to take it easier tomorrow (& for the next few days) is the best.
Thanks @Isaiah_40_31! Have you ever heard of anyone having first bite syndrome before surgery? I used to notice when I’d eat I could feel my salivary glands going into overdrive. It wasn’t a horrible pain but kind of sharp shooting/stinging. I don’t have it now but always wondered if that was first bite pain.
The weirdest sensation I’m experiencing now is my neck and ear are numb but occasionally itch, but then obviously scratching the area does nothing since it’s numb! So weird.
Today is day 2 or 3 depending how you look at it and I would say my pain is a bit worse today. I had to take two pain pills last night around 4 am instead of just one but they kicked in fast. It’s just tightness and pressure. Turning and moving my neck is difficult, don’t think I’ll be able to drive for some time yet. The swelling is very manageable at least and I’m not having as much trouble swallowing as I was at first. I’m trying to keep my muscles relaxed and not clench up but finding it a tad difficult, not sure why! Overall still doing really well, but going to take it easy today as much as I can.
Yes, I have felt pain very similar to the description of first bite syndrome and I have not yet had surgery. Hang in there blossom, it sounds like you’ll be feeling better with time and that your surgery was successful and that’s such a relief!
Feel free to write long posts; it’s so useful for those waiting to have surgery, that’s what the site’s for! I’m glad things are going the right way, but definitely take it a bit easier. Walking was fine for me, housework not
Yes, as Dizzylady noted, we have had members who had FBS prior to surgery & surgery resolved it so it can go both directions. I think I ended up w/ it because my first surgery was a challenge. My glossopharyngeal nerve was wrapped around my styloid & had to be unwrapped for the styloid to be removed. When I woke up from surgery, my face was fine but half my tongue was paralyzed. I could feel it fine, but the motor part of the muscles didn’t work. That took 6-9 months to come back. Very challenging to talk & eat normally when half your tongue doesn’t work!
As your nerves wake up, you may feel, itching, tingling, cooling or warmth sensations, stabbing or shooting pain, & dull aching. Though these feelings can be uncomfy, they’re a sign that nerves are healing. I do still have a bit of numbness along my left jawline. When the nerves were healing there I had the cool/warm sensations. It was really odd.
I’m guessing doing laundry yesterday was a bit much so you may be a bit more inflamed today PLUS you’re in that 3-5 day post op window when things can be a bit worse. By the start of week two you should begin to notice more consistent pain & swelling reduction. I’m glad you’re taking it easy today. You may want to take it easier for the next couple of days (walks only if you feel up to that).
Let the housework go for a couple of weeks then ease back into it. Driving may also be a challenge until you can turn your head comfortably. I know what it’s like to be an active person…sitting around is Just keep reminding yourself that downtime now pays dividends going forward in helping your body recover quicker.
