Two month surgery update

Hi everyone! I’m two months from surgery now as of December 13. I went back on plavix for about three weeks to help with pre surgery symptoms that came back, and lucky for me, it did seem to help. I haven’t been sharing because I don’t want to jinx it, but it has been a solid six days off of plavix and I’m feeling really good. No pain really at all! Occasionally I will get a hint of a headache, but it never turns into anything more. I’m now a few days off of the muscle relaxer I was taking occasionally as well to see how I tolerate that. So far so good.

I’ve done a bit of hiking since my surgery but this week I really pushed myself as a sort of test to see how I felt. I used to get dizzy and lightheaded and have a pounding headache and tinnitus when I did strenuous activities or exercise. I’m so happy to report that I did a 3.5 mile hike this week and did not get dizzy AT ALL! I had a tiny, tiny headache when I finished the trail (was really pushing myself as it was high elevation and all climbing at the end) but once I drank water and rested a bit, I felt completely fine. This is huge for me as I love to hike and bike and I felt eagle syndrome was in a way preventing me from enjoying those things. I felt incredible when I finished! I even expected to pay for it the next day and feel worse then… but nope.

I still have first bite pain, but it’s getting more infrequent and less intense. Honestly, if I had first bite for the rest of my life but could live free of eagle pain, it would be a fair trade. My neck and ear are still numb but the area below my chin is starting to wake up. It feels very strange! Tingly and itchy sometimes, but not painful. My ear gets quick electric shock type feelings sometimes. I’m trying to massage my scar everyday as my doctor’s NP said that can help with the odd nerve sensations. But not going to lie, I kind of hate the way it feels. It’s just a little bit… icky feeling or something. Not painful.

Today I’m going to have a repeat ultrasound done of my neck and shoulder area (where Dr Hepworth cleared our scar tissue that was compressing my vein) to see how my vein is flowing. I’m not too nervous because I feel good and I know that I will be taken care of regardless of the results.

I’m traveling next week for Christmas and I am anticipating a flare up of pain as traveling was a trigger for me in the past… hoping for the best, but prepared for the worst! It seems every week I improve a little bit more. Hopefully, eventually, I won’t have to worry about flares at all, but it’s hard to get out of that mindset when I’m so used to managing pain.

Though my recovery has been up and down, I’m so grateful I’ve had any good days at all. That’s an improvement from my life before surgery. I have a lot of hope as time goes on I’m going to feel better and better. Wishing everyone a happy, pain free holidays and all the good things in the new year! Good luck to everyone having surgery this month.

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image

Here’s a picture of my scar! It’s barely noticeable anymore.

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Thank you for the update, that’s brilliant news, really happy that things have improved so much for you! I agree that numbness or some first bite is a good trade off for getting rid of Eagles pain…It’s such a great feeling to be able to get back to normal activities without suffering :grinning: and good you’ve been able to come off the meds I hope that travelling isn’t as bad as before, and you have a really good Christmas!
The scar looks like it’s healed really well too! Hope the ultrasound goes okay.

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Oh I’m just SO happy for you! And that scar looks like nothing more than a scratch! Keep those positive thoughts in the forefront and I have a sneaking suspicion that traveling will prove to be a pleasant surprise :relaxed:

My very best to you and great vibes for continued positive gains! Merriest Christmas to you!

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I’m so glad to know you’re doing so well, blossom! :clap: :clap: If I recall correctly, the worst of my ups & downs w/ recovery was over around the two month mark & most of my recovery from that point on was forward progress though some was still slow.

I agree w/ you & Jules. FBS is a small price to pay for being rid of the worst of the ES symptoms. I had it, too, & still do but am finding that it is continuing to diminish as the years pass. Sure doesn’t affect my desire to eat (drats!! :stuck_out_tongue_winking_eye:)! I, too, expect traveling will be a far more pleasant experience than in the past.

If we lived closer to each other, we could be hiking buddies! That’s definitely my favorite past time. I’ve kind of given up cycling since my accident in 2015. Still ride a little but not as much as I used to.

Wishing you a Merry Christmas & a happy, pain-free, healthy year in 2022! :evergreen_tree: :confetti_ball:

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WOW, just wow! Thank you so much for the update. I was hanging on your every word as I read it. If my daughter could even have one day of no headache, I would be amazingly grateful. If she could have as great of success as you’ve had, all my prayers would be answered!

Thank you again so very much for sharing updates, keep them coming. It is so encouraging and helping get me through the long wait for her surgery in the spring.

Take it easy on yourself over the holidays and just enjoy! Many blessings!

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I cannot tell you how good it feels to read this. I’ll live vicariously through you for a bit if that’s ok! Totally get you on the superstition too. I believe people who experience chronic pain can certainly develop a sense of doubt when said pain starts to subside.

Would love to hear you continuously progress to 110% of your former self. In the meantime I hope you turned in your wings permanently.

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Hello - what is the first bite syndrome?

Surgeries in the neck & throat can sometimes cause the parotid gland (our largest salivary gland) in the cheek area to become hypersensitive when a person first starts to eat. Nerves to the parotid fire intensely when the first bite of food enters the mouth causing facial (only min the area of the affected parotid gland), ear, neck & possibly scalp pain. Not everyone has pain in all those areas. My pain is almost strictly in & around my parotid gland.

The pain only lasts for a few seconds then one can resume eating without a further problem. It’s treatable w/ nerve pain medication if it’s severe enough but many of us have found that simply staying very hydrated (60-100 Oz water, herb tea, etc, per day), staying away from foods that cause the worst symptoms (sour, spicy, extra sweet…) are other options that help. I also found if I put food in my mouth & let it sit for a few seconds before starting to chew, that can reduce my symptoms.

For most people, FBS goes away or minimizes w/in a few weeks to a few months post op.

https://www.google.com/url?sa=i&url=https%3A%2F%2Fwww.mskcc.org%2Fcancer-care%2Ftypes%2Fsalivary-gland%2Fsalivary-glands-anatomy&psig=AOvVaw3hNgaLyC8LOzkBef_S2STG&ust=1640193050372000&source=images&cd=vfe&ved=0CAsQjRxqFwoTCPjS7rWx9fQCFQAAAAAdAAAAABAD

Hey everyone! Thanks for the kind words.

I still feel great and only had very infrequent/minor pain on my travels. Today I drove 10 hours and I feel fine. I’m so happy! I still take the muscle relaxer occasionally. I notice anything lingering at night the most, but it’s not every day.

I also got my ultrasound results emailed to me before Christmas. Basically the report said my jugular is normal. It didn’t list velocities so I’m curious what they were, compared to almost two years ago. The ultrasound tech did say that my doctor wanted it interpreted by a specific radiologist, so it would make sense that my jugular is now flowing freely. That just confirmed for me even more that the surgery was successful.

Happy new year! I hope everyone is on their way to healing in 2022.

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That’s good news! you should be on track for a healthier 2022 yourself :smiling_face_with_three_hearts:

Thank you for the update, blossom! SUPER GOOD NEWS about your lack of pain during travel & vastly reduced symptoms. You’re on your way back to living freely! I hope your remaining symptoms disappear rapidly in 2022!!

Happy New Year to you!! :partying_face: :partying_face:

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Woohoo!! So happy to hear it!

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Hey everyone. I’m still doing really well. Only very occasional symptoms that I manage easily with 400 mg ibuprofen every so often and/or a muscle relaxer. I saw Dr. H in January who said he’d give it a few more months but if it’s still happening he would refer me for physical therapy for muscles in my neck. Regardless I feel soooo much better than I used to.

One thing I’ve noticed is my anxiety and irritability that came with my anxiety is a lot better. It could be that I was in so much pain I just had a shorter fuse, or maybe could be some scientific reason for it (vagus nerve involvement?) but it’s something people around me have brought up and noticed, and I’ve noticed myself. I’m just a lot calmer now and I feel more emotionally stable if that makes sense. I don’t sweat the small stuff as much. No panic attacks either, but I’m pretty sure that was some side effect of my jugular being compressed. Just thought I’d share more positive news!

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That’s great news! So pleased that even the anxiety is easing, as you say it has been asked about alot. Thank you for keeping us posted & hope you keep improving even more :hugs:

So good to read your update, blossom! I’m really glad you’ve had such a good recovery so far. I expect your nerves & muscles will continue to improve as time passes, but there is certainly nothing wrong with a bit of PT to encourage that. Your story is a bright spot in my day! :partying_face:

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@blossom good to hear that you are doing well and I did follow all your journey here which gives all of us hope that one day we will make to the other side of this. I think I read it somewhere that Jugular vein compression does cause anxiety & depression and could have been alleviated by removing the compression. I wish I would have seen Dr Hepworth. He is very capable and kind doctor based on all the stories I heard about him.

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I’m 2 months out from surgery with Dr. Hepworth and this post gives me so much hope, so thank you for sharing! Unfortunately my symptoms all came crashing back 3 weeks after surgery… Hoping it’s just swelling, but also could be due to my vein re-collapsing (not sure that’s the right term, but don’t know what else to call it). How are you doing now? Thank you again for sharing your story!

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Hang in there! Three weeks isn’t very long at all. It’s hard to be patient but it took me a good six weeks to start feeling better. I did have to go back on a blood thinner for a period of time in month 2-3 I think. Im not on it anymore though and still feeling great. My symptoms flare occasionally but it’s usually when my body is stressed (dehydrated, hungry, tense) and only lasts a day or so when they do. Dr H had me going to physical therapy for a while and I’ve learned some stretches that help - the main one is lying on a foam roller with it parallel to my spine and letting my shoulders hang back off of it. I feel the physical therapy did help, it was mostly massage and stretching. I would say my symptoms are 90 percent gone, just a stubborn 10 percent lingering like I said when I have a lot going on. The theory is it’s my muscles in my neck and shoulders and that seems to track with physical therapy having helped like it did. Good luck!! It definitely takes time.

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Do you have names for the kind of PT you’ve been doing. I’m looking to start

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