Two month surgery update

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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@elijah its mostly just been body work (massage) of my upper back, neck and shoulders. The stretch I mentioned was recommended by the PT as well as using some resistance bands to build strength in my shoulders and force them back instead of slumping forward. Posture is huge from what I’m learning!

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That’s so great to hear! Yes PT has been a big help to me as well. I’ve been 3 rounds now, and even though there were underlying problems so it didn’t totally help, a lot of the stretches he’s showed me have helped my shoulders and neck. They’re still painful, but I think doing the exercises every day brings it down just a little.

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I am having problems with my neck shifting and popping post surgery, so I was sent to the physical therapist. I have attached the exercises they have me do. this is just the initial consult bc my insurance reset and I can’t afford to go back.
they say my weak shoulders are putting more pressure on my neck, but this is genuinely helping keep my neck on alignment

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Those look like good passive exercises to help w/ muscle strength & mobility, @tp12! I’m glad you found a good PT, but I’m sorry you can’t continue w/ your treatments there. It’s great they’re helping you. When our muscles are strong & functioning properly, they are very supportive. You’re getting the benefit of that now as your shoulders begin doing the work they should. Thank you so much for sharing these. :hugs:

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at the PT, my c4 was “in alignment, but turned” whatever that means, so these exercises are supposed to strengthen muscles and keep them all turned the right way. I had a real problem with feeling my neck shift, especially at night when I put my head on the pillow. that, of course, was getting them on and off nerves causing pain. the cervical exercises every morning have been resetting me great!

eta: at one point, I could literally sit there and touch my neck and feel it shift. the chiropractor got it right for me and I had no issues for about 6 weeks and my spinal appt was within those six weeks. the np I saw was fresh out of school and told me I was making it up, but sent me to PT anyway. it was back out of being right by PT and it felt SO good to have the PT hear me, then confirm she felt the issue and then give me a treatment plan!

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BOOO to the “know-it-all” NP & HOORAY for the PT who had good listening & assessment skills! I’m really glad that the NPs recommendation brought you into a better physical situation in spite of the NPs negativity.

to anyone who reads this thread in the future, these exercises are doing great at stabilizing the c4-c5 area for me, almost never hurts me now.

a bit after I posted the PT post, I shifted again in the c1-c2 area which is what causes so much pain/neurological symptoms for me. there was a lot of negative for me with the chiropractor, but he sure did stabilize the neurological symptoms for me for about 8 weeks and that’s the longest amount of time since February 2021 I’ve had stability there.
I add in some neck stretches I found on YouTube and ice packs when I start to get the neurological pain and I have noticed that the duration of my pain and symptoms has decreased.
it can get very overwhelming to accept that this is my neck now, but I’m so glad that I am building some strength in my neck and shoulders and at least faring better pain and symptom wise than I did for a long time.

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Sounds like you’re doing all you can…glad that you are seeing some improvements for the effort :hugs: