7 days post styloidectomy and C1 shave surgery - vision worse and whooshing hasn't gone away

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Hi everyone! I had right sided jugular decompression surgery 7 days ago now. They removed my styloid ligament, did a c1 shave and fascia and digastric muscle release.
The positives:

  • I have little to no brain fog
  • It doesn’t feel like blood is rushing to my head when I change posture anymore
    -Blood isn’t pooling in my legs anymore
    -I’m sleeping so much better
    -No more sensitivity to light

The negatives:
-I woke up from the surgery and the whooshing was still there.
-My vision changes initially improved but has worsened in the last few days. It also feels like the lymphatic system in my face isn’t draining properly, my eyes are sooo puffy.
-The right side of my chest, around the collarbone area has been pulsing like crazy, worse laying down.
-I have had a constant pressure feeling in my temple/forehead area on both sides (although I’m not sure if this is because of the mayfield pinions clamp they used during the surgery)
-Today I have developed a cold water feeling on the left side of my scalp - which I used to get when the pressure was high.

My question is: is this normal in recovery? What are other people’s experience with recovery? Is there anything I can do during this recovery to help myself? I’m feeling disheartened and worried things aren’t improving, especially the whooshing and vision changes.

As and added note: My left jugular is still compressed and so is my left transverse sinus (right transverse sinus is stented). I’ve been told my left transverse sinus is too small to stent

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It’s very early days in terms of recovery, you’ll still have lots of swelling so it may well be that you’re IJV is being compressed by that. Days 3-5 are typically worst for swelling, but it’s very common for this to last longer. Any ES surgery recovery commonly has it’s ups and downs, and can take months, and yours will likely be slower & harder because of the extra work done with your C1 shave, fascia and digastric muscle released…It’s great that you have seen improvements already, so try to hang on to those positives!
If you’re not already doing this, I’d suggest sleeping propped up as this will help swelling, and icing your neck regularly.
@premedmom posted this info about lymphatic drainage post surgery, which should be helpful, although I can’t see any info about when to start; I would think that it’s probably too early right now, I would wait until the incision has healed properly, you could ask your doctor about this:
How to do Lymphatic Self-Massage on Your Face, Head and Neck
Steroids can help with swelling too if your doctor is willing to prescribe them…
You might find this discussion helpful, @Val7426 has posted about her husband’s experience with styloidectomy & C1 shave, and also @PatientD has posted info in it about lymphatic drainage…
A Canadian’s Journey: VES Surgery in Türkiye Dec. 10 - General - Living with Eagle
@Chrickychricky has also posted about recovery, here’s one discussion, hopefully those mentioned will give you some more input!
Styloidectomy with C1 shave recovery? - Symptoms and Treatments - Living with Eagle
So try not to feel disheartened, it’s not a quick fix and that you’ve seen some improvements so quickly is good. Praying that things keep improving for you :pray:

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7 days is super early to judge the success of a decompression surgery. It is good to hear about the positives because it’s likely only going to be improvement from here on out. Lots of ups and downs, and you may have days where you are discouraged. That’s normal, and try to remember the next day may feel very different.

My experience on this site is that most people had styloidectomies, and it’s only pretty recent that a C1 shave or digastric cut is added. Therefore you have a small sample size to compare to, and everyone has a different experience. Partially because each surgeon has their own approach and it isn’t routine like a hip replacement. Some remove the belly of the digastric, some remove it completely, some remove the muscle on both sides, some do one side. These differences have a big impact on recovery so when you’re talking with others and you think you are comparing apples, it’s more like comparing an apple and a pineapple. Sounds similar, kinda, but completely different.

JC had a frontal headache for a solid 2-3 weeks after surgery and it eventually went away. His whooshing was immediately gone, but this can be inflammation and you might consider strong anti-inflammatories or a steroid to speed heal the swelling and see if that helps.

His eyesight was better, then worse, then better, and now it’s more or less stabilized. His prescription changed after surgery (vision is worse) but according to the ophthalmologist it is strictly a coincidence (hmmmm). However, his visual snow is gone.

The cold water feeling could be nerve irritation, and again, hopefully this will go down with time. Keeping in mind that nerve healing may take many months, so if it doesn’t happen for you immediately try to stay patient.

How much are you standing and walking around? JC’s surgeon wanting him standing and walking constantly, this was to help with draining, pressure and reduce inflammation. Even a couple laps up and down the hall every hour might help. GENTLE looking right and left (like a couple inches at most) may help get the swelling down.

My husband is almost 3 months post surgery. He has been chronically ill for many years so we knew this would be a longer recovery than it is for most, but even then it’s been a long/hard recovery. He still gets highs and lows, and overall he is doing more than before surgery. If you ever feel like reading it, Jules included a link to my full post. It’s super long. Super long. You can probably skip to the last 10 entries to read about his post-op.

@Jules, JC was told no massage or lymph drain for 8-12 weeks because of the C1 shave. For only a styloidectomy it would have been much sooner, I think 4-5 weeks.

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Thank you for your response. That makes sense! The swelling is very much still there, will try and be more patient with the recovery process haha. I guess I need to prepare myself for a rough couple of weeks ahead. I am finding it so overwhelming and off putting with the whooshing and vision issues still present.
And thank you for those suggestions! I am already sleeping elevated but will definitely start icing my neck. I’m really interested about trying the self lymphatic massages - i will check with my surgeons to see if it’s safe to do!

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Thank you for your response! Your explanation has helped calm my nerves a little bit! That’s good to hear your husband has had some improvement and reassuring to know things did get a bit worse before getting better.
I’m slowly building up my walking/endurance. For the first 2 days I was bed bound, but then started doing walks up and down the hospital ward. I went home from hospital 5 days post op and have since gone for 2 small walks every day and tried to be up and moving every 1/2 hour as I was directed by the hospital physiotherapist to. I am doing very small gentle head movements as my shoulder is really sore and it helps with the pain.

Did your husband have other vision changes than visual snow? My visual snow appears to be gone but i’m getting worsening of pulsing vision (my eyes are pulsing in line with my heart rate) and flickering vision when lying down.

What was the worst point in your husbands recovery? So far for me day 7-8 post op have been the toughest.

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Thanks for that info @Val7426 !

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For JC so much of that rings true. He was also bed bound for the first couple of days, he couldn’t lift his neck. Thankfully someone warned us of that, or else it would have been reallllllly scary. He was discharged on day 5. So much of what I had read was day surgery or 1 night in the hospital. In some ways we weren’t fully prepared for so long.

The swelling for the first ~2-3 weeks caused all kinds of weird and wonderful side effects. He started taking prednisone after being discharged (maybe 10 days post op?), and got to day 5-6 before I caught a terrible cold and he had to stop because it can lower your immune system and he wanted to avoid getting sick. But I think that might have been enough to stop him from spiralling with inflammation. His eyes weren’t pulsatile, but he does remember the soreness in them like they were inflamed.

I’d say you’re right in the thick of it. Although once you start moving around more expect some other temporary annoyances. You’ve had muscles in your neck and spine removed, so as you get more mobile there may be compensation from other muscles that cause neck/shoulder pain, headaches, etc. But as you recruit and strengthen surrounding muscles that should all go away. JC started physio at the 5 week mark. Mostly gentle stretches but it was enough to keep things from seizing up.

Keep us updated as you can and good luck!

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Yeah it is scary not knowing things in advance. I was in the ICU for the first night which was a bit unexpected, but they apparently do it for precautions with this type of surgery. I was told to expect 3-5 nights in hospital. It was initially really painful to lift my neck, now it’s only a little bit painful and I’m completely off all pain meds now.

It definitely sounds and feels like I’m in the thick of it now. I haven’t been offered anything like prednisone for the swelling, but I’ll ask about it at my 2 week post op appointment. I am noticing more improvement in some aspects but still having intense whooshing and ongoing vision changes. I’m going to get my eyes tested today to make sure everything is okay in that aspect. Pre op I had optic nerve sheath fluid distension but no optic nerve swelling, so I’m hoping it’s all okay given my vision changes are more frequent now.
As for the whooshing I think i have an explanation… I remember my INR saying ages ago my transverse sinus has developed a pocket/balloon outside of my stent and when the blood flows into there it can produce the whooshing/pulsatile tinnitus sound. Although he said he wasn’t willing to fix it due to unnecessary risk putting a stent inside my stent, so i guess I’ll need to learn to live with it!
This recovery is bringing back some memories from when I got my transverse sinus stent, my body took at least a couple of weeks to adjust to the new blood flow - although this recovery is a lot harder, longer and more painful haha.

I’m hoping to start physio as soon as I’m cleared to. My physio has a lot of knowledge with this surgery so I know I will be in good hands!

Thank you! I’ll continue to update when I can :slight_smile:

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Hi Stingray,
Thanks so much for posting your really interesting post-surgery report. It’s ever so helpful to hear feedback like yours. Very sorry about your negatives, but does sound really promising with your positives at this early stage. Hope you post again with updates! Feel for you very much as some of the negatives you’re experiencing sound truly rotten. Wishing you all the very best for speedy recovery.
Out of interest, are you in the UK? I only ask as at some stage it’s possible I may need a styloidectomy and C1 shave and possilbe hyoid horn shave. It seems here in the UK that of the very few surgeons in this type of surgery, one my do the styloidectomy but not the C1 shave - and another hyoid area. But it sounds like yours did the styloidectomy and the C1 shave in the same operation. If you’re in the UK, would be very interested to know who did it please!
Take care and all the very best.

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I’m glad you’ve found me sharing my experience helpful! I know I definitely find it helpful when I hear other people’s stories!
Thank you for your well wishes! I’m day 9 post op now and my vision and whooshing is somewhat improving. Getting there very slowly haha.
Sorry I’m not in the UK, I’m from Australia. We have the same problem here - I think there’s a small handful of surgeons here. But yes I had 2 surgeons doing my surgery and they did everything all in the one operation. I hope you’re able to find someone to do both for you! If you aren’t already in the group you could try joining the Jugular Venous Outflow Disorders group on Facebook, there might be more Dr recommendations on there? Wishing you all the best :slight_smile: :grinning_face_with_big_eyes:

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I’m glad things have improved a little @stingray , patience definitely needed, sending you hugs :hugs:

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Congratulation on your surgery. Who was your surgeon? Thats a dream of mine to now have bloodpoolign anymore and no more brutal brainfog and fatigue !

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@stingray is in Australia, @Matyas.