One month post op

Symptoms and Treatments
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Hi All!

I am about 1 month post op now from my C1 shave, styloid removal, accessory nerve relocation and digastric muscle division to decompress my right IJV. So far I have no real improvement in symptoms, I am pretty close back to what my baseline pain was pre surgery but I know it can take months for benefits to show. To clarify the main symptom we were trying to target here was upright head heaviness/pressure and neck pain. A lot of my symptoms sound more cervical instability related but luckily my neurosurgeon is also a cervical instability expert and we could find no evidence of instability. I had a slight misalignment on my scans at C1/C2 however I’ve been told this could potentially be normal for me and incidental. The one difference I have noticed is pre surgery if I tilted my head to the side it would feel like it’s going to fall off. That sensation is now gone when tilted both sides (I’m compressed on my left side too but funnily enough it doesn’t cause symptoms when tilting to the left). I had always convinced myself that I had CCI because of this sensation but obviously my VES was causing it somehow. While I see so many success stories of people quickly getting relief I’m remaining optimistic that I will improve over the coming months. I’ve seen a video of my IJV beating very strongly that the surgeons took which was very interesting and they are both confident in symptoms improving even though pre surgery they were extremely hesitant to give any comment on outcomes. I’m going to see a neurophysio shortly to begin working with them instead of my usual hypermobility physio (don’t have EDS, just hypermobile). I believe I could benefit from a lot of proprioception training and muscle imbalance issues caused from guarding over the years so I think a neurophysio will be more successfully with that.

Anyway, any stories people have to give of their own recovery or words or wisdom, always much appreciated.

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@Benwt - I’m glad that you have at one symptom that has improved. That’s a step in the right direction. You’re so right that it can take months for vES symptoms, in particular, to begin gradually resolving. It will be interesting to see if you’ve noticed further symptom reduction by 2 months post op. I expect you will.

I’m really glad you’re going to be working w/ a neurophysical therapist. That should help a lot especially working to rebalance & strengthen muscles that have been slacking or over-working due to muscle guarding caused by your vES.

If symptoms remain unchanged after 4-6 months, it would be worth considering getting the left IJV decompressed even though it seems asymptomatic presently. A number of our members who’ve had bilateral compression have ended up with better results when both IJVs were decompressed even though the first one had good blood flow through it.

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Thank you for your response as always!

All surgeons and the interventional radiologist have said they hear likely no benefit in ever having my left side decompressed. The vein is hypoplastic so likely has just never developed from birth and they all agreed that decompressing likely wouldn’t create a vein. So for another 20k out of pocket I don’t think I’d risk it. On my 3d imaging there’s basically not vein on my left it’s a bit odd to see lol.

I am hopeful that I will continue to improve month by month. I just wanted to be able to sit at a desk properly without discomfort. (I had a very good career before all this which I’ve had to give up for a remote job and financially I’m struggling massively).

My neurosurgeon previously said at the 3 month mark if my heaviness still persists he wants to try prp into my cervical ligaments (although denies there being any instability and when I asked, he said he’s seen basically no success in cervical PRP), where as ENT surgeon he wants to wait the full 6 months to recover.

I do think it’s possible that a lot of my symptoms and head heaviness is due to residual muscle guarding so hoping that the neurophysio I see is helpful and hopefully researches the conditions before I see them.

It’s been a long journey to say the least but I’m hoping this bring me significant relief I. The long run

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I’m glad that your surgeon checked your IJV was re-open, that’s reassuring, and hopefully with time you will see improvements, it’s good that you’re keeping positive! Interesting with the neurophysiotherapist treatment, it’s possible that muscles are still causing issues- @TheDude , @TML & @vdm have all posted about how muscles can become over or under used which can affect symptoms & may well need retraining after surgery, not just in the neck but right down the spine…
Praying that things do improve for you :folded_hands: :folded_hands:

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Question: Your neurosurgeon does regenerative medicine? Can I ask who that is? He wants to do PRP in ligaments but not the joints? Thx.

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Yeah they’ve shown me the video that the jugular was pumping very well. I do think there is a muscular component to this as when this first started I was experiencing pressure in my head when upright but no neck pain etc so it seems over the past 3 years that it has developed into muscular issues. The only medication that helps me too is Clonazepam/Klonopin which is a muscle relaxant so that further backs up the theory. Of course I’m massively anxious that I won’t have successful results but I’m only a month out of surgery and everything I’ve seen said it can take months to improve things. Not too sure what to expect from a neurophysio but think it may be beneficial in training the muscles to act correctly again, the anxiety I’m feeling is massive though so any similar success stories would be great.

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My neurosurgeon is Dr Rao and yes I’m assuming in the ligaments not the joints but that’s only if I don’t get improvement from surgery

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@Brandy, @Benwt is in Australia so not close by. :weary_face:

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At five weeks now. Still no symptom improvement except for the initial being able to tilt my head to the side feeling with it feeling as if it’s falling off (strange symptom to disappear, I was convinced I had instability causing that). Today I have noticed feeling coming back into my ear and side of face which I had lost with surgery. So that is always a good win, hopefully it’s a sign that the pressure in my head will begin to ease soon too

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I’m sorry your head pressure is still such a problem, @Benwt. You are still in early recovery as far as jugular decompressions go, but I know that’s not encouraging. I hope, as you said, that the feeling coming back into your ear & the side of your face is a good omen of healing to come & easing of your head pressure. :folded_hands:

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No that totally is encouraging emphasising how early I am in the recovery. You hear a lot of stories of people with instant results but they usually have more symptoms than me. So when someone says it takes time to me it is encouraging. Both surgeons were amazed at how much my IJV which is a good sign, they’ve even sent me a video of it during surgery as gruesome as it sounds but it’s amazing to see

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Thinking of you, and praying that you do see more improvements, good that nerves are starting to heal with your ear :folded_hands:
Have a quick look at this post by @MGORNEAU , it might be encouraging
It’s a battle - General - Living with Eagle

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@Benwt, I hear you! I had bilateral styloidectomies December 9th and 10th. I am three months post op. I had severe head, neck, facial, and occipital swelling, pressure and pain on the right side.

It can be a long healing process’s for venous flow to recalibrate. Since your left IJV has been abnormal from birth, it may take your body longer to rebalance venous flow after surgery, so that might be something to keep in mind during recovery. If I didn’t know better there are times it feels like I am going backwards, but it is part of the healing process’s. The body has a lot of adjustments to make after guarding and compensating for so long. The longer the compression was present, the longer it can take to settle into the new normal.

Last week for the first time I woke up without any pressure on the back of my head and no noise in my head, what a great morning. When I got up the pressure never went above about a 4.

Today my head pressure is back up to :frowning: but we have a storm rolling in and that barometric pressure definitely increases the pressure.

It does get better. Sometimes the improvements are small and there can be backtracking, but those moments of relief are a glimpse of what your body is working toward. I’m glad you found supportive surgeons. They sound great.

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@Benwt I forgot to mention I did start sleeping up right about three weeks ago as suggested on the forum. It does seem to markedly help with relieving the head pressure throughout the next day. If you are not already it might be worth trying.

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Thank you this does make sense. I am noticing some slight pain at times on my left side so could possibly be the blood flow trying to work things out. I’m at my worst when trying to sit at a desk and find I get a lot of coat hanger pain and weakness seems to be causing my head to go into odd positions which I’m sure isn’t helping. I think this aspect is something that physiotherapy may need to tackle.

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I too am worst while sitting at my desk, I actually asked ChatGPT about that and it explained why really well. I run a lot of my symptoms through AI, it is very informative and explains well. My right shoulder is much lower than my left from the years of compensating, it explained why and provided exercises based on post op date that should help correct this over time.

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That makes sense. I often notice my head pressure is very minimal when I’m standing and walking. It’s when sitting at my desk the same as you that it is worse. I think years of guarding has created muscle imbalances throughout my neck. When this first started about 3 years ago I had constant head pressure even while standing but no neck pain or range of motion issues at all. They originally thought CSF leak and I went through that whole testing but ultimately the conclusion was a csf leak wouldn’t improve if I was upright but resting my head. I’ve been seeing a hypermobility physio for 2 years to work on neck strengthening and never found much improvement, we did think CCI for a while but it’s pretty much ruled out now. I’m seeing a neurophysio tomorrow which should be interesting, they may be able to see which muscles really need working on. My ultimate goal is to be able to sit at a desk again without discomfort so I can get back to work normally.

Can I ask how you are finding recovery and if any symptoms have gone away, in addition to what symptoms you had?

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I hope that your physio appointment is helpful tomorrow, let us know how it goes!

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@Benwt Of course, recovery has honestly been frustrating. It’s very up and down. I’ll have days that feel encouraging, or mornings that start off great and then swing the other way. Knowing it’s part of the healing process doesn’t necessarily make it easier after suffering for so long, you just want your normal back.

For example, today I woke up not feeling great, then once I got moving I actually felt pretty good and the head pressure was minimal. Then out of nowhere, while working at my computer, I got hit with pretty intense lightheadedness and brain fog. A couple hours later that passed, but the head pressure came back.

It’s still too early for me to say anything is completely gone, but there are definitely improvements. I don’t notice the pressure behind my eye nearly as often, and the right-sided facial swelling has gone down enough that other people notice. The constant “underwater” feeling on the right side of my head is much less frequent now. I also sometimes wake up without pressure in the back of my head and no noise (clicking/buzzing), which still surprises me when it happens.

My symptoms were mostly right-sided. It started with facial nerve pain, swelling under my eye, tinnitus, intermittent swallowing issues, then about a year later progressed into crushing head pressure, pressure behind the eye, neck pain and lightheadedness. Over time it became more intense, with visible positional jugular swelling, positional arm discoloration and that constant full/muffled head feeling. It was so painful and debilitating.

Before surgery I did not have good days. Now I do.

I didn’t notice much improvement in the first couple months, so I hope it helps to know that. I do think your surgery was a success, it just takes time.

I would be really interested to hear what the neuro physio says.

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Interesting and I hope things continue to improve for you.

I’ve just seen the neurophysio and it was very interesting. Did a number of tests and we basically figured out my proprioception is terrible and I have no core strength. These two things are likely making things worse. Brings into question how much eagles syndrome was causing my symptoms but they did say potentially the years of having this has causing muscle imbalances and guarding etc which has damaged my proprioception. They did also say potentially there’s some underlying instabilities causing it but probably more muscular than structural instability. I have exercises to do with a laser on my head if you’ve ever seen those lol aswell as core strengthening and hopefully that improves thing. My previous physio was very hypermobility driven so everything was just focused on strengthening the neck but the neurophysio explained that because i had crap proprioception and likely have muscle imbalances as a result of that, all I was doing was doing was just strengthening the imbalances. So yeah I’m hoping that with physio I can move past this, but also hoping that I do still notice some more improvements surgically as I recover.

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