@Jacqui agree re knowing about the nerves. I’ve noticed my right eyelid is dropping, which if I Google can be a sign of nerve damage. No one will acknowledge it though. Hoping this surgery (which is that side) might fix the vision after all, but also very nervous it might not. I’ve started to get pain again on the side that was operated on, since hitting the cardio again, which makes me think my cervical spines playing up. It’s all complicated. Hoping everyone gets resolution eventually!
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Hmm, yes that eyelid does sound possibly nerve related.
As for the ongoing pain when exercising, I guess it is normal to still get pain after an op, for quite some time. Things will be extra tight when healing but hopefully it will calm down eventually.
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@BabzieAM the facial nerve can be affected by the styloids, so could be causing a droopy eyelid; is it on the side still left in, have I got that right?
It’s up to you, but given you’re still not that long our of surgery, & that you still have some strange symptoms which haven’t been fully diagnosed, I’d go really easy on the exercise until you’re fully healed from the second surgery- I know it’s a pain to not be able to do everything you want to do, but for the sake of your health and nerve damage it’s worth just taking 6 months out for the strenuous stuff, it’s not long in the scheme of things…Otherwise you’ll never know if the surgery has worked or not, & what’s being caused by what…
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@Jacqui - A FIESTA MRI shows nerves. I don’t know if there’s someplace that does those in the UK that would be easily accessible for you though.
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I couldn’t get the CTV so doubt I’d be able to get that. Surgery on side 2 in under 2 weeks, so will see how it goes.
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Thanks @BabzieAM and @Jules. I just crossed 3 weeks mark and here is the summary:
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In terms of recovery from the surgery, it is going okay. The scar is healing well. One lasting problem of the surgery is the numbness, burning and some pulling sensation around and behind my ear and along my jaw. I had had intermittent numbness around my ear before the surgery. Though it increased significantly, I (want to) see it as a positive sign indicating that we are making interventions to the right spot.
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In terms of my previous symptoms, I got some benefit but it is not life changing. Details in the order of bothering my quality of life:
Brain fog&disassociation - improved a bit
Feeling blood circulation in the head, followed by head pressure and vertigo attacks (like brain is floating) - These were really bad. Gone since the surgery!
Bounding pulse in the legs - improved
Throbbing of the top of the head - almost no change
Right migraine -unfortunately worse and more frequent
Occipital pain in the head - almost no change
Frontal head pressure - improved
Orthostatic intolerance - improved
Pulsating vision - not much change
Ear pain/numbness/itching - worse compared to pre-surgery but improving. My right side was completely numb after the surgery. I think the nerves are irritated during surgery and will need time to improve.
Right Tinnitus- worse
Left Tinnitus - no change
Hoarseness - no hoarseness episode after surgery yet, which is good.
I think I need to wait for a few weeks/months for the nerves to heals and to see long term effects. Then I can consider my next move, which might be left styloidectomy as there is almost no flow through my left IJV. However, it is not my dominant side so not sure how it can help but the surgery is not too bad so I can give it a go. Or I can think of ballooning or stenting the right IJV. Do you have any opinion (or is there any convention on) which one to prioritise: (1) Balloon/Stent right IJV that I had the surgery for, (2) Left styloidectomy?
Having said above, I have been having difficulty to hold my head up without supporting it (not using a neck brace but holding with hand when I sit on a table etc., walking is no problem) and I am hypermobile (probably hEDS), so I am afraid CCI has a role on my symptoms and the styloidectomies might not be sufficient.
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@kemaloksuz That’s really positive that you’ve had some improvements! I had a lot of aches, twinges & numbness that didn’t really subside significantly until about 6 weeks.
At 10/11 weeks I still have some pulling and neck pain (I think more my neck misalignment and weakened muscles - according to my physiotherapist).
I also have some numbness but I only notice it if I touch the area.
I saw some pictures of the procedure and they cut and pull the area right open. It’s a significant trauma and nerves will take time to heal. I think it can sometimes take a year to full be normal again & I believe nerves also cause some discomfort when they heal. I wouldn’t worry about it too much at this stage.
Also I’m sure it all affects the muscles etc of the neck which again will need restrengthening. When we have CCI and other pre existing cervical issues, I guess these will flare up a bit.
My wobbly vision and other visual issues/detealization are still really bad.
I’m back in just under 2 weeks to get the other removed. I’m a bit nervous, as I haven’t had the CT scan, but he did a good job last time. I don’t think i necessarily have IJV compression, but I’m sure something is being compromised- maybe vagus nerve or nerves that link to vision. I’ll post back re the outcome at a later date, in case it helps anyone decide on their next move.
I did start physiotherapy at 6 weeks and have been doing high impact cardio and weight training for 4 weeks now without issues. Quite upset at the thought of having to stop again for 6 weeks. I am finding doing gentle neck stretches and massaging the area really helpful. I didn’t start until 5-6 weeks though as I wanted to let everything settle.
Hope you continue to see improvement.
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@kemaloksuz I’m glad that you’re seeing some improvements after surgery; recovery with nerves especially can take months, even up to a year as @BabzieAM says, so it’s important to be patient and to focus on the positives!
I was warned off having a stent (although I have been very lucky & removing the styloid has been enough to stop the vascular symptoms), as they can cause pain & can’t be removed once in. There are some research papers I think which discuss the pros & cons of doing stenting, the latest one posted by @Chrickychricky is written by some US experts so is worth a read:
New paper by Fargen, Hui and Hepworth, et al - General / Research Papers - Living with Eagle
It’s certainly not something to rush into & if you’re able to get another CT venogram to see if your IJV has opened up after surgery would be worth doing…Normally I’d say have the second side removed & see if that helps, I think waiting a while as you said is worth doing as you have CCI. Some members have not found they feel their neck is any more unstable after surgery, others feel the surgery may have made it worse so see how you feel in a while. Hope that you continue to keep seeing improvements 
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@kemaloksuz how are you doing now?
@Jules Thanks for asking. I am not completely healed but no regrets with having surgery. I am still spaced out and have brain fog & headaches etc. but the doom feeling that I had been having multiple times daily before the surgery is very rare now. There are even days I don’t have it at all. Also some symptoms such as head pressure decreased notably. Daily anxiety decreased significantly. So, I am happy with the outcome, my quality of life increased and I am hopeful as I am only 6 weeks out. Surgery-wise, I can feel that inside is swollen and around my ear is still painful. I just had my post surgery follow up with Mr Hughes and he confirmed that it is still swollen inside and this can take around 6 months to heal. So, I think I’ll wait a few more months before going for the other side (Mr Hughes told that he could do that if I want to have it). I was also recently diagnosed with severe insulin resistance, so meanwhile I will keep track of my diet and see if it helps. I might also look into CSF Leak soon (my symptoms increase upright from the beginning) but not sure about how much I should rush into this as it requires a lumbar puncture, which is an invasive test and I am hypermobile.
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@kemaloksuz - How great that you’ve had some good results from your surgery already! No need to rush into the second one. I had mine 9 mos apart & others even longer. Giving your body some time to heal from surgery #1 before it’s trying to deal w/ surgery #2 isn’t a bad thing.
I’m sorry you may have a CSF leak, but you’re right, a lumbar puncture does come w/ risks, too, so best to avoid it if possible. CSF leaks do heal on their own sometimes especially if the cause is eradicated. Since IH is one of the causes, perhaps your recent ES surgery will allow a previous leak to recover as your IH reduces.
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That’s good news, feeling better in some areas already! I’m glad that Mr Hughes was realistic about how long healing can take, many doctors gloss over this…We have had members who had CSF leaks caused by Intracranial Hypertension, in turn caused by IJV compression, & once the compression is dealt with things settle down, so I think you’re wise to hold of the lumbar puncture to now. Take care of yourself and hope things continue to improve
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@kemaloksuz Im so glad you have had some really good improvements! I second holding off the lumbar puncture for now. I wondered too about a csf leak, but I had a LP last year that they messed up! They had to do twice and I have had issues with sudden intermittent sciatic pain since. I also wonder whether it could have caused one (I had it done for IIH investigation not leak).
It’s weird as I have virtually no numbness from the second surgery! I have got blurry vision in one eye though and been having panic attacks. I wonder if the post surgery trauma for me is hidden inside, especially as I had 2 surgeries 12 weeks apart. I feel like I didn’t even have surgery again pain & numbness wise this time! I have been told though that it’s a lot of surgery in a short time and actually if you have some swelling still then there’s probably benefit from holding off longer. I haven’t had a voice for 11 days now from the intubation and GP said it wasn’t long ago that I had the last one and it might take up to 6 weeks. I’m just impatient!!!
Wishing you more recovery success. 
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Hope you’re all well!
I’m 2 weeks post second op today and suddenly have horrible head pressure. I haven’t had this since my first surgery. I know some of you had IJV compression and wondered whether you had any flare ups in the early recovery? It’s freaking me out a bit.
Thank you. 
Thank you, I only just spotted this message whoops! I will look into whether anyone does it in the UK.
Sorry to hear that. My head pressure is still very up and down. Just had one side done so far. I imagine you still have a lot of swelling to contend with, so soon after surgery
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Any stress, exercise or heat did make my head pressure come back after surgery, it could otherwise be swelling back if you’ve maybe overdone things a bit? Hopefully it’s only temporary @BabzieAM
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