@TML @Isaiah_40_31 I suggested PDE5 inhibitors (viagra-type drugs) to my doctors since they are used for pulmonary hypertension. It may help some of the men out there or the women who can’t use estrogen. The idea is to help vasodilate the collateral circulation so that the brain can be drained more easily. It may be worth a shot for those suffering with this awful condition.
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Interesting suggestion, @Garden_Smurf. I have actually been thinking that if Estrogen helps reduce symptoms in women w/ IJV compression, what would help men? I also didn’t consider women who can’t take estrogen so I’m glad you brought that up. Thank you for the suggestion of PDE5. I hadn’t heard of it before.
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Interestingly, enough, my symptoms began when I began to not have periods. I tried hormones initially, but they did not work. I’m so glad they worked for you! Maybe this should be the first line of battle for women of perimenopausal age?
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I’m sorry HRT didn’t help reduce your symptoms, @Luckee7. It is interesting that it has helped others though.
I was reading another post from @Garden_Smurf where HRT took away many symptoms. Hoping to hear from her with an update!
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@Luckee7 @Isaiah_40_31 @ROkhuysen @Jules @TML @Bmmac
Hello there. I am happy to say that I got my surgery on 1/14/2026 with Dr. Hepworth. He removed my RIGHT styloid from the base of my skull, nicked a piece off my C1 and widened my right jugular with a big collateral vein that was coming off it. He said he had to do that widening because the jugular still looked too narrow. He also removed some benign nodes.
I know it is early (I am post-op day #9 today) but I can look to my right and downward without passing out and for some odd reason, the chronic LEFT shoulder pain I have had for 4 years is totally (I mean totally!) gone. Hepworth says it is “less overflow abuse from the left jugular foramen contents”. I had no idea that the left shoulder pain was related to all of this.
Although I have not been able to sleep laying flat yet (which is high on my wish list), I am sleeping much better. I actually feel rested when I wake up–probably because I am able to side-sleep now that I don’t drop by heart rate when I roll onto my right side. My face is still swelling a bit when I sleep but my right neck is still swollen so I don’t expect it to be normal just yet. The thing that really bothers me the most is my right ear tinnitus which was so loud when I woke up from the surgery that I thought I might go deaf! It is still pretty loud but Dr. Hepworth says it could take 6 weeks for it to calm down. I hope he is right because it is quite loud and hard to fall asleep.
@Luckee7 Regarding the question about the estrogen replacement–I improved enough to actually rest my head on a pillow sitting up but still could not look to the right without getting very dizzy and I still had to sit upright to sleep. It is possible that the estrogen is keeping my collaterals from collapsing. So I was better on estrogen/progesterone, but still with poor quality of life.
Thanks to all of you here who have helped me through this. I really appreciate it!
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Awesome experience
I am confused about the widening of the IJV with the collateral. Did you mean that the collateral had to be moved off of the IJV?
Hope lots more healing to come 
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HOORAY that your surgery is behind you, @Garden_Smurf & that you’ve already got some notable improvements.Tinnitus flares post op are usually due to the swelling in your face & neck & as Dr. Hepworth noted it may 6 weeks (& I’ll add, “or more” as it can take more than 6 weeks for post op swelling to go away significantly), for it to settle down & become quieter. It may never go totally away but hopefully it will be much more tolerable before long. I’ve had that high level of tinnitus volume so I completely understand how annoying it is. Mine did reduce in volume after my ES surgeries but it never went away completely.
I had to sleep w/ my head elevated for 6 weeks post op after each styloidectomy & that was w/o IJV decompression. After my IJV decompression (3rd surgery) I only had to keep my head elevated when sleeping for a couple of weeks. My IJV compression symptoms were very minor compared to yours though.
Does icing your neck help reduce the tinnitus at all? If not, it’s probably deeper level swelling that isn’t being helped by the ice.
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Dr. Hepworth said that he did venoplasty with one of the medial collaterals (he sutured my IJV). He said that otherwise the IJ would have been “frustratingly small when it was all said and done”.
I think he basically widened the freeway for me. I didn’t expect this so it really scared me when he told me this.
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No, unfortunately, icing doesn’t do much.
I am starting to have numbness on the right side of my tongue today. It is annoying but not terrible. Any idea what this mean?
Wow sure you were in shock. I looked it up and yes a venoplasty…
Had you had any symptoms of issues with Carotid? TIA or just a finding it when he got into the surgery. Did it Show up on CTA?
Great that was corrected. 
I’m so pleased you’ve been able to have the surgery @Garden_Smurf , it sounds scary what Dr Hepworth did with your IJV but hopefully that’ll give you the best chance of symptoms relief… Nice but weird that your shoulder pain the other side has improved, could be as Dr Hepworth says or otherwise we’ve occasionally had members who’ve had cross-over pain.
Your tongue numbness could be the hypoglossal nerve being a bit irritated after surgery, maybe there’s some swelling going on which has set it off? Hopefully that’ll wear off soon… 
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@Garden_Smurf - I had tongue issues post op related to my glossopharyngeal nerve which can affect the back 1/3 of the tongue. Hypoglossal works on the other 2/3 from what I understand. If it’s your whole tongue, it could be both nerves.
I’m sorry ice isn’t helping. Are you sleeping w/ head elevation? Dr. Hepworth Rxed dexamethasone for me to take for a week post op. It helped a lot w/ my post op swelling. You might want to look into that or prednisone. Dexamethasone has less side affects from what Dr. Hepworth told me.
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@Isaiah_40_31
Yes, I am having the problem with the hypoglossal nerve weakness. It has improved greatly since surgery. Still talk a little off but so much better. Now I am understanding that the nerve is just waking up and this is why my tongue is a little tingly/weird feeling and food tastes off on that side–like bitter or sometimes decreased taste.
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I feel soooooo good today (post-op day 10). I am thrilled. I am willing to sit up to sleep because I am getting very good sleep now. I had forgotten what it felt like to feel refreshed in the morning.
Can’t thank all you guys enough, @Jules @Isaiah_40_31 @Bmmac @TML @ROkhuysen !!
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@Garden_Smurf So happy for you!!
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That’s brilliant, long may it continue 
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This is awesome news. Sure it will only continue to improve
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HOORAY!! I hope that trend continues. Just a gentle reminder here that some “backsliding” can occur as nerves heal so don’t get discouraged if you have some rougher days ahead. What you’re experiencing now is a foreshadowing of your future recovery!
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Wonderful to hear!!
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