That looks brilliant! It looks like it has re-opened pretty well, so it’s surprising that you’re not feeling the difference, but hopefully if you do have the other side done it’ll help!
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@Isaiah_40_31 I’m certainly hoping so! I’ve noticed some symptoms proliferating on my non-operated side so perhaps that will help sway the decision to also have that side decompressed.
Good question! As of now I have not – I don’t have too many other symptoms other than general fatigue/dysautonomia/MCAS so I haven’t had more specialized imaging, however I think following the left side being decompressed, I’ll revisit that if necessary. I’m not the typical patient (in that I don’t have EDS, to my knowledge), so perhaps I’m being spared from the other compressions that many others have. But good to double back on if necessary!
Also including the radiology report which certainly backs up needing the other side done
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Agreed about the radiology report validating the need for another surgery. Gotta get both those IJVs functioning fully! Your brain will thank you!
It’s also interesting to know Dr. Costantino uses surgical clips. I have them (one on each side) & have had no problems with them, but some of our members have had clips put in that are poorly placed & are now causing problems.
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Certainly looks like the other side would be good to get done…maybe you could ask on our behalf about the necessity of the clips and if he’s ever had patients have issues from them? 
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@Isaiah_40_31 @Jules Forgot to ask about the clips but I will the next time I get a chance! Went over so much in the last visit that it slipped my mind. I’ll blame the remaining brain fog 
Dr. C offered to do the opposite side in just over a month, which would be about five months post-op from my first surgery. He was pretty impressed by my cognitive progress so far, and most if not all of my shoulder weakness/ROM limitations are back to normal which he was happy with. Really hoping my dysautonomia can be relieved a good bit more by this second surgery cause that is my biggest limitation right now (and feeds directly into my fatigue + MCAS). Had some improvement with it (especially with HRV) after surgery #1 (in that good window between Weeks 4-7), but I’m back to my pre-op baseline, if not worse. But hoping that changes!
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I’m really glad to know you may have your second surgery in just over a month, @dreamliner. Have you committed to that or are you still just considering it? Please let us know your surgery date when you have one.
It’s great that you’ve had some significant gains from your first surgery but I am sorry to know your dysautonomia is potentially a bit worse. Being hopeful that the second surgery will knock that problem out all together is a good. I am hopeful & prayerful that will be the case. 
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Good that Dr C has noticed some improvements , hopefully things will permanently improve with your second surgery
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@dreamliner I’m so glad to hear that you have had some improvement from your first surgery. I am really curious about the clip and looking forward to hearing about what you find out. What dysautonomic symptoms are you having?
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I’m also curious about the necessity of cutting this nerve. If it was standard protocol for all surgeons who were removing the styloid from the skull base using the incision at the ear, I would be less concerned. It’s not just Dr. Costantino, though. Dr. Osborne also cuts the nerve and does not repair it.
Has anyone who had surgery with Dr. Costantino regained full sensation to their earlobe post-surgery, restoring their ear to the way it felt before surgery?
No one has ever mentioned having a numb earlobe after surgery w/ Dr. Costantino, but we did have one member a while ago who had a lot of pain from her GAN after surgery as it wasn’t healing well after being cut.
Most surgeons, especially those who do vES surgeries w/ IJV compression only make their incisions in the neck, not up next to the ear, so the cutting the GAN is a moot point. I think the more you explore ES surgery, the more you’ll find that each surgeon has his/her own way of doing ES surgeries. Many have similarities but they aren’t all done the same way.
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@Isaiah_40_31 do you know why it is that surgeons doing more vascular cases tend not to make an incision near the ear, and I assume by extension aren’t prioritizing removing the styloid from the skull base? Is it not as important in jugular compression cases to remove the entire styloid?
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The skull base is accessible via a transcervical (neck) incision so styloids can be cut back to the skull base that way as well. Surgeons who do IJV decompression surgeries have much better visibility of the styloid, IJV/local vascular tissues, nerves, muscles, lymph glands, scar tissue, etc. that may be contributing to compression by using a neck incision than a small incision by the ear.
Most ES surgeons also use nerve monitoring to help them know when they’re close to a nerve so they can keep from damaging it & working through the neck helps that be more possible as well. That doesn’t mean nerves don’t get irritated during surgery, but it’s rare that any get seriously damaged.
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The surgery for IJV compression is often done behind the ear rather than in front of it, I’ve looked online for images of the GAN, some show it in front of the ear, but others show it behind the ear, so I’m none the wiser as to whether in front or behind the ear incisions make a difference with how much this nerve gets in the way! I guess the GAN might be moved out the way by some surgeons, but perhaps some feel it gets too much in the way, who knows! I have some numbness around the ear & corner of the jaw, but have always presumed it was possibly from the facial nerve- this & the trigeminal nerve have similar pathways…
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Hi @blue and @Isaiah_40_31 ! I had surgery with Dr. Costantino about a year and half ago & still have some numbness on the outer portion of the external ear and lobe as well as along the jawbone. It was really annoying at first and bothered me. It has improved a great deal since the surgery and seems to continue to improve; however it is still numb. I am not sure if I will get back full sensation; however, it is not so bad if I don’t and if it helped Dr. C keep the facial nerve intact , then it is worth it. I’d much rather have a bit of numbness than facial weakness. Also, I still have a sore spot under my jaw and ear. I think that nerve healing is pretty variable and am hoping that it will continue to improve. Dr. C never mentioned anything about a clip after my surgery nor was it mentioned in any report, so I’m not sure if I have that or not. My incision goes from about 3/4 inch below & behind the ear down the neck. The scar runs into the neck crease, so it’s not really noticeable.
@dreamliner I’m sorry that things haven’t improved as much as you’d hoped. It’s great that Dr. C can get you in for the second surgery so soon if you decide you want to do it. I love the way your images show the difference between the IJV before and after surgery. I even had my husband come and look to see the big difference. Please let us know what you decide to do moving forward.
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@vap - Thank you for the information about how you’ve recovered over the last 1.5 years. I also have a bit of numbness along my left jawline & some facial pain near the bend in my mandible on the right. I don’t notice either of those as long as I don’t touch them i.e. the numb sensation & facial pain only manifest when I touch them. My other nerve symptoms from ES are basically gone so these two little leftovers are a small price to pay for the big picture.
To encourage you, I had first bite syndrome that was quite significant for a year post op. It reduced in intensity as more time passed. Now that it’s been 10 years since that surgery, it’s almost completely gone. That tells me that our nerves continue healing well beyond the expected/suggested time frame.
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