Just wanted to note that I had second decompression surgery for IJV ES with Dr. Constantino on March 31st, and everything went well. Pretty much immediate significant symptom relief on left side that was operated on. Previously had major oscillopsia, imbalance, visual disturbances, position double vision when pressure on left triangle, esotropia, head pressure, left shoulder lack of ROM, neck ROM constraint turning left. All have improved. Still feeling kind of woozy when walking as my brain recalibrates after so long (6 years) fighting these symptoms. Transient double vision still as the area is still swollen near the scar, but seems to be lifting slowly.
Had a question. Has anyone that had the extraoral method surgery had kind of a lump under and near the incision after surgery? I did not remember having on right side, but I can feel it under thrle left side this time. Probably just swelling under skin but I was curious.
Great news about all the positives you’ve already gotten from your surgery, @Dave! Don’t worry about the lump under your incision. It’s common & will flatten out as the incision heals. I learned that when the transcervical incisions are sutured, they’re intentionally done so the incision is raised, as that allows it to heal flat vs indented. I would have never guessed that raising it up like they do would be necessary to create a flat incision!
I had this for my first surgery. Definitely thought they messed up the “fold” or something. And it wasn’t right on the scar so I thought something was amiss. But just as @Isaiah_40_31 said, mine flattened within a couple months.
Also, happy to hear your surgery went well. Especially the second time around. Congrats getting through it.
I had my first consult with Dr. Costantino today. He mentioned that only 10% of his patients need both sides done, so you’re in that lucky club. He said he expects that I will need both sides done as I’m 90% compressed on one side and 85% on the other. If you don’t mind me asking (no rush if you’re not feeling well!), how long did you wait between surgeries? And after your first/“dominant” side was done, did you experience any symptom relief? Does this second side feel like a more significant improvement? Thanks so much, and wishing you a very speedy recovery. – tara
I had the first in July 2025 and the second end of March 2026, so 7 months and and a few weeks. After the first side, the symptoms specific to that side and the general mental fog improved dramatically. Literally it was like being a person cut in half as far as symptoms. My issues were around balance, blurry and shifting vision and eye muscle palsy, physical restriction of arm and neck movement, head pressure, fatigue etc. A little unique maybe? After the first side is done, the blood dynamics and pressures shift. My unoperated side got a bit worse or at least it was more noticeable, because the right got so much better. In the time after the second surgery, which is short, the eye symptoms on the newly operated side got much better, balance (standing on operated side) has returned, physical restrictions are gone. What is left at this point is a general “spacey” and heavy head feeling, I believe in my case because any vestibular input change forces your brain to re map the relative inputs, even if the inputs got better. Also some of the oscillopsia in certain head motions on operated side is still there. But I had the same on the first surgery, it just takes some time for it all to settle down.
They told me about 2 of 10 need the other side. Lucky us. Dr. Constantino and Dr. Tobias and great though, I’m really glad it was them.
Great to hear that you’re doing so much better all around since your second surgery, @Dave. Patience during recovery is so important as you noted. I hope your remaining symptoms continue to resolve as the days pass.
Thanks guys, that’s what is so hard to remember…it takes time to heal. I want everything quick, but it does not work that way. Things changed over months on the first one, and you hardly notice it until one day you realize X or Y symptom hasn’t happened in a while…you just forget.
I would say thanks to both of you. In this world there are few people who are as consistently supportive to others who are suffering and scared as the two of you. Truly elevated souls.
I had this exact same experience, @Dave. You described it perfectly!
Thank you for your appreciation. @Jules & I have been a mod team since 2017 (she’s been a mod since 2015). We both were diagnosed w/ ES in 2014 & found this forum. We love being able to give back what we received when we were concerned new members here.
Yes, I can’t remember exactly how things were, it’s been a while for me though! Sometimes I read through old posts & think, I don’t remember that!
I would never have got the surgery if I hadn’t found out about IJV compression & an experienced doctor near me from the site, so it’s good to return the help to others, but thank you for your appreciation
