As Jules noted, in bilateral cases the second side often makes itself more “visible” after the first side is removed. I know both Jules & I experienced this along with many others here. I think when both styloids are elongated &/or both ligaments are calcified, it’s hard to know which side is causing which symptoms. Some of your post op symptoms could actually be caused by your remaining styloid. You’re very wise to consider getting it taken care of sooner than later though most surgeons prefer to wait 3-6 months after the first surgery before doing a second one. That gives the first side a good healing head start.
Yes, IH symptoms pretty much gone now! If I’m very stressed I get a little bit of symptoms back, & when I’ve flown, one side is still a bit funny lying on at times, the doctor who operated mentioned maybe having a stent, but the side effects of that aren’t worth the risk for the minimal effects I still get. Hope that things keep improving for you…
I have bilateral ES and am awaiting surgery. I do have the classic symptoms (throat, neck, facial pain) but have over the last month or so been greatly affected by pressure in my head and eyes. This has driven me to the ER twice now. I have optic nerve damage but I had some when they checked about 6 months ago. I assume it is worse now but I don’t have confirmation of that. My vision gets blurry…sometimes worse in one eye…and I always have some degree of headache now. Sometimes it is horrible. I’ve had fluctuating blood pressure (usually 100-110/60, but getting up to 145/90 now just resting) and PVCs. My CT shows a somewhat compressed jugular…not sure if this is the cause. My ocular pressure (it was >30) was being controlled with Latanoprost drops, but last week the pressures were high again, despite faithful use of the drops. So they added a beta blocker eye drop (brimonidine tartrate) and I can see better now. This also removes some of the redness.
All of the muscles in my neck are sore and I get pain in my shoulders and arms. I also get lower back pain. Worst part has been the terrible fatigue though. I saw a rheumatologist yesterday for the first time just to make sure all of the joint pain and fatigue wasn’t related to my psoriasis or Crohn’s disease. The psoriasis is the worst I’ve ever seen it but the Crohn’s seems fairly well controlled. They recommended Humira for both, which may or may not be causing some of the joint pain, but it may get stuff under control. But, I can’t take this going into surgery. Wish I could have both sides done at the same time to hurry things along but I hear that’s not wise. I’m hoping that getting the styloids removed will put less stress on my body, which may automatically reduce the symptoms associated with the other issues.
In your case, I wonder if your post-op headache is related to inflammation or fluid retention. Are you spending most of your lying down? Could be that the nerves are still so irritated. Recently, I’ve noted that I can feel a sharp pain shooting up my nose, running between my eyes and into my forehead. Surely this is caused by an aggravated nerve originating in my neck, as I have no sinus issues. I also see red streaks running up my jaw toward my nose on occasion (just a weird tidbit that seems connected).
Hope with time you will continue to feel better!
Hi Jules, what were your ih symptoms?
Symptoms were dizziness, I felt off balance all the time & like I was drunk, I had brain fog, was really tired, & had very painful pressure in my head & ears, & pulsatile tinnitus. I would get really alarming feelings of falling, even when I was sitting, & some other awful weird feelings in my head, it felt like I might die, I can’t explain it exactly! It was getting to the point that I would have to give up driving because of the dizziness. Definitely glad those styloids have gone!
I definitely can relate to all those symptoms. Thought I was going crazy and was alone with those symptoms. So hard to explain to a doctor.
Just an update. Thing are getting better. The lip is still wonky but getting a little straighter. Puckering, laughing and chin protraction continue to cause some deviation of the lower lip. Saw the surgeon today and discussed this and he said that the marginal mandibular nerve may have been over stretched during the surgery, bit it is waking up and should come back. It will just take some time (I have heard this more times than I can count during this whole ordeal, LOL) I will see him again next month for another followup.
Just joined meditation classes, going everyday. Want to free my mind of all this stress and the anxiety this ordeal has caused.
The Neuroopthamologist: . I could see one more line so I’m now at 20/25 instead of 20/30. Eye pressure was reduced from 16 on both to 10 on the right and 13 on the left (9-21 is an acceptable range). The visual field test was normal but had some lost focus on the left. The nerve looks the same. The doc recommended I follow up with the neurologist. He was thinking of sending me for an mrv to see about my hypertension. But still stuck taking diamox until next month when I see him again or until the neuro changes the Med.
The neurologist: She was surprised to hear about me having this syndrome and having had this surgery. In her 30 year career, she had only seen one other patient of hers with it. Couldn’t even find the surgery code in the EPIC system. Had a clear physical exam. She’s sending me for and mrv, mri, mra of the brain and mrv of the neck, since my funduscopy is revealing of intracranial hypertension. So scheduled that for this upcoming week Had a neck X-ray done and bloodwork since she said the diamox might be causing alkalosis or acidosis. I am feeling systemically off with it so hopefully will get some answers.
I’ve included a picture of the scar. The surgical picture is graphic and not sure if you are comfortable seeing things like that.
Went to the surgeon today. He said the other one is calcified but not nearly as bad as the one he removed. He wouldn’t even consider taking it out for at least a year, as this surgery was a difficult one. Praying this one does not giving my grief and there is no need for that to happen.
Wow, I’m totally into your pictures! Your scar is SOOO thin! Rock on!
Any clue what that white thing running parallel to the ligament is? I’m so impressed they shared those photos with you. Had you asked for that?
I am so happy with the scar, definitely longer than the 1 inch scar the surgeon told me I would have. Once he got in there he realized there was much more to resect than he initially realized. I asked that question too. The white thing the doctor said was muscle tendon.
You are going to laugh at me but I honestly wanted to have my little bone as a memento of what had caused me so much misery for so long. But of course he said no to that ( Instead the thing is in the pathology lab). I had to pretty much beg for this picture, he said no at the first follow up and today, just gave in to my craziness.
Your pictures are TOTALLY AWESOME!! I love that your surgeon took pics (or had pics taken) during surgery. You got the same response regarding keeping your styloid that I think we’ve all gotten - can’t keep it…has to go to the path lab. I would ask, to what end? I bet it just gets dumped in some sort of hygienic trash can there. Many long years ago, my sister had her tonsils out (1960s). She wanted to keep them so they were put a jar of alcohol & sent home w/ her. It used to be ok for doctors to honor those requests.
So glad you had a positive check up & are seeing improvement in your lip function! The best possible outcome for you would be that the other side remains asymptomatic. I’ll pray for that as well.
After I had my surgery I was at one of my daughter’s basketball games and another father noticed my face and smile was droopy. His has always been that way as long as I’ve known him but I never inquired as to why. He started telling me his story about having a benign tumor removed from his glassopharyngeal nerve. There was not enough nerve left to reconnect so he is like that permanently. He said they rewired some of his nerves to make him more functional. So when he wants to smile he moves his tongue!
We are lucky in that our nerves are intact and can regenerate.
Isaiah, has the beta histine helped you?
Amazing pics as a momento! Your scar will fade with time- I was a little disappointed mine don’t show- I wanted people to ask so I could spread the word about ES! You can do that with your pics, lol!
Patience needed then, you must be fed up with hearing that!
So fascinating!! Muscle tendon - very cool. A journey like this is a time it pays to be assertive! As my father-in-law would say - you have to be “mildly annoying” to get what you want sometimes. Especially in a medical odyssey like we all are going through or have gone through.
I think the ligament would make a nice necklace charm with a little cleaning up.
Day 22: awful day today. The nerves are waking up and My whole jawline is so sore. Feel as if I could feel the scalpel cut being made and the styloid being pulled off my skull. Having pain right behind my ear that extends to the back of my skull on that side. Its cold and super humid outside and didn’t realize it would react like this to weather changes. My vision our of the L eye is definitely getting affected (blurry and more hazy) and have some sinus pain. Swelling at the incision site and the mandible. Had been resisting taking the ibuprofen 800 mg, but had to pick it up from the pharmacy.
Going back to work next week and a little worried since I’m a PT and requires my arms to do most of the work and speak pretty much all day. Had my favorite coworker visit yesterday and just from that amount of talking my throat was really sore.
It does sound really early going back to a physical job, I would definitely try to get more time off if you can- if you do too much too soon it’ll definitely set your healing back, as I’m sure you know! You will have days when it feels like you’ve taken a giant leap backwards, it will pass if you can rest up…thinking of you
I totally agree w/ what Jules said. I felt better at a month post op but not truly "normal " until 2 months post op. Try to get an extended leave from work. It won’t serve you to go back & set your healing backwards & maybe miss even more work.
Praying you’ll have wisdom & you’re employer will be lenient & understanding.
On I never thought I would have scar envy! Yours looks amazing - very happy for you. I know it’s the least of your concerns!
I know I don’t feel right to go back to work just yet, but unfortunately have to. Fir the first time in my life, I am going to be a lazy therapist. No lifting, pushing, pulling or anything. Honestly, I have never been so happy to see paperwork heavy patients on my schedule. Sitting at a computer sounds way more pleasing. Have been having horrible headaches , definitely think they’re are cervicogenic. Vision is still getting better. And L side of my face and neck are swollen. I am taking ibuprofen 800 mg, which hopefully works to bring me some relief.
Totally off topic, anyone who had IH have side effects to the diamox (acetozolamide)?