Ear issues began about 45 days after surgery and I have not tried to fly. I visited my local ENT, who used a little vacuum to pull dead skin off my eardrums, which helped. The eye discharge started a bit later, maybe 3 months, after my eyelid started closing again. I visited the local ophthalmologist for prescription eye drops, which have helped a bunch.
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Got ya, thanks for the info! Please keep me posted & I will do the same! I am hopeful that itās only nerve irritation or inflammation causing the issueā¦ I guess only time will tell. Once the pain dies down, Iāll probably have to see my local ENT as well. The tinnitus and Eustachian Tube issues together is quite irritating. I guess this is my chance in life to finally develop some patience 
For today, Iām trying to just focus on getting a decent nightās sleep last night and feeling some of my anxiety fall away. Iām seeing a 15-20% improvement in anxiety since the surgery, which Iām thinking is due to the relief of the IJV.
Itās really great to have other patients to stay in touch with while healing!
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Dr. Hackman said it is vagus nerve irritation causing Eustachian tube disfunction. One of mine actually got infected and the pain was intense. Then when the infection cleared, it crackled from the dead skin on the ear drum, which drove me crazy for a week. The ear that got infected has completely resolve and stayed clear. The other is now clearing slowly. I have been using an over-the-counter ear drop (Hylands), which has helped. Hot compresses help. I work on clearing my ears intentionally several times a day to keep them working.
The cause is deeper than the incisions around the parotid glands. The swelling from styloid removal deeper in the neck is irritating the nerves that innervate the Eustachian tubes and lacrymal drains. When your incisions are fully healed and soft, your ears will look different, so give it some time. I am 8 months out from surgery and my incisions are still improving. I occasionally have swelling at the jaw line still, and it took all of 6 months before I could sleep on my side because the sides of my face were tender.
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This is great to hear, thanks for the extra detail! Quite the relief. Itās wild how many things get affected in such a short time by such a rare thing.
Appreciate you!
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Your incisions look like theyāre healing well, hopefully all @Catmdās help will reassure you- nothing like hearing it (pardon the pun!) from someone whoās been through exactly the same surgery!
Patience, patience!
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Yeah, Iām extremely pleased with how the right side turned out aesthetically. The incisions themselves all look like theyāre closing up nicely, I just hope the left heals over time in a way that is less noticeable.
Overall, day 12 post op is more tolerable overall. My voice, which has been quite hoarse, is starting to come back, itās a tiny bit easier to eat food everyday - was able to eat chips & guac last night and that was a real morale boost! The eye tingling (knock on wood is seeming to get better), and it sounds like in most cases the eyelid issues completely or mostly resolve, so hopefully thatās the case! I woke up with a little less less eye discharge today, and less burning today, which is a step! I know the numbness and tingling is a waiting game, so at this point just trying to focus on the food, and hope the rest keeps improving in time. If some of my IJV ES symptoms subside (tinnitus, visual snow & disturbances, etc.) start to go away, Iāll be ecstatic!
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Good to hear youāre recovering. Sometimes a balloon or stent procedure is required to reopen the vessel if youāve been dealing with this for a while so donāt despair if you donāt see instant resolution.
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Dobbs glad to hear about your recovery. I had a bilateral styloidectomy on August 2021 with Dr. Hackman. My incisions were in my neck. Recovery was difficult but time has made all the difference. I am 6 months post-op. Most of my symptoms are gone. I still have a little First Bite and occasional swelling.
Please be patient. It should get better with time. Best wishes for your successful recovery.
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Eagle,
Yes I have had an upper cervical spine MRI, as well as a Digital Motion X-ray, several still positional X-rays, and multiple physical exams to confirm the diagnosis of CCI.
Hi all! Just wanted to post a follow-up, as itās been a while since I have updated. I am now almost 8 weeks out from my bilateral styloidectomy, and things ARE getting better with regard to recovery from the procedure itself.
My eyelids are now working properly again (yay), the swelling is going way down, and 3 of my 4 incisions are looking great. I still have what Iāll refer to as āknotsā under the scars on the neck incisions, but starting to do some light massage on those now that the pain is going down. The 4th incision will likely need some revision because it didnāt match up quite right, but thatās the least of my worries at this point.
The jury is still out on SCM damage, but some of the facial asymmetry seems to be working its way out - I spoke with Dr. Hackman about this and he said itās likely due to swelling vs. damage to the motor nerves, which is reassuring. I do still have numbness in both ear canals, and numbness in my cheeks, neck, and near my left temple (the removal on my left was pretty intense & required a lot of dissection, so weāre expecting a slow recovery). My left earlobe sensation has returned, and Iām starting to get āzapsā and tingling in my ear canals, and some areas of my face (which sounds like healing & a positive for my long-term recovery prognosis).
My overall anxiety level has decreased (no history of anxiety before ES), likely from the IJV compression release (Dr. Hackman said I had a tremendous amount of carotid sheath, cranial nerve, and jugular vein compression), and Iām not nearly as restless. My sleep is gradually improving. I do still HAVE to sleep on my back and at a 45 degree angle or I feel a pulsating sensation in my neck, which Iām thinking is due to post-op swelling (which sounds like it can take MONTHS to go away).
I am still experiencing a LOT of symptoms: visual snow, halos around lights, after-images, tinnitus, dizziness, heart-rate variability (POTS), etc. However, my case is unique in that I also have a firm diagnosis of Craniocervical Instability (really did it with the double-whammy, something of an unfortunate medical unicorn).
Overall, my recovery is SLOW and is requiring wayyyy more patience than I typically have for medical issues. For anyone else that has CCI along with their Eagles, I was diagnosed at Caring Medical in FL, and am also getting a second opinion regarding regenerative treatment options at Regenexx in Colorado to see which one I am more comfortable with (for regenerative therapy).
Best of luck to everyone else dealing with this! There is hope to get to the other side!
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Congrats Dobbsā¦its usually uphill from here.
I had some of that eye twitching myself and neurologist said it was trigeminal nerves. You will still make a few steps forward and then back. I found by week 12, most of the major symptoms were no longer a problem. Over 1.5 years out of ES surgery and I still have some numbness. It seems to be improved by massage.
I have a long history off CCI and went thru a variety of injections including prolo therapies over a period of 10 years in the 1980-1990ās. I have considered PRP therapy more recently and data was not strong enough to support spending so much out of pocket. The data is weak as far as improvements using PRP and/or stem cell injections. There is a reason why insurance doesnāt cover these therapies and I encourage you to look at the studies before letting doctors who use these methods extract big $$$ out of your pocket book. There are no huge studies with big patient populations that I can see.
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So pleased that you have seen some improvements with surgery, and that nerves are healing, albeit slowly! As you say, itās complicated with CCIā¦8 weeks though is still early days! What about the GI issues?
I hope that other symptoms do improve with time still, & the scars, definitely a lesson in patience!
Congrats on the improvements seen so far, I think there is still inner swelling but the 3 month mark will definitely be a good time to assess as most of the swelling is expected to subside.
Just a question, are the visual snow symptoms shown below worse when you wake up in the morning versus when you are awake during the day? I know they are present all the time, I am just asking the severity of it. Mine are worse when I wake up early in the morning or even after a nap which makes me think that Jugular Veins, which are supposed to drain the brain when lying flat, are impaired hence the increase of symptoms since collaterals help them when upright during the day (just my observation). So in your case, I presume that swelling of the internal muscles might still be compressing the Jugular Vein hence the remaining visual snow stuff or it could be related CCI thingā¦time will tell
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Iām definitely interested to see where I land after 12 weeks, that seems to be the best indicator of the first stage of recovery, though it sounds like some sensation can take upwards of 1-2 years to come back! Hopefully I heal quickly LOL
With regard to the regenerative procedures, Regenexx in CO seems to have the most data and best procedures with multiple layers of image guidance, including ultrasound AND fluoroscopy (it sounds like any prolotherapy done without these extra measures is a guess at best on placement of the needle and whether or not the ligaments are actually impacted for healing). I have been pouring over research, reviews, and consulting a network of physicians regarding these procedures, and Centeno/Schultz seems to be the best and most-respected. I have my first consultation in a few weeks; hopefully it continues to sound viable. Thank you for your perspective on your experience!
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@KoolDude My visual snow tends to be the worst when I wake up, when itās very sunny outside (ie: if I look at the blue sky on a sunny day), and in the dark (I see little flecks of light all over in the dark), and then the other halos around lights, photophobia, etc.
I am repeating my CTV after 90 days per Dr. Hackman to see if the blood flow is looking normal, or if there is still compression. I am also having IJV ultrasound (measures width & circumference) performed next week, so Iāll share those results when I have them!
Ironically, my issues get worse when I lay completely flat, which imo makes it seem more likely that itās caused by the instability, but I agree, only time will tell.
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@Jules my GI issues have improved a bit, though still having some. From my understanding, the vagus nerve tends to cause these issues when related to ES or CCI, but at this point, I will take any improvement! I will say that post-op, my diet has been another source of the improvement (typically VERY good, but aiming for perfect to promote healing), nearly all non-starchy vegetables, low glycemic fruits, and organic/grass-fed meets, etc.
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@Dobbs one mechanism that these visual symptoms manifest is an enlargement of optic nerve sheath by excess CSF fluid - this excess CSF fluid puts pressure on the optic nerve, creating all kinds of symptoms. It can be caused by impaired drainage of the brain due to compression/narrowing of brain sinuses such as Transverse/Sigmoid Sinuses or Internal Jugular Vein compression/narrowing. Hoping no new compression but muscles can also compress the weak walls of the Jugular vein particularly when swollen temporarily and might need ballooning at time to open it up. Watching your case closely to see if the visual symptoms disappear after the swelling goes since I am hoping the same after surgery.
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@KoolDude iām definitely interested to see how the IJVās look on ultrasound next week - not as good as CTV but still a useful bit of data. Hopefully I donāt have to have the balloon or stent done, but in either case, Iām very interested to see how I do. Iāve also been told that my lack of lordosis and my hyper-mobile c-1 can cause some compression issues (slips over 10mm). Would love for the removal of the calcified SH ligaments and my larger styloids to do the trick!
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The Colorado company put in a call to me as I was seeking more detailed information re: studies that support the PICL. The person on the phone kept saying, letās just schedule a consult and your questions can be answered then. I wasnāt thrilled to be pushed to pay for an appt to just get the answers to my questions about their procedures/products. It was a red flag for me to have that kind of marketing/sales push. I was then sent an email link with a very general explanation. Sorry it was a joke and not even close to what I wanted. It was a sales paragraph targeting CCI patients. I personally couldnāt find much in studies on their website that involved many patients. That is what I look for. I also look for studies outside what that company whom markets/patents their product to get an unbiased result and study document. I hope that helps.
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Good that your GI issues have improved a bit tooā¦hope things look better on the ultrasound next weekā¦
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