I had my 1st styloidectomy with shaving the C1 back in 2014. I looked over my discharge instructions I was given at the time. No driving or heavy lifting (more than 10 pounds) for 2 weeks, which was when I had my post-op. I was supposed to only spend one night in the hospital, but unfortunately I had complications. The doctor said it was really tight in there and he had to tug on a bundle of nerves. As a result, I was unable to swallow at all, not even my saliva. That lasted about a week, so I ended up staying in the hospital with a feeding tube (not fun). I was released once I could swallow things like pudding, yogurt, a single noodle from Mac and cheese. I think this complication is extremely rare - and it didnāt last forever, but it did take months before I could eat regular food. I didnāt have a drain, unlike a lot of the people who have this surgery. Also, after the surgery I had first bite syndrome which started out every time I ate and got less and less frequent over the course of a year or so. But getting rid of my 24/7 headache was well worth all the complications.
Susie, this is really helpful information. Thank you!
I have to say WOW too. I am glad that you shared your circumstances and path to Dr. Axon. I am SOOOOO happy to hear someone is is conducting research on related symptoms and conditions. I had my ES surgeries in 2020 and generally have been doing pretty good except for TMJ related issues. I wasnt sure what symptoms were caused by ES and knew I had TMJ and cervical instability due to EDS. I chose to take the approach of doing ES surgery first. Kind of a process of elimination especially when you have a set of complex symptoms and conditions.
I started having the vertigo and dizziness shortly after an emergency tooth extraction and failed root canal in June. It took me down for weeks but I recovered. Out of the blue, 2 weeks ago I started notice some hearing loss and then a couple days later, major vertigo episodes, tinnititus, ear pressure with constant dizziness between the vertigo episodes. I do think there is something going on with my vision. I found that the vertigo flairs that drop me to the floor seem to triggered by by something that happens in my vision. Like movement of objects coming quickly into my peripheral vision. I have confirmed hearing loss now and seeing a 2nd ENT next week. There is some suspicion of Mieneres. CT scans are clear. Moving to MRIās next week.
Im very curious what ālinkedā conditions Dr. Axon is seeing. Please share more. This is the first research I have heard about.
Hang in there Aleabee. Living in chronic pain and suffering not know what is happening can cause anyone to get low. Knowing its not all in your head and then now having surgery to start the process of recovery has got to be a relief. You have alot to look forward to. Hopefully a light at the end of the tunnel? Thanks so much for sharing this info. I will be sharing some of this info with the new ENT I am seeingā¦hopefully he will be curious about some of this.
I would suggest you speak with Dr. Axon about this and discuss the pros and cons of doing all this at once. YOU are wise to question doing this all at once. Due your due diligence and listen to your gut. I found ES surgery (external) to be a piece of cake overall. Adding another procedure might not be so intolerable depending on the recovery profiles given they are only doing one side for es. Hope that helps
Mr Axon has been researching pulsatile tinnitus for quite a while, donāt know if heās looking at anything else linked to ES, but that was the symptom he was most interested in when I saw him 7 years ago, & he followed up with a questionnaire about it after my surgeries.
@ Aleabee I will also be having a right sided styloidectomy and C1 resection with Mr Axon on 8 December. My understanding is that if all goes to plan Iāll have to spend 1 night in hospital and be discharged the next day. However I will not be having the extra procedure you mentioned you might have. Anyway I wish you the best of luck with your surgery and hope it brings significant relief of your symptoms.
Hi, can you tell me what the semi circle canal dehiscence is please, does that involve your ear? I had my left styloid removed by Mr Axon in August which was fine, I slept a lot for the first few days and had soft diet, the pain was bearable.I keep going deaf in my ear and that is driving me mad! Has anyone else had this.Good luck with your op, youāre in excellent hands x
Hi Jan,
I wasnāt sure what the semi-circular canal dehiscence is so I Googled it & found this info:
Temporary hearing loss does occasionally occur after surgery but usually itās within a few days of the operation & resolves w/in a few weeks. It seems pretty late for you to be having that symptom as a result of your ES surgery. I think itās important for you to go back to Mr. Axon or to an ENT more local to you if heās far away, and get that checked out.
I hope your symptoms are just being caused by healing nerves & not something more sinister. Please let us know what you learn if/when you go back for a check-up.
Thank you so much Isaiah
I had this happening before surgery and I was hoping that it would be better but itās actually worse.It is lasting for longer and comes on suddenly.My ENT surgeon that I see here is phoning me on 12th December so I can ask himā¦thank you
I had complete loss of hearing in one ear after surgery, but it came back to normal after a couple of weeks. The other side has slightly reduced hearing since before surgery, which hasnāt changed since I donāt think.
I hope you get some answers soon & it settles back to normal, nerves can take a while to heal properly
Hello Snapple2020,
It sounds like you have a bunch off odd symptoms too. Firstly, I would suggest writing them all down-even the ones which you think cannot possibly be related. What has helped me is to keep a log or journal, write down when the symptoms occur and what (if anything) you were doing immediately before hand.
The reason for this is mainly that the symptoms for me are bonkers and seemingly random, but make more sense when put into a larger picture especially when they can be precipitated by certain actions/events. So, for example, I have pulsatile tinnitus, but I do not have it constantly. Although it can happen randomly and spontaneously even when just sitting on the sofa, there are other events which definitely trigger it like exertion, even just walking up the stairs, and when I become upset. What is interesting is when I turn my head to the left it seems to quieten down. These are really important notes because although PT can occur with eagles syndrome (vascular) it can also happen with semi-circular canal dehiscence; the conditions in which it occurs can sometimes guide clinicians.
Another example is I have what I call an eye-wobble. So, certain things cause my vision to distort and I perceive objects as if they are jumping/moving. Swallowing makes this happen as well as certain loud sounds. So this symptom could be Eagles or it could be semi-circular canal dehiscence or it could be the raised intra-cranial pressure caused by compression of the IJV. Another example is certain loud sounds, (a really loud car/motorbike exhaust or someone shouting) not only makes my eyes wobble, but I perceive the ground to tilt and this has sometimes led me to fall over. Recent CVEMP indicates a threshold of 65 D and so my tolerance for noise is low. It is the weirdest and probably the most upsetting symptom because I worry when I go out in the community and so I avoid doing so unless I have someone with me. This symptom is called Tullioās phenomenon and is definitely associated with semi-circular canal dehiscence. I also have Autophony, amplified internal sounds ( I hear my eyes moving and when I blink it sounds like sandpaper on wood) and this is definitely the SCCD.
Other than that I have chronic disequilibrium, episodes of vertigo with and without vomiting, ear fullness, Tinnitus, headaches, neck pain and hearing loss for high/low frequencies. I also feel tired, like really sleepy sleepy tired, especially after doing any activity.These symptoms could be associated with both Eagles and/or SSCD and or raised intra-cranial pressure.
The first problem is how to make sense of what seems like bizarre and unconnected symptoms and thatās where the journal/symptom log comes in really handy. It organises it a little and helps when explaining to a clinician. The second problem that Mr A has had is figuring out which symptoms are related to which condition and then deciding what to do about it. In all likelihood there is significant cross-over between the conditions and symptoms and surgery to āfixā one condition will only be part of the solution.
So in answer to your question about ālinkedā conditions, I can only repeat what Mr A has told me over the years since 2018. Firstly, Eagles may not be as rare as the data indicates. There is likely to be many more sufferers, but they have not either got symptoms or they have not ( and may never) get a diagnosis. Secondly Mr A works very closely with Mr Higgins and they collaborate on research, primarily related to pulsatile tinnitus as Jules has said, but Mr A has noticed that a number of patients he sees have a set of symptoms which are confusing. Further clinical investigations have revealed raised intra-cranial pressure, Eagles and SSCD.
SSCD itāself is a pretty unknown/under researched pathology, in fact, in 2015 when an MRI scan showed a dehiscence in both my right and left ears the clinician at the time dismissed it as a diagnosis because he said it was so rare; it was deemed an unlikely diagnosis and I have a medical letter which states this. It was only when I got to Addenbrookes and had further tests that it was confirmed and my symptom journal helped with this. Again, it is probably not as rare as research suggests and it is more likely that people are undiagnosed.
In December 2020 Mr A said he was publishing a paper in early 2021 which explored the potential association of the three conditions, but I have been unable to locate the article. The hypothesis that Mr A and others are exploring is that an elongated styloid is contributing to raised intracranial pressure. This raised pressure somehow āerodesā the bone over the canal leading to a dehiscence (a hole), and this dehiscence is associated with a range of auditory and vestibular symptoms. It is only a working theory, hence the much needed research and there are many articles that dispute this explanation preferring to explain the dehiscence either as a problem in utero or as a result of trauma to the head.
Unpicking complex symptoms for a definitive diagnosis ( and a subsequent treatment plan) is a challenge, as is living and coping with a complex set of symptoms. I have grown tired of explaining it to friends and family, because it is just so confusing for anyone to understand. So now I just say I have a condition that is similar to Meniereās ( It isnāt really, but people tend to understand the vestibular symptoms more easily). Anyway- Thatās all I can think of for now and I attach one research paper I found on SCCD and intra cranial pressure, but it doesnāt mention Eagles. Good luck with your ENT I have fingers crossed for you
A
http://dergi.kbb-bbc.org.tr/uploads/pdf/534328100438742.pdf
Hello M_UK, I have decided that I will not have combined surgery for SSCD and eagles at the same time. I spoke to a clinician and I feel its just too much at once. Interestingly, my surgery date of 17th has been put back because of a bed shortage and is now on the 8th. Iām first on the list, so I may well see you on the ward! Although, I have been warned the surgery may get postponed again.
Good luck on the day
A
Dear Jules and @Isaiah_40_31 , I have chosen not to have combined surgery after talking to a clinician. I just felt it was too much at once. Also- surgery date postponed until the 8th of Dec with a possible further postponement due to shortage of beds. T
ake care A
@Aleabee Iām sorry to hear your surgery has been delayed. I hope for both our sakes it isnāt delayed from the 8 Dec. I have a pre-op appt on 16 Nov so Iāll try to get more info then.
HI Aleabee,
I thought I was done with the odd symptoms after navigating the Eagles Syndrome gauntlet 
Thanks for the suggestions to journal my symptoms. I did do a lengthy history and have made mental notes of triggers the past couple weeks. I definately have the same pulsatile tinnitus and mine happens spontaneously also. I have noticed it more recently when I go into a large noisy store. I noticed its better when I am in a quiet place. Alot of my vertigo spells seemed to be triggered by neck position and visual motion in my vision at the same time my body is in motion. Crossing a bridge in my car, getting off a ferry in my car when bright rear end lights in front of me, looking up at ceiling in front of my computer. Most recent one occurred while I as driving as a passenger in a bus while it was turning a corner. I had taken the RX that morning for vertigo which has proven useless.
āOther than that I have chronic disequilibrium, episodes of vertigo with and without vomiting, ear fullness, Tinnitus, headaches, neck pain and hearing loss for high/low frequenciesā This pretty much describe me too. although I have this tightness in my throat like someone has their hands around my neck. I am assuming this is swelling. I dont have the SCCD although I do sometimes have feedback of my own voice and in conversations with others one on one. I only have one sided hearing loss. Interestingly I did have a mild concussion about a year ago.
ENT I saw Monday says I do have alot of cross over symptoms and he tested me for the eye wobble thing. He wants to let my symptoms settle down before doing further testing that might aggravate my symptoms. Wonders about Vestibular Migraine and/or Meniereās. He gave me RX for prednisone. Thought vestibular PT might be helpful with well chosen experienced PT. Also recommended supplements such as magnesium, etc. Just so happens my neurologist has a supplement called ribomag for migraines. He knew I was seeing my neurologist yesterday. Neurologist did not think it was vestibular migraines although he agreed some cross over symptoms. He mentioned another ear condition but I didnt write it down and called back for the name. I did get botox injections all around my ear, temples and neck. I can feel the steroids kicking in and getting injections at least released some muscle tension.
I do feel like I am in good hands with my two docs. One of the specialties this ENT handles is Meniereās. I hope eventually we will get a diagnosis of sorts.
Even though I have had Eagles surgery, the surgeon does not focus on IJV nor was there imaging that identified it. Only a CT scan. I have a propensity to develop scar tissue and have had numerous nerve compression surgeries because of my Ehlers Danlos connective tissue disorder. I still wonder about compression as sometimes I do feel something is getting squeezed causing pressure in my head.
I did just check the CT scan just done last week that indicates āThe cochlea and vestibular apparatus demonstrates normal morphology. No evidence of semicircular canal dehiscence.ā Thanks agin for all the info
Aleabee,
Wise choice not to take on too much at once. Better to be safe than sorry. Hope you get in there sooner than later for the Eagles surgery. 
A shame your surgery has been postponed- I really hope that you have it done on the 8th Decā¦sounds reasonable to be concerned about getting so much done at once- will you have just a styloidectomy now?
If you do find Mr Axonās research article it would be good to have a read!
Your docs sound thorough, so sorry youāre having all these symptoms, hope they can get you some answers & treatment!
Hi Snapple!
What a disappointment for you to be starting a whole new round of symptoms with unknown origin. Has anyone suggested getting a CT of your neck w/ contrast or is that a possibility once things settle & your ENT begins searching for a diagnosis?
I hope the prednisone helps your symptoms calm soon so you can get on with the next steps toward discovery of cause. This is sure the wrong time of year for this sort of thing to be nagging at you!
Iāll be praying for an accurate diagnosis & soon!!
Aleabee,
It sounds like youāve found a āgoldenā doctor in Mr. Axon (but we already know he is the best in England for ES!). Itās great to know a bit more about his research & with whom heās doing it.
Iām glad youāve made a decision as to how YOU would like to proceed & have not been persuaded to take on more than you feel is safe or doable. There will be slots for the other surgeries once youāre healed from ES, even if you have to wait a bit.
I will be praying your surgery is not delayed beyond 12/8.