@Isaiah_40_31 Thanks for the HOORAY!! I’m going to call Dr. Hackman’s office on Monday. Thank you for letting me know he uses the TORS procedure! That is definitely worth a trip to NC for surgery.
Have you had Endolymphatic sac decompression for your Meneire’s?
Also, that’s horrible that they don’t allow dry needling in acupunture in CA! I wish I could change the law for you!
Acupuncture is allowed just not dry needling so acupuncturists are acceptable but not chiropractors w/ dry needles! CRAZY!!
I’ve had an endolymphatic shunt installed & am now missing part of my skull on the left side of my head from that procedure. It’s unreal how much that little bit of missing skull changed my hearing (when I could still hear) on that side.
I’m glad the referral to Dr. Hackman is helpful!
@Isaiah_40_31 I’m so sorry it changed your hearing and the missing part of your skull. You’ve been through so much. I wish I could help. Research something for you. You have a beautiful heart and give so much to this forum. One of my friends told me about Monolaurin for my Tinnitus. I haven’t tried it yet but looked it up. It helped with Meniere’s and Vertigo for someone in the Meneire’s forum. Monolaurin Update - Vertigo Free For Almost A Year | Discussion | Meniere's Talk forums Maybe worth a look or try? I’m looking into it too.
So pleased that you have your official diagnosis! Well done researching & advocating for yourself…I hope that you find a surgeon you feel confident in & don’t have too long to wait 
HI all,
Sorry I have been missing in action. Ive been dealing with all my ongoing medical workups as well as dealing with my daughter who has POTS and recently ended up in the ER with C-diff. Its a long unpleasant story.
I did want to chime in though as I have been struggling with vertigo, dizziness, tinnitus, & sudden hearing loss for about 1.5 years and gone thru all sorts of testing from a variety of specialists. I have mild hearing loss, no acoustic reflexes on right side, and some abnormality in the right sigmoid sinus artery behind the ear. My first attempt at vestibular PT put me in bed for a week. I have had all kinds of imaging for ear, brain, TOS, cervical spine and angiograms of vertebral and carotid arteries to try and uncover the source of my ear and vertigo issues ie: compression of arteries or veins. I already have existing neck instability, TMJ and ehlers danlos hypermobility. In 2015 the severe pain started in my right neck and shot to my ear. In 2019, I was diagnosed with Eagles. I have a sneaky suspicion the neck to ear pain may be from tight scalenes and/or I may need a scalenectomy.
Regardless of this, next week I am going to a specialist (otoneurologists & neuro-optometrist) in Chicago for further evaluation of my dizziness and vertigo. They are going to put me thru a battery of testing I haven’t yet had. The doc I am seeing is knowledgable on “cervical vertigo”. I’ll report back on what I glean from this visit.
You are a fountain of resources for us, @Snapple2020. You’re amazing at doing your homework & leaving no stone unturned or option untried as you search for diagnoses & means of symptoms recovery.
I’m so sorry your daughter is having a tough time, too. Very challenging to be dealing w/ more than one person’s health problems. I hope she is better now.
Thank you for sharing the info about the types of doctors you’re seeing. I’m aiming for a vascular ultrasound before I do anything more invasive. My scalenes are also very tight, the left side especially. Hadn’t considered them as a possible contributor to my problems.
I hope you get answers from the docs in Chicago. 
Thanks Isaiah,
I grow weary at at times, but somehow I pick myself up and keep moving forward. My friends tell me I am “tenacious” when I focus my sights on things. Thankfully my daughter is recovering.
When you have underlying medical conditions, in my case, Ehlers Danlos that make it all more complex and symptoms overlapping, it is hard to get to root causes. When you have had a history of neck issues, it was hard to tease out the Eagles syndrome.
My doc here went for vascular ultrasound also first. It was supposed to be dynamic with my head and neck positional to see if I was getting vascular compression. When I did have the vertebral and carotid angiogram…it was supposed to be dynamic too. I found both docs performing them to do minimal effort towards the dynamic portions of the testing. It was done at the end of the testing and in a hurried fashion. I am glad I ended up getting my angiogram at a major center now looking back. Like with any procedure considered higher risk, in the hands of the right experienced doc, the procedure went smooth and was a piece of cake.
I do recall my surgeon saying when he cut my neck open for styloid removal, the neck muscles were very tight. This was nothing new for me because I had struggled with these tight muscles in neck for years. I think I may have shared my TMJ specialist was of the opinion that many people have elongated styloids and calcifications in their neck and are symptomatic. It was his opinion that it was the tight muscles clamping down on them that was causing the pain. I take what he says with a grain of salt but do think he may have a point to consider. I think when one has IJV compression from styloids and calcifications, that is another matter.
I have struggled with tight neck muscles for so long, I can’t remember when it all started. I know it has just worsened over time even with years of massage, acupuncture chiropractic, PT, every modality available known to man. The scalenes have always been a problem. While gathering my old medical records, I found I was complaining of ear pain for over 20 years. I just discovered when I had my first major pain flair of shooting pain to my ear in 2015, that I had some mild hearing loss back then and radiating pain and weakness to arm. I don’t recall this at all. Probably because of the excruciating pain in my ear overwhelmed me. This is where the value of obtaining all your records after the time of service is so helpful in tracking. I did not know I was originally referred for TOS evaluation in 2018. When my neck and ear pain blew up in late 2019, it led to Eagles diagnosis. Now that that Eagles surgery is done and over for 2 years, I’m left with many of the same issues that led me to Eagles diagnosis except adding in the vertigo and dizziness although records show I complain of mild dizziness 20 years ago. I honestly thought is was because of low blood pressure all these years but when it worsened and went into full blown vertigo and sudden hearing loss, it got my attention.
Because of worsening arm and pectoral issues, I have been doing deep dive into TOS studies and medical articles. It too is controversial diagnosis and mixed opinions about how or if to treat it. Its only because I had a second round (increased dose) of botox in my pectoralis areas and scalenes have I put this together. I suspect the doctor hit a nerve when giving me the botox in the base of scalenes. I felt it immediately along the entire pain path of chest down my arm. For 4 days after, when I yawned, that same shooting pain path to my ear kicked up. It started at the injection site of scalenes. Thankfully it subsided. These injections really aggravated everything especially at injection site of scalenes. My neurologist says it’s the dosage (increased) that aggravated it. It was quite painful and I couldn’t wait for it to wear off. This is important for people to know when considering botox injections. Too much botox and at higher dosages can cause pain and hurt more than help. Turning muscles on and off has to be done with care. That injection site is still sore even after 4 months. When I poke my finger there, it immediately goes to ear and causes pain. I have no doubt the scalenes are involved with my ear pain now.
These Chicago docs mention lidocaine causing dizziness as well as dental procedures in their papers. Interestingly it was my failed root canal and emergency tooth extraction that put my right jaw into so much pain and triggered massive vertigo last year that led to ER visit. As you know, the ENT first suspected Meniere’s but further testing ruled it out. Im super curious about this theory. I will definitely share what I learn.
I hope your daughter is on the mend from the infection, & I hope that the new testing shows what’s going on for you…prayers & hugs Snapple 
This life we live can get pretty crazy when our bodies aren’t functioning as they should & even hen they are!!). Thank you for the great update, @Snapple2020. I will be interested to hear what you learn in Chicago & again, hope it provides you w/ long awaited answers & solutions.
Here is my long overdue update following an MRI & MRV w/ & w/o contrast, a CT scan w/ contrast & a dynamic ultrasound - all looking at my vascular tissues in neck & skull.
The good news is that everything looks AMAZING (in spite of two head injuries, a whiplash injury & a neck compression injury (no wonder I ended up w/ ES!!)! Thus, vascular compression isn’t contributing to my hearing loss & there is nothing to fix in that arena to help restore some of my left ear’s hearing. 
I did get a look at what’s left of my styloids, & they are shorter but not totally gone. I expected this based on recent forum discussions about what “skull base removal” is in reality. I’m still having left ear fullness & skull base pain on the left side intermittently plus hearing loss & full time tinnitus.
In some ways, I feel like I’m done pursuing this & should just accept my symptoms because they are annoying but not life threatening. Another part of me has the need to know what’s causing this & if there is PT or some other modality that could help relieve symptoms.
Here are some visuals:
I just checked out the link you posted about Monolaurin in this thread (a little late!). I took Monolaurin in the past for digestive issues & still have some left. I haven’t had a vertigo attack since the beginning of Oct. but the Oct. event was a doozy & the worst one I’ve ever had.
My ENT wanted to give me a Gentamicin injection in my ear which he said would kill the sensory hairs in the inner ear & stop the vertigo forever. It would also destroy what’s left of my hearing in that ear. Needless to say, I declined.
After reading the info on the link you posted, I’m really excited to start the Monolaurin back up. I didn’t have any side effects from it as some people posted. If it works for me, & vertigo stays away, it’s certainly an easy “cure”!!
Yes, the styloids look a bit bigger than expected, maybe a little regrowth? The one on the right in the first image looks quite nobbly, although I remember you saying that one side was tangled in the hypoglossal nerve so couldn’t all be removed?
It’s hard having to accept that we need to live with symptoms & no more can be done, or at least it’s not worth the risk to pursue any more treatment, I hope you can come to terms with this
I should have labeled my images. The image that shows both styloids is w/ me facing front so the one on the right is actually the left & vice versa. My left was the longer one of the two prior to my surgeries. I understood my surgeon to say he was able to shorten that one further, but who knows what he really said since I was told this while awakening from anesthesia, & I could have misinterpreted. I agree it looks knobby. Since I’m not debilitated by pain 
, I’m leaving things alone for the time being. 
