I have suffered from the symptoms of & hearing loss from MD since 2015 after a cycling accident with head injury. A friend & member of this forum recently sent me the link to a research paper that suggests IJV compression can play a role in MD symptoms. Though I didn’t have VES, I have found that stimulating my accessory nerve in my SCM (via exercise or massage/acupuncture) also increases my MD symptoms. I did have shoulder & neck symptoms from ES related to accessory nerve irritation. After some research about the accessory nerve, I’ve learned that it is a close “bed fellow” with the jugular foramen up inside the skull. There is also some communion with the ICA (see TeachMeAnatomy link below).
Because of what I’ve learned about self advocacy from our forum, I’m now beginning to work w/ my ENT at looking beyond just treating my symptoms to possible root causes which can perhaps be dealt with to help reduce my symptoms as they have become more debilitating over the years.
I’d love for any of you to share your thoughts on a possible connection between IJV, ICA, &/or accessory nerve problems as causative for MD symptoms.
Here’s a link to the full research paper though it was originally on a PubMed site:
Isaiah we definitely share some symptoms. Mine started after I had a whiplash and concussion while my head was turned to the right. Almost all of my symptoms are on the left side. There are times it almost feels like the area from my ear down to the top of my left should is just being pulled tight. I can physically move it but that area just won’t relax and I do believe it has a relationship to my TMJ, tinnitus and the fullness in my ear feeling I get. I hope that your ENT helps you find some answers. I’ll take a look at the paper you posted.
I’m sorry for your symptoms, @stuuke. I hope you’re also able to narrow down what’s causing your tinnitus. Hearing loss & vertigo are my bigger complaints though, over time, I’m discovering the triggers for the vertigo so I can avoid them. Thank goodness it’s intermittent & usually only lasts a few hours.
It is not a far stretch to link all of this anatomy together. My first thought is if you have scarring or muscular compensation changes since your styloidectomy that are now progressively compressing your IJV and accessory nerve. A Doppler US and angiogram would show this and give a path for treatment!
I am hopeful for you and your ears
@vdm, The amount of scar tissue the body lays down after injury depends on the individual. Light surface massage starting about a month after surgery & continuing for several months can help reduce the bulk of the scar tissue the body tries to lay down but won’t be able to prevent it altogether.
As I feel my ES surgical areas w/ my fingers, they are very smooth & flat, & there’s no external evidence of scar tissue build up, however, I cannot access the deeper areas the surgery penetrated thus the ultrasound/angiogram are likely the best options to see if scar tissue developed at a deeper level. Because I have no significant surface scar tissue, it never occurred to me before that I could have it higher up in my neck where it could cause problems.
@Isaiah_40_31 Have you had a CT scan for Otosclerosis? It affects hearing and can also cause vertigo. It’s a calcification of the Stapes bone. On an audio gram there might be an absent acoustic reflex. If you have it, there’s a surgery for it . Have any of you ENT’s checked for it?
Also, tightness of the SCM muscle can cause many symptoms as well as hearing loss, vertigo to headaches and nausea. There are 2 heads and each will cause different symptoms.
I agree with @Isaiah_40_31 , everyone is different in how their body heals. It may also be intrinsic (inside the vessel) vs extrinsic which on an angiogram would identify most clearly. There are many causes other than scar tissue. Standard tissue healing time is 3-4 week, up to 6 weeks. This is when the foundational building blocks lay down and it is important not to disrupt that. People with connective tissue disorders have a higher propensity to heal differently.
Last year, I had vertigo for the 1st time & fainted. Now, a year later - I have dizzy spells & have noticed that if I stand up too quickly, I sometimes can’t hear anything and feel pressure. I also have tinnitus but usually it doesn’t last long. The hearing loss is a new symptom for me.
When my symptoms first started, I had a CT w/ contrast which was specifically looking to rule out some type of tumor that causes symptoms which mimic MD symptoms. I had no tumor. I have had surgery to have an endolymphatic shunt placed in my inner ear since MD is thought to be caused by an inner ear fluid imbalance (we’re talking microscopic amts of fluid). It helped substantially for a couple of years then the downward spiral of worsening symptoms started up again. I was told the ED shunt can clog up because it’s so tiny, but I haven’t pursued that idea as I’d really prefer not to go through that surgery again for clean out or replacement. Because I can increase my symptoms w/in a very short time by stroking my fingers from top to bottom on my SCM w/ slight pressure, I’m assuming there’s a connection to my accessory nerve & perhaps IJV(?). My right ear has also decided to join the party w/in the last couple of weeks though hearing has only become distorted, not lost, & it’s intermittent.
Honestly, I’m so thankful to have learned what I have from this forum, even as a mod, because it’s given me a new arsenal to use in trying to help myself in my current situation.
I’m really sorry to hear about your symptoms. Vertigo has never caused me to pass out so I don’t envy you there. I hope you weren’t injured when you fainted.
Have you had ES surgery yet? If not, I would speculate that you have vascular ES which is causing those symptoms when you stand up too quickly. Your symptoms sound like POTS, & some of our members have found those types of symptoms become much less severe or go away after vein or artery decompression during ES surgery.
It does sound like POTS and it just happened last week (the standing up too quickly). When the vertigo happened, my friend caught me before I hit the ground - thank goodness! I do think I need to go get evaluated for POTS & perhaps go see that doctor/surgeon in Dallas. I’m too afraid of surgery after my female surgery this past March. I’m going to take some time off from my full time job to get on top of all of this. It’s over whelming but I have limited support & have a teenager to take care of. No surgery yet…
So sorry that you’re having a difficult time- how lucky that your friend was with you & caught you! I hope that you can get some testing done, & good that you can have a break from work to prioritise your health. Thinking of you & sending you a hug
Update: My ENT doc has determined that the hearing in my left ear is permanently gone, however, he was willing to refer me to a neurologist & an interventional radiologist for further testing. I’m very thankful for that as it will give me the opportunity to explore whether there is a nerve/vascular compression component to my hearing loss/Meniere’s symptoms.
Interestingly, on our forum, I just found the link to another research paper possibly linking Meniere’s to IJV compression in this thread from 2013:
Thank you, @Jules. I’m not sure a hearing aid would be helpful. I can still hear very minimally in that ear (i.e. a human voice sounds like “eep, eep, eep…” , but words are indistinguishable), & the tinnitus is constant. That ear also has hyperacusis so even though I can’t really hear, I still need to put in an earplug when I’m someplace noisy as loud or constant sound/noise (such as in a restaurant) tend to make the tinnitus get louder (almost as if to block the incoming sound). I’m afraid trying to use a hearing aid would be uncomfortable because it puts the sound deeper into the ear & also can amplify the ambient sound in one’s environment.
Another friend suggested today that because I’ve had two traumatic head injuries & whiplash that perhaps my skull bones are “out of alignment” & seeing a cranio sacral specialist for therapy might help realign my skull/facial bones. I’ve considered this in the past but haven’t made the effort to look into whom to see in my area. Maybe it’s time?
I’m sorry I’ve been off the grid for a bit. I’ve been collecting my CT scans, etc and researching publications and surgeons for Eagles. I was finally diagnosed with Eagles. I was like, Duh! I literally hugged the doc and cried. He does the surgery intra orally and will do bilateral at the same time. I have an appointment on Monday to discuss the surgery. I want to be sure that he does it endoscopically. My preference would be to have the TORS procedure with the Da Vincci robot. I’m a medical device recruiter and reached out to some Intuitive Surgical reps to find out who uses the Da Vincci near me. They gave me names and know who’s good. I’ve been busy calling offices and waiting for a call back and gathering information. A lot of “no’s” on the TORS for Eagles. I have an consult with another head and neck surgeon who does the TORS procedure on 12/8. I researched this in the publications and there is minimal recovery time and visibility of all the structures. They can also do bilateral in one surgery. I’m searching and will keep everyone posted.
Recently I reached out to have an addendum made to my CT scans to include the elongated styloid processes and calcified stylohyoid ligament. I also just got CD’s of scans I had in 2020 and 2021. My styloids were elongated then too. They have grown. One of the radiologists explained to me that they don’t note it on the report because there are only a small percentage of people who are symptomatic. My response was – there are more symptomatic people than you know. In all the publications I’ve read, they all note there are probably many more than 4% of people with Eagles. It just goes undiagnosed.
@Isaiah_40_31 A hearing aid would actually help your tinnitus if it is truly hearing loss. Do you know if it is sensorineural or conductive? If conductive there is a reason for the hearing loss that needs to be found. Do you have an acoustic reflex?
As far as the cranio sacral therapy, I say it’s worth a try. If your Atlas is out of alignment your hearing and many other things could be affected. Also, if your occiput is out it could cause headaches, dizziness and vertigo. Have you seen an Atlas Orthogonist? It’s basically a device that just adjusts the Atlas (first cervical vertebrae). The occipital adjustment isn’t easy. In chiropractic school I was able to help someone get off their migraine medication by adjusting Occiput and C2. I say go to the Osteopath.
Also, as for the SCM muscle - this muscle can cause so much havoc. I looked into it for my tinnitus as well. There is something called cold laser that you have applied to the SCM. You can also look into dry needling as well. One question - did your ES surgery help your tinnitus or issue with your SCM? If your right ear is starting to lose hearing as well there’s either something underlying going on or it’s hereditary. Do you have hearing loss in your family?
Does your audiology report state that the hearing loss is sensorineural or conductive?
HIP HIP HOORAY!! I’m so glad you finally have your diagnosis!! Dr. Hackman in NC does the bilateral TORS procedure. We have one member (@adriene61) who had her ES surgery done that way by Dr. Hackman. It was bilateral, & she has enthusiastically written about how virtually painless it was & how quick her recovery was. He isn’t in your state, but he’s also not across the country either.
Thank you for your input regarding my hearing loss. I’ve had tinnitus since I was a child so no, my ES surgery didn’t make any difference with that & I didn’t expect it to. Yes, initially, ES surgery helped calm my accessory nerve which helped w/ shoulder & clavicular pain I had. The SCM issue has been more recent. My right ear seems to be doing better now. My dad did have hearing loss, but I think it was somewhat self-inflicted because he liked to listen to music at a high volume when I was growing up. I think it was his way of shutting out “the world” & escaping into a place of solitude.
I have had laser treatments for various aches & pains over the years, but I’m not sure if they were cold laser since they made the lasered area warm. I’ll have to look up the different types of laser therapy. Chiropractors in California aren’t allowed to do dry needling. Acupuncture is allowed by not dry needling…seems a bit ludicrous to me!
I hope you’re able to find the right doctor to do your ES surgery. I do highly recommend Dr. Hackman if you’re able to travel to NC. I believe you will have a good & healing experience with him. Please keep us in the loop so we can continue to support you.
. Have any of you ENT’s checked for it?
), is it bothering you enough to consider a hearing aid?