First Timer Questions

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Oh happy day!!! I just had the most fabulous and productive Dr.’s appointment I ever had!!
I met with a top Oral and Maxillofacial Dr. who practices in my area but also teaches classes at UCLA. It’s so refreshing to sit down for nearly 2hrs being heard by an extremely knowledgeable Doctor!!! God really lead me to him and placed me in the right hands!!

I couldn’t believe he knew all about Eagle Syndrome and is currently working on bringing awareness to the medical field!! He feels it’s highly misdiagnosed and under-diagnosed! He wants to interview me and bring my story to his students and colleagues! But not only that, in his lectures he wants to include the Eagle Support Group for a resource. So, with the moderator’s permission he would like to do that.

He put all my fears to rest about the calcification mentioned on my last post. He said it’s very common, sees it all the time, and non-life threatening!!! In fact he said neurologist don’t even order CT scans of the spine anymore because they find so much calcifications and typically they never cause a problem and when they do trust me your body sends off the alarm!! :rotating_light:

He did a very complete thorough examination and said the cause of my ear pain, and unbalance/dizziness is from my TMJ joint being pulled on from very tight masseter muscles (We can thank stress & ES for that!!!) which makes my jaw crack & pop, which sends an inflammatory response to ear, which narrows Eustachian Tube, causing pain, popping, fullness, equilibrium problems, bad posture, anxiety, and raises blood pressure. He unraveled and explained all my chronic pain issues perfectly!!!

He gave me some great stretching exercises, breathing techniques, and wants me to download an App called No Clenching.

I’ll return in 2 weeks and see if there is improvement and if not he’s going to fit me for a bite guard that I’ll wear every night to allow the muscles to rest and heal.

So, there you have it folks, I think I’m going to be ok and I have hope again that I’ll make a full recovery!! Praise the Lord!!!

Thanks for all your prayers!!! :kissing_heart: :heart:

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Christy, that’s amazing! So pleased prayers have been answered & that you have hope for a recovery! It’s great that there are doctors out there aware of ES & wanting to spread the word! I’m sure him mentioning the site is not a problem, although we’re obviously not medically trained, it’s a peer support group for those with ES- usually doctors aren’t impressed with what we do! Who was the doctor you saw, can you give his name? Does he do surgery as well?
Really hoping that the bite guard & the exercises helps you, big hugs!

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That is absolutely fantastic, Christy! Thank you for your comprehensive explanation!

How exciting that someone from the medical community is actually interested in our forum rather than critical of it!

Please let us know how the exercises you were given work for you. I’m praying for the best possible outcome.

:heart:

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I saw Dr.Kenneth Moore DDS . He doesn’t do Eagle Syndrome surgery but has knowledge about the condition.

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Okay, thanks- shame he doesn’t, he sounds great!

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Hello everyone,

Wow, it’s been a while since I last posted! So, I want to apologize for that!

It’s sad to say but I’m still on my journey to get relief from my debilitating chronic pain! It’s been about 5mths since I had my second ES surgery. For me the second side was definitely much harder post-op! Dr. Samji said oftentimes that’s the case plus my second styloid was much thicker and longer then the first one.

So, in the last 5mths I’ve been taking it day by day to feel improvements from my remaining symptoms. My first surgery successfully cured my intense daily head pressure, and unbalanced feeling but I still had ear stuffiness, horrible facial pain and TMJ popping on my left side so I was hoping the second surgery would get rid of those symptoms and fortunately it did but I had to do a lot of work to help it heal like physical therapy, myofacial massage, acupuncture, cold laser therapy, daily massages from my husband and heat/cold therapy. After my second surgery I’ve seen a Neurologist, TMJ specialist, orthodontist, ENT, 2 General Dr’s, CT scan of neck and Jaw. The Dr’s are not finding anything abnormal so they don’t know what to do with me?? But, as I mentioned, I’m finally getting relief from my chronic face and TMJ pain so that’s really good and encouraging but one thing that still remains and very persistent is my left ear pain/discomfort! It was the first symptom that I experienced in my healing journey and has been my most problematic one!! I was really hopeful that by removing my elongated styloids it would treat my chronic ear pain condition but it hasn’t because there’s still so much inflammation, popping and I have trouble equalizing pressure in that ear! It got really bad again once the weather changed to cold, wet, cloudy weather! It’s giving me so much discomfort and taking away my quality of life! Out of all my ES symptoms I really wanted this one to go away the most and the fact that it’s still very much here brings me down tremendously!! I don’t know what to do, or who to see about it anymore and I certainly don’t have the money to do anything anyways! My ES medical expenses left me flat broke! I haven’t been able to work for a year due to ES & chronic pain so, ya not much has been paid on my medical bills!! So, I’m getting to know all the debt collectors pretty well with their daily harassment!!!

I’m so fed up with feeling lousy and just want a break!!! I don’t even want to tell my family, friends, or people at church anymore because they’ve heard it all before and assume I’m all better now since I had ES surgery. They’re ready to move on and don’t even ask how I’m doing anymore! I don’t blame them because on the outside I don’t look like I’m in pain but I am!! :disappointed: So, I sit in silence and do my best not to complain and act normal amongst the living!

I’m losing all hope that my left ear will improve and I’ll ever be fully restored! I’m glad that it hasn’t affected my hearing, and I don’t have tinnitus, or dizziness but my poor ear is daily beaten up by the massive pops, and inflammation.,

Also, I’m really glad that ES surgery did successfully treat many symptoms that I experienced previously and my body is overall much stronger.

I’m so sorry I come to you with all this but I feel safe talking here because I know that everyone on this forum can relate due to their own personal pain and struggles!! It really helps talking to my village of pain warriors!!

Tonight I reached my threshold and had enough of this consecutive pain and broke down emotionally while my family was asleep and I was on the verge of having a full blown panic attack but now I feel better just releasing my feelings and it distracted me from focusing on immediate danger!

All is well, I must remain strong and positive and accept that this is all temporary! One day there will be no more pain and suffering and I’ll be with my heavenly Father but for now I must try to work hard on being the very best version of myself and be a great Mom and wife to my very sweet young daughters and loving husband!! Please say a prayer that my left ear will heal and work properly again and that I will find work quickly because I just received my last disability check, and that I’ll be able to get out of medical debt and we’ll be able to provide a good life for our children!! Thanks so much! God bless!! Merry Christmas and Happy New year!! :christmas_tree: I pray 2020 will be a much better year for all of us!!! :crossed_fingers:t2:

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So sorry that you’ve been through so much & are still in pain- I hoped that after your last post that maybe you were getting some answers…please do come on here when you need to, I’m glad that you’ve found that helpful. I know what you mean about people presuming you’re fine after surgery- when I had my 2nd people were like ‘oh, you’ve been through it once, can’t be bothered to see how you are again’!
I know you’ve looked into all sorts of possible causes, just wondered if Superior canal dehiscence has been looked into? One member had that & not ES- I don’t know if it causes pain, but does cause balance issues etc. I think it can be seen on CT or MRI - sorry, can’t remember which!- so maybe they could be re-evaluated, although I appreciate you’ve not got the money for more tests & treatments.
You are so strong, I’m in awe of how you’ve coped with family life with all the pain & surgeries…I have been praying for you & will carry on; it’s good that you have a strong faith. There’s no harm in saying that you’re finding things hard with your Church family though, the more prayer the better!
Hugs to you…

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Hi Christy,

I’m joining the “I’m so sorry club”. The nerves that innervate the ear & can cause pain are both the trigeminal & facial nerves (there are smaller branches off both of those that run into the ear). There is still a possibility that your nerve pain will become less to none over the next 7-12 months. I nerve issues that continued to resolve beyond a year post op.

Has your neurologist offered you any nerve pain meds? Jules made a nice list of those which is in the Newbies Guide. I’ll try to send you a link. Because there are a variety of meds in each of the two drug families used to treat pain, you should be able to find one that both helps & doesn’t have side effects that are troublesome. Nerve pain meds are usually started low dose to help your body get used to them & the dose is gradually increased thus it can take time for them to help until the dosage reaches an effective level in your system. Something like that could make a huge difference for you.

I’m glad you’re faith is carrying you along & that you posted your frustration & concerns. We are ALWAYS here for you.

I will also be praying for healing of that irritated nerve & complete healing.

:heart:

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@Isaiah_40_31 and @Jules,

Thanks for always being a support for me! I always appreciate your wise advice and prayers!! So, my symptoms really don’t match up with Superior canal dehiscence and I don’t have nerve pain in my ear. It’s more like stuffiness similar to when your nose is all stuffed up from a cold but then my left ear pops really hard about every 3 minutes to release that pressure, then starts all over again. It’s so strange because this only happens in my left ear and gets much worse on cloudy high barometer pressure days. I’ve tried decongestants and antihistamines but they make my ear feel patent and that distorts the sound of my voice. I don’t like that at all so, I avoid taking those medications! I went to an allergist and got tested and I only came up with a few environmental allergies so I did immunotherapy shots to build antibodies against the allergy. I got all the way up to maintenance dose and got retested and it worked, I was no longer allergic but it never fixed my ear problem :pensive: I think my eustachian tube is just weak and not getting the proper signals from my brain to open, close, and drain like it should and perhaps that was caused by ES and the TMJD it created on that side. It’s really troubling me that Dr’s aren’t able to help me and the best part of my day is laying down on my bed with a heating bag to my head to reduce the discomfort!! This is no way to live! I’m at a loss because I’ve literally tried everything! I just pray this subsides and perhaps it’s weather related or even just a virus that is attacking the weakest place in my body because in the summer when it’s hot and sunny it’s manageable! Perhaps I just need to move to Arizona! Lol :sunny: :cactus: :sunglasses:
God I’m praying :pray: for solutions !! :innocent:

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Another read I can relate to. Hugs. I hope you found relief.

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My husband has an Arcuate Foramina at his C1 also! He also has eagles syndrome and recently had a bilateral styloidectomy with Dr.Hackman in NC. My husband is still dizzy after having his styloids removed so I am wondering if the Arcuate Foramina is causing him problems. I was wondering if you had surgery on the Arcuate Foramina and if that has helped with your dizziness.

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How recently did your husband have his surgery w/ Dr. Hackman, @pk5? It can take several weeks to several months for post op inflammation to disappear & that alone can continue to contribute to symptoms which exist after surgery. Nerve recovery can take up to year, though by 6 months post op, one usually has a pretty good idea of what symptoms will recover & what may remain.

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First of all, I feel so humbled and honored to converse with you. This forum has been a Godsend and has helped me navigate through uncharted waters. I am not even sure how to begin to thank you all for sharing your stories, knowledge, and support. Luckily I found this forum and have spent endless hours reading and learning from you all. Your support, knowledge, and kindness has meant the world to me. I started advocating for my husband because his symptoms became so debilitating. We were able to see Dr. Hackman and he did a bilateral styloidectomy. He is an amazing surgeon and has a fantastic team. My husband is about 3 months into his recovery, but his headaches and visual disturbances are still present. Dr. Hackman told us that these were anecdotally stated by his patients as being the last symptoms to resolve, so initially I was hopeful, but as time moves along he still has occipital headaches, dizziness, and visual disturbances.

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@pk5,

It is our pleasure to be here to help you & others who are still searching for answers. We have all been down the ES road so know it can be difficult to find the best, most helpful doctors & get resolution for symptoms.

Has your husband had any type of vascular study done to see if he has internal jugular vein compression? The symptoms you’re describing could be indicative of IJV compression which can be caused by things (C1, nerve, muscle, scar tissue, blood vessel) other than the styloids thus having them removed will help resolve nerve pain they may be causing but doesn’t always resolve the symptoms of vascular compression - or vascular outflow obstruction as doctors now refer to it.

A follow-up with an internventional radiologist or knowledgeable vascular surgeon to request a dynamic CTA/V (iodine based contrast is used) could provide some good information. Some doctors prefer an MRV but there is growing controversy about the long-term effects of the contrast used for MRIs which contains gadolinium. Our member @vdm has posted a number of links to research & articles about gadolinium which you can find using the magnifying glass search tool in the upper right.

Dr. Costantino in New York would be the ES doctor closest to you who is very experienced w/ IJV compression. You could even contact him for a consult prior to getting any more scans done. He does telehealth calls so you wouldn’t need to travel to see him for an initial visit.
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS .

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I’m so sorry that your husband is still having some symptoms; have any symptoms improved with the surgery? Has he tried nerve pain medications before surgery? It might help if he perhaps has occipital neuralgia? It’s hard to know what is causing what symptoms when he has C spine issues as well…

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Thank you both for that information! Your insight means so much.

After the bilateral styloidectomy his symptoms are less severe, yet very similar symptoms remain, just not as intense. His remaining symptoms include: 24/7 dizziness that’s disabling, headaches at base of skull, visual disturbances, balance issues (feeling of being on a boat), neck stiffness and pain, tightness in traps, scalp and head sensitivity, fullness in ear, fatigue, and heart palpitations.

We have an appointment with a vascular neurosurgeon at Washington University in St. Louis, Missouri to perform an angiogram where a catheter is inserted into the artery to check for blood flow through the neck and brain to see if the ponticulus posticus (or arcuate foramen) is creating an obstruction in the blood flow.

Attached are images of the complete ponticulus posticus. The space does appear to be rather tight.

3D images of CTA from 5_2023 (2).PDF (3.39 MB)

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I’m glad you’re following up with a vascular surgeon. That makes a lot of sense. I’m sorry to say, I don’t know enough about arcuate foramen to be able to note anything in particular on your husband’s 3D images so I obviously have more to learn. Hopefully someone who is better versed with this like @domino can give an opinion.

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@pk5 don’t know if you’ve seen these, but I found these links extremely helpful:

Your husband’s are definitely ossified. Visual disturbance + chronic vertigo might definitely point to vertebral artery involvement and reduced blood flow to the brainstem. You’re on the right track with vascular surgeon and an angiogram–haven’t had one of those myself yet. The transverse process of C1 seems to be overgrown and protruding quite a bit into the jugular too (maybe it hasn’t quite opened up after styloid removal?) I have similar foramen and C1 TPs and I have all those symptoms as well.

Treatment will undoubtedly be tricky. Surgical decompression of the vertebral arteries seems even rarer than C1 shaving. Stents can work. But one step at a time. I don’t think there are enough cases like ours for docs to definitively know which procedure(s) will make the most difference and what the ideal sequence might be. Anyone one of these issues is considered rare as you know, so doctors can be quite skeptical when we suspect we have multiple gasp. I’m considering Dr. C in NY for styloids and c1 shave for this reason but have no idea if it’s a) possible or advisable with ossified Arcuate foramen b) if he does it.

Deeply empathize with your husband. Disabling levels of vertigo is the worst. The severity of mine fluctuates–I was lying flat on my back virtually all of March. Almost always a little bit dizzy but at least be upright atm. When it’s at it’s worst I suspect concurrent CSF leaks with metallic taste in mouth, hearing changes, loss of appetite, nausea and sharp, sharp pain btwn my shoulder blades.

Things that I’ve found that help:

  • Sleeping on my back with a cervical pillow
  • Ice pack on the neck
  • Anti-inflammatory diet
  • Rotating the head as little as possible
  • Vestibular physiotherapist who knows the neck very well
  • These vestibular exercises: https://www.youtube.com/watch?v=vIwSMOrsD8M – proceed with extreme caution and with a physio to start
  • Self-massaging right behind the SCM like here https://youtu.be/-zEs8DVA6RY?t=698 (but minimizing head rotation)
  • trigger point injections for the muscles (just to get out of worst tightness)
  • Cannabis for muscle relaxation, vaso-dilation and mood
  • weird lil exercises I’ve discovered work for me like:

  1. In a seated position, imagine head being pulled up on a string, as high as possible (lift from core and chest, keep head as light as possible and loose, shoulders relaxed and down) and trace small circles with the nose in both directions, slowly increasing the size of the circle. Sometimes I can feel something like unclick or opens up and feel significantly better. At some positions, it feels like something almost unhooks…like the skull and C1 have become wedged and hold the arteries in a compressed state and with some careful self-adjustment you can ‘unhook’ them.

  2. This has only worked a few times, doesn’t work when my back and neck muscles are really tensed up, but if they can be relaxed over a few days, then lying on my side and shoulder in bed, resting head on pillow and slowly, gently lifting head to the ceiling pivoting from the shoulders…i’ve gotten pops lower down the neck and had the extreme vertigo disappear INSTANTLY.

It took me time and a lot of experimentation to really tune into my neck muscles and find the right movements that provide even temporary relief.

Definitely NO high speed neck manipulations by chiro!

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Any suggestions for one in BC?

This one, when performed properly, should mostly target the sub occipital muscles. I found that having ES used to make me afraid of using those muscles, because the movements would trigger bunch of symptoms including pain. So the muscles atrophied, and it’s been a long and ongoing journey to get them back to life.

This one perhaps targets the whole complex of SCM/scalenes/lev.scapula/upper trapezius, but also the erector, flexor, extensor muscles.

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@pk5 I’m glad that he has seen a bit of improvement with the styloids gone, I agree that the C1 process looks pretty long…good that he’s got a neurovascular appt organised, I hope that testing is helpful :pray:
@domino hope that Dr C can help you too!

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