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Eagle Syndrome - Online Support Group

Undiagnosed, CT results, my symptoms, ES? and questions

So good to read your update, BG! It sounds like you learned some great lessons which you’re able to apply now from the first time around. So glad you’re seeing signs of improvement even if small. You know the drill…time & patience…listening to your body…ice, elevation, & rest… :wink:

Here’s wishing you a happy & much healthier & pain-free year in 2020!

:hugs:

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dje1976,

It sounds like your trigeminal nerve is still unhappy & thus the headaches & at least part of the facial pain. I hope that nerve gets to healing quickly so you can have resolution of the headaches in particular.

I also got facial pain post op in the same area as you that I did not have before surgery. Though the pain was significant right after surgery, it has improved significantly. It is still with me to some extent, & that & FBS are my friendly reminders of how far I’ve come overall since I had my ES surgery. Neither one affects my ability to function, they’re just annoying. I’m 5 years post op at this point so am guessing my nerves are done w/ their recovery.

I am also hoping that by 2 mos post op you’ll feel remarkable compared to today & that 2020 will be a year of good health & no pain for you as well.

:blush:

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It is still very early days in terms of recovery, so if you can try to be reassured by that; some members have come back on a year after surgery to say that they have still seen improvements!
I’ll keep praying that things improve for you, & quicker! :pray:

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Hello, quick update after about 1 month post op, in case someone later might be interested in my experience:

Over the last two weeks:
FBS symptoms are mostly gone.
Side of my face is still tender (jaw, masseter, ear)
Sour taste is slowly getting better.
Nausea is better
Tinnitus has not changed.

Dull headaches at temple are still a problem. Overall headaches are a little bit better compared to pre-op but I am also less active than I was pre-op.

My surgeon said to give it another month, by then I should have a good idea of what was helped by surgery.

I probably still have some TMJ disorder issues, along with recovering from surgery.

I’ve heard others saw they have headaches near the temple. How does ES cause temple pain? From compression of the jugular, nerve damage, or both?

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Temple pain comes from the trigeminal or facial nerves which run through that area from the front of the ear. Your trigeminal & facial nerves were likely either irritated before surgery &/or a bit during surgery. In some cases, one or both never fully heal & in others it just takes time. By two months post op you’ll have a much better idea about what symptoms are going to be slow to go away. It can take up to a year for those irritated nerves to recover. Often the process is so subtle you don’t realize they’re getting better until one day the pain is gone.

Jules takes amitriptyline for trigeminal nerve pain which stuck with her. That has been a good solution for her.

Google “trigeminal & facial nerve images” to see where those nerves are in your face. If you go to YouTube & search Two Minute Neuroscience Trigeminal Nerve or Facial Nerve, you’ll get a quicky lesson about location & affects which will be helpful for you.

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Thanks again Isaiah!

Do you know if nerve pain can be dull? I’ve been told nerve pain is mainly sharp, or like an electric shock, or pins and needles.

I have tried a few things like Neurontin (which did not really help so I stopped). I had a nerve block injection to the site which provided only some temporary relief. I’ve tried an SPG block (basically lidocaine up the nose :slight_smile:) and that also did not really help.

Massage helps temporarily, and I think for things like trigeminal neuralgia touch normally makes it worse.

Based on all of this my Dr(s) did not think it was nerve related.

2 years ago I took nordtriptyline (I think this is very similar to amitriptyline). It did seem to help a bit, back then my symptoms were a little different though. But I ended up having a reaction to nordtriptyline (high pulse, high blood pressure, hot flashes) so I stopped taking this. I haven’t tried amitriptyline but from this I am reluctant to try.

Hi dje1976,

Nerve pain can be dull - here is my long answer to your question. I have terrible TMJ in my right jaw joint, & in spite of a lower splint for my teeth & upper retainer which I wear at night, my teeth still occasionally get out of alignment which throws my jaw joint off. When this happens, I’ll have somewhat severe TGN symptoms (only on the right) which translate to pain above & behind my right eye, pain in the right side of my nose, achy bottom teeth & occasionally a migraine-like headache. My pain is always dull, achy, constant when I have it. I have intermittent pain from spinal nerve irritation which comes as electric shock, tingling, numbing, etc. My TGN pain is somewhat atypical as it doesn’t follow the “standard” for nerve pain which is the symptoms you suggested & which I experience from the nerves in my back.

Massage can help w/ nerve pain if it’s done correctly - i.e. sometimes nerves are irritated by inflamed/tense muslces. If those muscles can be worked over to help them relax then the tension on the nerves ceases & nerve pain subsides. When that is not the case, I do think directly massaging the nerve can irritate it further.

I’m sorry neurontin didn’t help you. We do have a member here who used it for 3-4 months post ES surgery before it started relieving her nerve pain. Sometimes it’s also a matter of tweaking the dosage i.e. doctors tend to start w/ a very low dose. When that doesn’t work, it can gradually be increased (as long as the patient is w/o side effects) to the point where it is helping. Did you go through any sort of progression like that? If so, & it still didn’t help, you could ask your doctor about amitriptyline even w/ the reaction you had to its cousin. Sometimes the slight variation in chemical content from one medicinal relative to the next can make a big difference in efficacy & lack of side effects (of course, the opposite can be true as well). Of course, you should mention your reaction to amitriptyline as well.

Type 1 is the electric shock type pain, Type 2 or Atypical pain is more aching, boring pain. I still have some of the Type 2 pain after surgery, although it is related to neck problems too- as Isaiah says tense muscles can trap nerves & can cause nerve pain. Not sure how long you took the Neurontin for, with all the medications they can take a little while to work. There are other medications you could try like Gabapentin, Carbamazapine etc, so might be worth looking into something else? Ben’s Friends have a Facial pain group which might be worth looking at for more info?

I have TMJ/TGN problems just like Isaiah and recent ES diagnosis as well as Ehlers Danlos (EDS) which can cause neck instability. The trifecta for pain. EDS patients metabolize novacaines and those type of blocks rapidly and are short lived. Ive had all these types nerve pain and tried most of those meds including various types of massage and dry needling/acupuncture. The 1st doc who did the blocks was only partially successful and I then went to someone more experienced or willing to go deeper. Finding a skilled nerve block doctor is important. Hated neurontin and side effects of most others which were not worth it for so little relief. I did try the nortriplyne (Pamelor) prescribed at a pain center which was helpful but causes weight gain so I just took it short term to break the pain cycle. It did not work for my daughter though. It seems its all trial and error as everyones body different. Ive have tried all types of injections which sometimes has helped. It is so hard to keep all the pain controlled. When I have the severe shooting nerve pain and spasms, not even oxycodone can touch it. I have been prescribed dexamethazone packs (steriods) that help reduce the inflammation with some success. I have found that finding a good osteopathic doctor who specializes in crainial sacral work combined with light massage on a regular basis can help with the muscle tension. A co-worker recently mentioned a friend who had radio-frequency eblation of the offending nerve(s) in her neck. It essential fries the nerve connection so you dont feel it anymore. Kinda like a root canal on a bad tooth which I have had many. I asked for the docs name who does it. Ill be keeping my eye on that procedure.

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Nerve ablation like other treatments/therapies for nerve pain seems to be successful for some people & not others. Nerves do recover over time so even frying them, doesn’t guarantee a pain free situation forever. :weary:

what is that type of scan done and where did you get it done? Did the doctor ask for it? My doctor just goes by the reg ct scan without contrast

Hi Anthony,

I had a neck CT with contrast, the doctor specifically ordered with contrast. I’ve been going to a headache clinic for about 9 months and the doctor there ordered this test to rule out ES (The contrast showed bilateral jugular compression). After he saw the results he still didn’t think my symptoms were related to ES so I went looking for other opinions (more in my comments above). I know some doctors prefer with contrast, some do not. I had to setup the scan at a local hospital. I am now 2 months out and I’ll give another update soon, but my headaches are better but can still get bad sometimes.

Feel free to ask any other questions.

Hello,

So here is a 2 month update. I’ve noticed some improvement to my headaches but still have them. Flare ups are less severe and less in frequency. I’ve been able to be a bit more active, I’m trying to do more walking and stretching.

So my theory is my ES and TMJ disorder were both working against me. So just treating my TMJ was not very effective. My neck seems less tight so I think having the surgery has allowed my neck muscles to loosen and that has somewhat helped loosen my jaw muscles. I have been working on my TMJ type of therapy by stretching my jaw and doing some strengthening exercises (slowly) and I hope this will help me going forward.

I had my 2nd follow up appointment with my surgeon. He said if I want I could start scheduling the surgery for the other side. I am not ready for that because my other side does not really have symptoms so I’m not sure how much this would help. He said it is very common for ES and TMJD to both be present, I see a lot on this forum also. I still don’t quite understand why this would be, but I guess they are both in the same general area with lots of nerves, muscles, soft tissue, and bones. Anyone able to explain this more?

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What made him think that your symptoms werent es related? Whats the size of your styloids and the shape?

I had one doctor tell me that mine are 4cm and 3cm. And anther doctor just said that they are not big enough for eagle syndrome.

3 & 4cm are definitely long enough to cause ES- the ‘average’ that doctors use is between 1.5cms- 2.5cms, but unfortunately some doctors don’t take notice of this! Plus the measurements aren’t always accurate, we often see members mentioning that when the styloids are removed they’re longer than measured on a scan.

Glad that you have seen some improvement after surgery. If the headaches are to do with the jugular vein compression, then you might find if the other styloid is removed it could improve things even if you’re not getting pain that side of the neck…but you’ve been through surgery once so you know what to expect if you have the 2nd side done. I had less pain with my 2nd side, but still had jugular compression, I decided to have that done in the end partly to make sure I’d done all I could to get rid of vascular symptoms completely. Plus also because I’d found a good surgeon & wanted to have him to the 2nd surgery in case he stopped doing ES surgeries etc!
It is a tricky decision though, & there are risks with any surgery.

The Dr. That ordered the CT is a neurologist. Basically he said that I didn’t have pain in my throat, or a feeling like something was stuck in my throat, or pain turning my head. Those are the classic symptoms. But on this forum you can see the symptoms can vary. My styloids were 3.8 and 3.9cm from the scan. I’m not sure the shape, I have pics above. My surgeon said that about 90 percent of his patients get at least some relief, and about 70 percent get substantial or complete relief. I would say I got some but not substantial.

dje1976,

I will reiterate what Jules said, the remaining styloid can be contributing to the remaining symptoms you have EVEN IF those symptoms feel like leftovers from the first styloid. It is common in bilateral cases for the remaining styloid to cause crossover symptoms i.e. little to no symptoms on the side of the remaining elongated styloid but some to significant symptoms on the side that has already be operated on. Search for posts by our member Mark. He strongly testifies to this fact as he just had his second styloid removed because of crossover symptoms & now his symptoms are gone. I also had that experience though I also had significant symptoms on the side w/ the remaining styloid so, for me, a second surgery was a no-brainer.

Please don’t think I’m trying to push you into a second surgery. I just don’t want you to disregard the possibility as it just might cure the symptoms that remain.

@dje1976

I am now 9 weeks out of my second external surgery. After my recovery from the first surgery, which took about 2.5 months, I thought it was all behind me and I felt great. I little pain and few symptoms on the remaining side.

That changed when I began to have flare ups and I felt most of the pain on the surgery side, also known as referred pain. I couldn’t understand why I was feeling pain on the side I already had surgery!! I was sure that I made a mistake by having the surgery.

The flare ups kept coming and pain kept getting worse, so I met with the surgeon and scheduled the surgery. The second surgery was 6 months after the first. The first thing I noticed when I woke from surgery is that all of the referred pain was gone!

Of course opting for and recovering from surgery is no cake walk, but now 9 weeks out form the second surgery I am so happy they are both out. No more referred pain and I am healing well from the second surgery. Oh, and the first bite syndrome is mostly gone! :smile:

Peace
BG

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