agb,
If your ENT doesn’t agree, then pursue a CT order from your PCP. It will be the only way to get a diagnosis one way or the other. Truly, leaving no stone unturned until you have an answer is worthwhile.
Sounds “right on target” to me, JustBreathe. Thank you, as always, for your insight.
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Everything you said makes sense and I can feel that I am off balance in my physical being (not vertigo imbalance). I had hoped to skirt by and not have the surgery for the second, but I am only kidding myself. Having gotten through the severe post op complications from the first surgery, I can see that mostly all issues were temporary and hence, now less frightening. I have an appointment with a local surgeon at a top hospital in NYC on 11/13. I am armed with information and experience so I am confident that I will know if he would be the right surgeon to do the second operation. I can always go back to Philly, but I would prefer to stay local.
Peace to all,
BG
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I forgot to add this tidbit on imbalance and referred pain:
There is a new internist in the general practice office I go to. She’s fantastic and helped me through the post-op issues I had. I saw her last week to make sure that my symptoms from the latest flareup didn’t warrant some other intervention or scan. She said that the pain and issues that I am having on the surgical side is most likely referred pain from the remaining styloid on the right.
I know that we talk about referred pain and being out of balance (with one styloid) on this incredibly supportive site, but to hear it from a doctor is very validating and supports the need to have the surgery for the remaining styloid.
Thanks to all for the continued support.
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Good to hear from a doctor, I agree!
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Is there an order in which these symptoms appear?
2018- eye dryness and pain with facial crawling and pain, and swallow difficulty
2019-These all came in a matter of 2 months (the first 10 days i couldnt walk from the dizziness)- ear pain/fullness, eye pain, throat pain, jaw pain, tinnitus, fatigue, facial pain/crawling. Tingling in hands and feet (this the doctor said it could be something else, but it all came at the same time)
2020- doctor talked to me about eagles and told me he could perform surgery
anyone else have tingling in hands and feet?
A specialized ENT said i have 4 cm one side and 3cm on other. He said he could perform the surgery and hes perfomed it before. He said i have the area calcificated.
Hi Anthonyp8484,
As far as ES symptoms go, new ones can appear as the styloid continues to grow &/or the stylohyoid ligament continues to calcify. It depends on which of the 6 cranial nerves in your neck the styloids/ligaments are irritating & whether or not you have vascular compression. Symptoms can come & go. Head position & posture can cause symptoms to change i.e. you may find your symptoms are worse when your head is in certain positions but relieved when it’s in others .
As far as arm & leg tingling goes, we have had some forum members w/ those symptoms. Usually arm & leg numbness/tingling comes from irritation of spinal nerves (cervical & lumbar). Is there any possibility you’ve changed your posture since your ES symptoms started? For example, do you keep your head slightly rotated or is your posture more slumped because those positions are more comfortable for you than standing straight & tall? Postural changes could bring on the arm & leg sensations because the neck & lower spine will be trying to support the new positions which is difficult for them & thus the nerves in those areas get irritated. This is just speculation on my part but could provide an explanation in some cases.
Surgery will be your only hope of a cure from your symptoms. Make sure you know what your doctor’s surgical plan is. Will he do it intraorally or externally? Will he remove the styloid processes as close to the skull base as possible & smooth the tips of whatever he leaves behind? Will he look for calcification on your styloidhyoid ligaments & remove them if he sees calcification there? Will he do both sides at once or one at a time (one at a time is more common w/ the more experienced ES doctors on our list)?
These are important things for you to know before surgery. You want a doctor who will be thorough so you don’t have to have this surgery again.
The doctor said he has performed intra and external, but said that internal surgery usually is best when its a much longer bone, mines are 4 and 3 cm. Plus ive read that internally can be more complicated and recovery could take longer.
As far as my posture, i believe it hasnt changed. Ive gotten tons of nerve tests and there fine, but it feels like if it was a circulation issue/ nerve problem.
I believe more and more that this is my only hope, but need to be sure before i cut into my body. I believe he said that he would do both sides in one surgery.
Unfortunately no-one can be completely sure what symptoms will go from having the styloids removed, sometimes the nerves can be damaged & it can take a while for them to recover, occasionally they don’t completely. But leaving styloids in, unless you’re only having mild symptoms, isn’t really an option as you’ll continue to have pain & the SPs may well cause more damage. What you can do though is get the best possible doctor to remove them, to ask searching questions to ensure they know what they’re doing.
Is the doctor on our list? ( not that we know of every experienced surgeon!) If not you could consider a second opinion from someone with experience like Dr Cognetti for example, he does phone consults, or Dr Mark deLacure in NY, or Dr Jason Newman U of PA. Usually doctors opt for external surgery when the SPs are longer as it gives them better visibility, unless they do several incisions. Although members have had good results with intraoral still. It is also unusual to do both sides at once because of the amount of swelling, but again there have been a few members with a successful surgery this way.
But you do need to make sure that the surgeon will remove as much as possible, not just shorten them a little bit, that the pieces will be taken out, & the tip smoothed off. If the stylohyoid ligaments are calcified, they need to be removed too.
Good luck with your decision!
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Look up alice in wonderland syndrome! I wonder if eagles can cause that because I get it too!
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Here’s a link with a brief explanation for others:
Alice in Wonderland Syndrome: Symptoms, Treatment, and More (healthline.com)
That’s really interesting @Dinobone ; I had the sensation of being closer to the ground/ smaller than I am with the other weird symptoms I got from bilateral jugular compression, once the styloids were removed I’ve not had it at all. I did see it mentioned on other Intracranial Hypertension forums I looked at, so knew it was more than likely caused indirectly by the ES, but I didn’t know it had a name! Thanks for that info 
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@Dinobone Thanks for highlighting Alice in wonderland syndrome (it’s such a good descriptive name of the condition). As a child I use to experience a sensation of my hands being oversized like they were 5 times as big as they actually were and I currently live with a sense of derealisation almost 100% of the time. Although I don’t expect the childhood sensations to be associated with eagle syndrome it would be amazing if the sense of not being here could disappear with the removal of the styloid!! @Jules its reassuring to hear your experiences of it have not returned after surgery.
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I can completely and totally relate to every word you said. And more. I am so sorry.
Yes, I had mine out aged 5 and now at 67 the remnants are bigger than before, the left side more so and I get occasional tonsil stones in the fossae.
We’ve had a few other members mw ruin that tonsil tissue had regrown years after a tonsillectomy. I have to wonder if part of their size is scar tissue. It really isn’t so important as the fact that they’re a problem for you & may have caused you to develop ES or at least exacerbate ES type symptoms.
Oh yes re throat - how many times have we done LFTs suspecting Covid and each time that is NOT the reason for the sore throats. Also does your voice go weak and it becomes tiring to talk for long and it falters?
Xx
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@Mcwelly - the throat/voice issue is definitely an ES symptom. Many on here have reported it. Usually it’s caused by a stressed/irritated vagus nerve. It’s the largest & most extensive of our cranial nerves & helps control many bodily functions. Use the magnifying glass icon to search “vagus nerve image” to see where it is in the body or just “vagus nerve” for info & discussions about it.
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