Hi everyone, just wanting to put it out to u all to see if any of you have had heart palpitations or vision loss with your Eagle syndrome if any of you have suffered from Vertigo? This is starting to scare me.... On a good note, I have my appointment with Mr.Bernard Lyons in Melbourne this Tuesday, hopefully some answers and help :)
Vision loss would concern me. I didn’t have any of those things with ES. Hope you get some answers soon
Hi, I am still trying to get a confirmed diagnosis of Eagle Syndrome so I'm not sure how helpful this will be..but I have often mild vertigo, and my vision in my right eye becomes significantly blurry some days (all my symptoms are on the right side). Hope you get some answers on Tuesday :)
I had a constant off-balance feeling, although some things would set me off on a more severe dizzy spell, like walking round corners a bit quick (?!) or fast moving things on TV. I have also had blurry and sometimes slight double vision in the eye the worst side. I had vascular ES and I think some of the symptoms were from Intracranial Hypertension, because the styloids were compressing the jugular veins. It might be worth seeing an optician just to check that you haven't got increased pressure behind your eye- it can squeeze the optic nerve. Hope you get on okay with your appt.!
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I wanted to say I actually have these things, but with the ES I also have Multiple Sclerosis, and you can see vision loss, off balance/dizzy etc with that also. I had ES surgery, but am still off balance/dizzy. Would have been nice for me if those things disappeared after my surgery! Nerve pathways can do all sorts of bizarre things. I am post menopausal, so I get a bit of heart fluttering from that
Vertigo is not an uncommon ES side effect. MauiMiracle had a terrible problem with it and went through rehab therapy for it. She learned some exercises she could do at home to help her feel less dizzy when her vertigo would set in. I think she's doing very well and is vertigo free now that she's healed from her ES surgery. I've also had vertigo and intermittent partial hearing loss which I think are ES related.
On the side w/ the elongated styloid, I get pressure behind the back of my eye that feels like it's trying to push my eyeball out of the socket. It happens only occasionally and is not usually painful.
ES manifests itself through many odd symptoms. There are a number of symptoms that are common to most people, but there is a subset of symptoms that seems to be unique to each individual as well.
I hope Mr. Lyons was able to give you some help and hope when you talked to him.
:)
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Yes, my ENT surgeon did mention a therapy for dizziness, but the doc he suggested was too far fore to see
Yes, as Isaiah 40:31 mentioned, I did have severe vertigo. I also had heart palpitations and eye pressure (no vision loss). Vertigo was my first symptom back in August 2014 and was diagnosed as BPPV (Benign Paroxysmal Positional Vertigo) which is an inner ear issue that can sometimes be treated successfully with repositioning maneuvers (I used Epley Maneuver). Basically, with BPPV the calcium crystals (otoconia) in our inner ear get dislodged and end up in one of 3 semicircular canals. As these free floating crystals move through the canals when we tilt our head forward, backward, left, right...our brain gets confused and vertigo (spinning) occurs. I had assumed that my vertigo was due to a really bad fall I had in July 2014 where these inner ear crystals possibly got dislodged, but now I truly believe that my ES was also a player. Most people respond quickly to these "repositioning maneuvers", but I did not. My vertigo did improve over time, but even my ENT doctor and Physical Therapist were stumped as to why my vertigo wouldn't completely go away if it was indeed 100% caused by BPPV. That is why I believe ES also was a cause. My vertigo finally went away completely last month, July 2015 (4 months after my ES surgery).
So in answer to your question, yes, I do believe ES can cause vertigo! I believe my heart palpitations were caused by the right styloid ossified ligament pressing on my carotid artery, and I am not sure what caused the eye pressure I had, most likely nerve compression.
ES can indeed cause some very interesting, uncomfortable symptoms and each case is completely different from the next. In addition to heart palpitations, I could not turn my head at all for months or else I would pass out. That was caused again by the styloid ligament compressing my carotid artery. All in all, the surgery removed 100% of my symptoms and I am an advocate for ES surgery. My quality of life has been restored thanks to my wonderful surgeon and I am so grateful.
I hope this information helps you and gives you encouragement and hope for a much healthier tomorrow. And please do not be afraid to have the surgery if your are having severe symptoms. The surgery truly can give you your life back.
Best of luck to you Damjo & God Bless!
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Maui Miracle- who is your surgeon?
Thanks, Val
My surgeon is Dr. Scott Newman (ENT), with Kaiser Permanente, Wailuku, HI (Maui). He did an excellent job on my surgery. I had bilateral external styloidectomy where 4 cm were removed from right and 6 cm from left. He only left 1-2 cm of styloid process and removed entire styloid ligament all the way to hyoid bone. He performed a "face lift" cut around both ears, so no scars on my neck. I recommend him highly, very qualified & professional.
Valerie said:
Maui Miracle- who is your surgeon?
Thanks, Val
Yes, I have severe dizziness, eye disturbance and also high blood pressure. But not all ENT dr. I visited believe that ligament calcification cause this symptoms. Only one of the Dr. said; your symptoms may caused by the calcification but he is not sure.
If you want to see pictures of the "face lift" cut click on the photos link at the top of the page. Several people have posted their post op incision pictures. Dr. Samji does a cut in the neck. I'll try to add a pix of my scar which is almost invisible. Either type of external incision works for "getting the job done."
:)
Maui Miracle said:
My surgeon is Dr. Scott Newman (ENT), with Kaiser Permanente, Wailuku, HI (Maui). He did an excellent job on my surgery. I had bilateral external styloidectomy where 4 cm were removed from right and 6 cm from left. He only left 1-2 cm of styloid process and removed entire styloid ligament all the way to hyoid bone. He performed a "face lift" cut around both ears, so no scars on my neck. I recommend him highly, very qualified & professional.
Valerie said:Maui Miracle- who is your surgeon?
Thanks, Val
off to get a MRI and Ultrasound on the Corited Artery as my ENT Doctor has a few concerned, not willing to talk much about it until he has all the tested possible on the table to discuss with his team , then we go from there. waiting game now, but now finally I have a Doctor that is helping me :)
Damjo,
I just wanted to add that I too had MRI & Carotid Doppler testing done, but both tests came back normal. Neither showed obstruction to my carotid artery, but I definitely had obstruction with head turns. I am not telling you this to discourage you, just to let you know that sometimes the tests don't tell the whole picture. My doctor could tell through tests that my styloid ligament was very close to the carotid artery, but not that it was obstructing flow. It was not until he did the surgery that he saw the ligament literally laying on top of my carotid. The reason for the face-lift cut was because my doctor was concerned about the proximity of the ligament to my carotid, and felt this approach would provide him a better angle to approach this delicate area. But that was for my situation, yours may be entirely different.
I pray that your tests do give you and your doctors some answers so you know how to proceed. But no matter what they show, just know that your symptoms are real and something is causing them. Never give up hope!
You need to get a CT scan to really seed the styloids as they are bone. MRIs and ultrasounds see soft tissues best. Please ask them for a CT scan. If you get one with contrast it will also show if your styloids are pressing on your carotid artery or jugular vein. This information will be very helpful to your doctor and his team.
I have had heart palpitations & vertigo & hearing loss & pressure behind my eye & in my neck & throat. I'm having my second surgery on Mon. and can't wait to see if my symptoms go away.
:)
Yes, I agree that a CT scan with contrast will give your doctors the most information, especially if you are having vascular issues. They can see the bone of the styloids as well as vascular structures and possibly determine if the styloids are impinging on carotid artery or jugular. (When I went into the operating room for my surgery, I noticed my doctor had pics from my CT Scan up on all the walls for reference.) But I also believe that the MRI and carotid doppler (ultrasound) are excellent tests and may prove helpful as well. The MRI expecially gave me piece of mind that my symptoms were not due to tumor or any other cause other than Eagle Syndrome and that my brain & brain stem were normal. Keep us posted!
Isaiah 40:31 said:
You need to get a CT scan to really seed the styloids as they are bone. MRIs and ultrasounds see soft tissues best. Please ask them for a CT scan. If you get one with contrast it will also show if your styloids are pressing on your carotid artery or jugular vein. This information will be very helpful to your doctor and his team.
I have had heart palpitations & vertigo & hearing loss & pressure behind my eye & in my neck & throat. I'm having my second surgery on Mon. and can't wait to see if my symptoms go away.
:)
Maui Miracle said:
Yes, as Isaiah 40:31 mentioned, I did have severe vertigo. I also had heart palpitations and eye pressure (no vision loss). Vertigo was my first symptom back in August 2014 and was diagnosed as BPPV (Benign Paroxysmal Positional Vertigo) which is an inner ear issue that can sometimes be treated successfully with repositioning maneuvers (I used Epley Maneuver). Basically, with BPPV the calcium crystals (otoconia) in our inner ear get dislodged and end up in one of 3 semicircular canals. As these free floating crystals move through the canals when we tilt our head forward, backward, left, right...our brain gets confused and vertigo (spinning) occurs. I had assumed that my vertigo was due to a really bad fall I had in July 2014 where these inner ear crystals possibly got dislodged, but now I truly believe that my ES was also a player. Most people respond quickly to these "repositioning maneuvers", but I did not. My vertigo did improve over time, but even my ENT doctor and Physical Therapist were stumped as to why my vertigo wouldn't completely go away if it was indeed 100% caused by BPPV. That is why I believe ES also was a cause. My vertigo finally went away completely last month, July 2015 (4 months after my ES surgery).
So in answer to your question, yes, I do believe ES can cause vertigo! I believe my heart palpitations were caused by the right styloid ossified ligament pressing on my carotid artery, and I am not sure what caused the eye pressure I had, most likely nerve compression.
ES can indeed cause some very interesting, uncomfortable symptoms and each case is completely different from the next. In addition to heart palpitations, I could not turn my head at all for months or else I would pass out. That was caused again by the styloid ligament compressing my carotid artery. All in all, the surgery removed 100% of my symptoms and I am an advocate for ES surgery. My quality of life has been restored thanks to my wonderful surgeon and I am so grateful.
I hope this information helps you and gives you encouragement and hope for a much healthier tomorrow. And please do not be afraid to have the surgery if your are having severe symptoms. The surgery truly can give you your life back.
Best of luck to you Damjo & God Bless!
MAUI MIRACLE...WHERE ARE YOU FROM? tHANK YOU <3
She's from Maui, HI
Zdravka said:
MAUI MIRACLE...WHERE ARE YOU FROM? tHANK YOU <3
I am new to this but have been suffering for almost a year and may have just received my answers to what has been going on with me! It stated out with with a lot of numbness on my left side if my face and sometimes a pop in parotid gland area. The sensation is hard to explain but it’s definitely hard to deal with. I would feel.like something is tearing or pinching me all day long. The numbness I think has been the hardest to deal with since it causes my left eye to be numb as well! I have had palpitations and spams in my esophagus. I have had shortness of breath and this same sick feeling from the left side of my face would feel the same way in my chest. I went to ENT in Brevard county FL and you think he would of read the CT scan that he ordered but I’m fact he said I was ok…WHAT HE DIDN’T KNOW IS I HAD MY REPORT BEFORE HE DID! I thought he would of talked to me about what my options were but he said I was ok. I went back to my nuro for the numbness and I showed him the report so he gave me a referral to MAYO clinic and 1.5 months later I went there and the styli processes went from 3.5 from the first report March 31st to 5.1 cm in mid may! It’s on both sides and to the hyoid bone as well! I have to have surgery but the issue for me is that the DOC AT MAYO has only done 10 of these surgeries. I decided I need another opinion from.someone who has performed more than 10 of these so am going to ucla next week with all my reports and images to make sure they listen to me. I am so over this!! I have struggled for a year of my life and thousands of dlrs later I am still struggling but only worse. .let’s hope for the bst!