Today is so bad...Need support 😭

I feel like something moved or changed overnight I have most symptoms on left side. I am having more pain, feel like throat is swollen, like something is poking it inside, scratchy. Eye pressure, eye pain & eye floaters. My head is pounding & the ringing in my ears & head is making me crazy. Have this loud whooshing sound in my head. Popping & cracking at base of skull. My neck on left side is throbbing & it feels like it’s bulging & like it could explode. Heart palpitations, face feels a little numb, tongue feels numb… Just super worried right now. I cannot take this pain & all of these insane symptoms too much longer. Nearly 2 years of this. I am at my wits end with this & the doctors. Just needed to vent I guess & ask if I should be immediately concerned about the way I am feeling. Thanks in advance for any help or encouragement. :rose:

WOW, painh8ter!

Sounds like you had a really tough day. I’m so sorry! I hope tomorrow is better & that symptoms subsided some as the day passed.

You might have both IJV & ICA compression going on. It’s rare but can happen depending on the internal layout of your neck. With symptoms like you mentioned, it’s a good idea to see if there are certain head positions that make everything worse or better. If so, try to stay away from the troublesome positions & steer to those that help relieve symptoms. Once everything is flared up, it can take time (hours/days) for them to calm down again even w/ proper head position. Some of our members who have vascular ES have found that taking low dose Plavix (an Rx blood thinner) was helpful, but we did have one member it didn’t help. Your situation sounds pretty serious so getting help sooner than later would be a good idea.

I recommend that you make an appointment w/ Dr. Newman or Dr. Cognetti in Philadelphia for a second opinion so you have that on your calendar & especially if the first appt doesn’t provide you w/ help. I suggest Dr. Newman first instead of Dr. Cognetti, because Dr. Cognetti doesn’t make ES a priority in his practice, & it can sometimes be a long wait to see him for ES. Both are experienced ES surgeons.

Often ES symptoms feel more severe than they really are, HOWEVER, if you do get stroke-like symptoms or start passing out, a trip to the ER would be a good idea. It would be important to let the ER doc know you have ES w/ possible vascular compression. Sadly, there is a chance the ER doc won’t know about ES, but it’s good for you to pass along the info anyway. ES symptoms have a habit of being worse some days & less bad others & even going away for awhile then coming back. They are very unpredictable. The way you felt today could have been caused by your head position when you slept last night. If you can stabilize your head so it doesn’t get into a symptoms causing position during sleep, that should help.

That’s all I can think of for now. Hopefully if others have ideas, they’ll send them along.

Sending you a hug. :hugs:

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Thank you so much for this. Would I need another referral to see one of the dr’s you listed in Philly? Will try to call them & see what they can help me with. They must be pretty booked out? Anyhow, this is just awful & I want help asap! Take care :blue_heart:

That sounds really rough, I feel for you…the symptoms do change seemingly for no reason, you might have had your head in a slightly different or awkward position without realising, slept a bit funny, even talking more than normal can sometimes make symptoms worse for some members!
I agree that you do sound like you have vascular ES symptoms- the head pounding, & tinnitus can be from jugular vein compression, it can also cause compression of the optic nerves but this is very rare. (I don’t know the US system, but in the UK you can see an optician without a referral & they can check eye pressure for you- that might be something you could get checked while you’re waiting for a referral?) The numbness in your face & tongue could be a compressed Facial or Trigeminal nerve, compression of the Vagus nerve can cause palpitations, but so can carotid artery compression…I do agree with Isaiah that you should go to the ER if you do get stroke like symptoms or if the palpitations get worse…
Definitely worth ringing to ask the PA doctors about waiting times & if you can self refer- Dr Cognetti will do phone appts, not sure about Dr Newman. But to get a scan would be really helpful, I think you need to push your doctor to get one done…
Sending you a hug, & hope that things improve for you :hugs:

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Thank you so very much for everything. So glad I stumbled upon this place. I 1st found & joined the facebook group. They are all wonderful as well but some of the horror stories from bad doctors to bad surgeries just has me scared, anxiety is up & I am totally overwhelmed by what all I need to get out of mt 1st ENT visit this Friday. :disappointed:

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We’ve heard others say the same about the FB group, not been on it personally though.
Isaiah posted these questions in one of the other discussions, which covers ideas for what to ask your ENT:
When you have your appointment, it’s very important to ask these questions:
Are you familiar with Eagle Syndrome? If so, have you done ES surgery? If the answer is yes, go on to the bullet point questions below. If the answer is no, please ask for a referral to someone who is familiar with ES, or take a look at our doctors list & see if there’s someone on it who’s relatively close to you. If there isn’t anyone close by, and traveling is an option for you, we can make recommendations for the most experienced doctors who are closest you.

• How many ES surgeries has the doctor/surgeon done?
• Which surgical approach will be used i.e. intraoral or external?
• How much styloid will be removed (removal as close to the skull base as possible is the best answer) & will calcified stylohyoid &/or stylomandibular ligaments be taken out or left in place (yes is the best answer)?
• Does the surgeon do bilateral surgery (i.e. both sides at once) or unilateral surgery (each side requires a separate surgery bilateral cases). (Most docs don’t do bilateral surgery)
• Will a hospital stay be required or will surgery be done outpatient?
• In the doctor’s experience, what percent of symptoms relief has (s)he seen from surgery? (50-80% is the norm but some people get almost complete recovery)
• What is the expected recovery time? (Some doctors say two weeks. This is unreasonable. Two months up to a year for nerve recovery is more normal).
Surgery can have very good results, but you do need an experienced surgeon.

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You have totally got this! Take care of yourself, that’s the most important thing. You can certainly have a checklist of questions, concerns, etc. However, I hope for you that the doctor is caring and considerate, explaining everything, giving you lots of information about your specific case, and giving you a feeling of security. This is a huge, scary diagnosis, and it’s okay to be anxious. Love, hugs, and support to you!

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Thank u so much. I am so nervous that I couldn’t sleep. Will be leaving for ENT shortly. :rose:

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He was very caring, attentive & knowledgeable. He was patient while I asked all the questions I had & best of all is he knew what Eagle’s was! He has ordered ct w & w/o contrast this next Tuesday. He says by looks of the pano from my dentist, I do have ES. He has done many surgery’s! Fingers crossed! :blush:

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Yay! That’s super awesome! Hope you can breathe easier now and enjoy a great weekend. Big hugs! :blush:

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Hw did give me a little hope! U have a great weekend too!

Did you end up seeing Dr. Goldenberg or his associate? I’m really glad you had a good appointment & that the appropriate tests are being ordered! You’re on your way down the road to recovery. It’s one step at a time, but you’ll get there!

:hugs:

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Dr Goldenburg was not there so I saw Sr Beauchamp. The nurse taking me back to exam room hadn’t heard of ES & I was already nervous to possibly be having to educate a surgeon about this. I was so keyed up about the appointment that I couldn’t even sleep last night. He walks in and introduces himself & asks how can he help me. I was shaking & handed him the pano x-ray from my dentist & he said,“Ohh, appears to be bilateral ES!”
I nearly cried. He said it is rare & not many doctors know about this. He also said I was born with this. I feel that opinion differs between doctors as some say it is from trauma.
He has me getting my CT’s early Tuesday morning. He also thinks there is narrowing of a place in my spine? So after CT will be MRI for this. I am relieved for now.
Question, does anxiety/stress cause symptoms to worsen? I feel it does for me. All neck & trap muscles are super tight he said. Seems a little less painful now that I have relaxed a bit.
Thanks so much to all who have helped me this far, this group had me armed & ready with knowledge about ES! :blush::rose::purple_heart:

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So EXCITING that you had a great doctor appointment!! HOORAY!!!

YES!! For sure stress makes symptoms worse because it increases cortisol in our bodies & cortisol stimulates adrenaline which puts us in flight, fight or freeze mode. Even low levels of those hormones can cause muscles to lock up in preparation for whatever is coming. Additionally, one of the nerves elongated styloids can irritate is the accessory nerve which affects neck & shoulder muscles which in turn can cause arm & hand symptoms. You may have a combination of accessory nerve irritation & stress causing your neck/shoulder tightness. Some people have found that magnesium gel rubbed into those muscles helps them relax. Another option is taking warm baths in epsom salt (which is magnesium chloride). Use 1 cup of epsom salt in a tub of warm water & soak for 10+ min.

I’m really glad for another name to potentially put on our doctor list. When you go back for your follow up appt after the CT scans, please make sure to talk to him about what type (intraoral or external) of surgery he does & how much of the styloid he removes as those are important facts to know before committing to surgery.

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So pleased that your appt went well & he was knowledgeable about ES! that’s really good!
Definitely stress can make ES worse; for the reasons Isaiah mentions above, plus with stress if someone has vascular ES the blood pressure increase with stress will make those symptoms worse.

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I feel like I have vascular. He said it is also bilateral with me. I just want them out. He said to not get my hopes up that surgery will make me better. He said it’s a mix, it helps some but not others. I feel within my being that it will help me tremendously. Just praying it does, if I have to have the surgery, which I feel I will.

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Throwing support your way from Iowa! Like many people who have had successful outcomes via intervention say. It gets better with time and knowledge. It seems you have some knowledge now comes the hard part. The road to recovery! This community walks with you!!

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Thank u so much! Means so much to me :rose: