My story and questions

General
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Starting in mid Feb. 2014 I began having a fullness feeling like a ping pong ball in the right side of my neck-right over the carotid artery bulb. It felt as though something was pushing on my windpipe, as well as a pulling sensation in the right supraclavicular area.

I had several more similar episodes plus some short heart palpitations usually 1-2 times per week- but growing more intense.

My PCP Dr. Kathryn Neely ordered a carotid u/s to r/o an aneurysm, also had a CT of the soft tissues of the neck 3/5/14- only showing as read- that I am missing the left side of my thyroid and the right side had a small nodule and was biopsied by an endocrinologist-negative.

3/9/14-ER visit at Kennestone after same neck fullness- more pronounced while singing at church-became very faint, heart racing- unable to get heart rate down for 30min, numbness starting at neck and going up face to top of my head. Felt like a TIA. Cardiology ref. given. Same night-had full sinuses, downward pressure right side of face, ear, jaw, teeth and began progressively painful ache behind right ear with the desire to place pressure under right ear and under jaw bone on right.

Cardio ordered echo and 30 day event monitor- echo showed slight MVP (already known) and monitor showed several episodes of PSVT’s.

More frequent episodes now with great pain in jaw, ear, neck, chest pulling-stabbing pain vs. ache in neck right over my carotid and following the path up near jaw and ear. During full blown episode-face numbness and neck stabbing- Have to recline slightly and keep head facing forward. Severe pain with turning any other direction especially to right and bending over. Only help is to sleep- but can’t sleep on sides- feels like I am impeding blood flow. Usually better in the morning and gradually worsens over the course of the day.

After a particularly bad episode- went to vascular dr- did another carotid u/s to r/o carotid dissection-no other diagnosis or help.

Went back to PCP end of March- she decides to try a beta blocker-Bystolic 2.5mg (can’t go higher due to already low b/p), hydrocodone-doesn’t touch the pain, Immitrex- didn’t help, and ordered an MRI of brain to r/o MS and sent me to Neurologist. Amazingly the beta blocker Bystolic helped tremendously! Gradually over about 2 weeks I noticed way less symptoms and although I was aware when the episodes were happening- it was way less painful. I would have a few bad days here and there, but much better.

At my cardio f/u in April- I was changed to Metoprolol-said it was less likely to affect my already low b/p-pain came back the same night I switched and I only lasted 2 days before having to switch back to Bystolic. Took about a week to level back off with my pain.- Also sent to electrophysiologist who said my heart palpitations were called inappropriate sinus tachy and should clear up on there own within a year and to continue Bystolic . Sent me also to Neuro to r/o cervical dystonia.

Neuro tried me on Baclofen- which didn’t help, so cervical dystonia was ruled out- my neck was never pulled out of place involuntarily either. Dr. Jacqueline Green talked about my case at a drug conference and Dr. Michael Johns at Emory Otolaryngology was recommended to look into whether my styloid process or hyoid bone might be pressing on my carotid and causing my symptoms.

Over the past 2 weeks it seems as though the Bystolic has stopped working. I am having a few short heart palpitations, pain is back- stabbing vs dull ache over my carotid, pulling from ear, jaw, lower teeth, under tongue in the far right back of my mouth, right chest, and intense pain during episodes with head movements (backing up car). Worst was Friday- face numbness and extreme pain with any head turning on either side.

Why was Bystolic helping? My theory is that it is a mild smooth muscle relaxer so it decreased my pulse and relaxed my carotid a bit which lessoned contact with whatever is poking in that area-No idea why it is no longer working.

Read lots of articles on Stylo-hyoid Complex Syndrome (elongated vs. calcified), Vascular Eagles Syndrome, carotidynia, Ernest Syndrome- unsure of the validity of these, but symptoms are spot on for several of them.

CT was done in March- 8 mos ago- could there be changes? Also my head was straight- could it be different if my head were turned to the right?

Very worried about the feeling of impeding blood flow and poking feeling- quite scared of a stroke or dissection.

I am seeing Dr. Michael Johns at Emory this coming Monday- he is in the same group as Dr. Del Gaudio.

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Wishing you all the best for the doctor appointment tomorrow April

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Hope your appointment goes well today. I'm assuming you are in the Atlanta area. What vascular dr did you see at kennestone if you don't mind me asking?

Also, has vagus nerve involvement been ruled out? Not sure if you have looked into the vagus nerve, but the vagus nerve can cause a lot of problems including cardiac problems and runs basically right next to your carotid artery.

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I am in the Atlanta area. I don't remember which doctor, but he was with the Wellstar Vascular Surgical Associates. I have not asked about the vagus nerve. I have asked about nerve involvement in general with the neurologist, but nothing has come of it. Trying to stay hopeful for today's appt. with the otolaryngologist.

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Dr. Johns diagnosed me with hyoid bone syndrome and I am to start steroid injections to the area weekly. He also wants me to do a 3 month trial of reflux med to see if that started it all in the larynx. Hoping I have done answers.

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April E, I am from Alabama and just had surgery 2 weeks ago today at Emory by Dr. John Del Gaudio. He is the only specialist in that office that sees Eagle’s Syndrome patients. You need a 3d ct scan and they will be able to see the bones, arteries, all of it. I had 2 1/2 cm removed from the left side and will need the right done eventually. I feel so much better already. I was having palpitations and a wide variety of symptoms and this surgery had already gotten rid of almost all of them. (Hopefully the rest after I heal completely.) Both of mine were very long and wrapped in between my carotid arteries.

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He said he didn’t think it was Eagles and pressed all over in mouth and neck, and did a flex scope. Said my pain was over hyoid and thyroid cartilage. I’m going to try the kenalog injection as if it’s the hyoid I’ll know if it helps. If not I’ll inquire more about another scan. He seemed pretty knowledgeable about Eagles, hyoid complex and carotidynia. Also wants me to try PT.

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It sounds like the CT scan you had didn't say anything about elongated styloids, but I just wanted to mention that often the styloids won't be mentioned because the radiologist didn't know to look for them. In order to make sure they look for them, the instructions to the radiologists should clearly specify to evaluate for elongated styloids.

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I agree with heidemt. Also, even with my xray, Dr. DelGaudio wasn’t convinced I needed surgery and felt all over my neck, throat, & said half my symptoms were not related to ES. It wasn’t until after my ct scan that they called me pretty floored with how long they were and set up the surgery for 2 weeks later. Additionally, even I could see them in the xray and the first radiologist didn’t even mention them. As for the flex scope, it doesn’t see through tissue so it rules out other things but could never confirm ES. I go back for my 6 week check up in December and can’t wait to tell the Dr that all those “unrelated symptoms” are now gone since the surgery. ES is NOT the same for anyone and the symptoms do vary tremendously. I was having palpitations, ear, neck, skull, back, jaw pain, headaches, toothache, all coming and going with no consistency. In a few weeks, push for a 3d scan. If he argues, ask to see Dr. DelGaudio. If you have to lie about your symptoms to get that scan then do it. They are so willing to run 10 other tests except the one you need. Good luck and keep us posted!

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Thanks! I did have a regular CT scan of my neck which was unremarkable. I will ask about the 3D scan next week when I go for the steroid shot.

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Heather- I think you are right. Dr. Johns in the same Emory office- gave me 2 of the steroid injections to the most painful area in my neck- and boy were they painful! I don't believe they were helpful. I am still having pain at least 3 times per week- between a stabbing and aching from right chest up to ear. I can pinpoint the worst pain between the right side of the hyoid and thyroid cartilage. I was supposed to go in for another appt today, but I emailed him and said I did not want anymore injections and would like a scan with my head turned to get a better view of anything that might be poking me. He emailed back that he was sorry but other scans and surgeries won't be helpful-so I cancelled quite upset. The only thing that has helped is a beta blocker- Bystolic and Klonapin- to help me sleep when I am in pain. I go back to my cardiologist in March (palpitations) for another echo and will ask if that will show anything. Also thought about asking my dentist to do a panoramic. So frustrating. I thought I would get some answers at Emory. He did call it hyoid bone syndrome, but offered no other help besides the steroid injections. I know Heather mentioned Dr. DelGaudio, but how far would I get within the same practice seeing another doctor?

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Great to know April. Ok here is the deal Dr. DelGaudio has a terrible beside manner and is very dry in personality. My follow up visits have been disappointing as he only wants to hear my symptoms are better and most are better but I still have the other side to go and I asked when to do that and he said it was up to me. He was hard to convince until I told him I was already diagnosed - then after the xray he sent me for the ct scan. I’m so sorry this other Dr has failed you. I think you should go get that panoramic and get the copy to bring back with you. Either a cervical xray or panoramic will work. Once that is in hand call back and don’t mention anything besides needing an appt with DelGaudio. Once in his office show the xray and tell him your symptoms and request the ct scan. If nothing else he will do it to see what’s in there. I really hope this works!