I am new to the forum and newly diagnosed with ES. I am waiting for my first appointment with a doctor in Houston. My apologies if this has been discussed previously, but is there any info regarding the angle of the SP being a factor in dizziness and nausea? I am having a variety of symptoms I assume are associated with the length and position of the tip, including tonsil lump, pain, globus sensation, burning mouth, facial pain, palpitations, etc. but am wondering if anyone has any details (from the literature or from personal experience) on the angle and whether any particular positioning of the SP is more likely to cause the dizziness effect. The dizziness, nausea, and fatigue are the worst for me right now. Hard to know if these non-specific symptoms are due to ES or something unrelated. I’ve uploaded my 3D CTs (thanks for instructions on how to convert from 2D). Hope they are visible. I know that no medical advice can be given here…just including the images in case anyone is interested:) Also, I plan to ask about an angiogram at my appt…just hoped to hear thoughts from others in the meantime.
Wow, your stylpids look pretty long & pointy! There is a section in the Newbies Guide about symptoms & possible causes, which neves could be involved etc. Dizziness can be a vascular ES symptom- if they compress arteries then blood flow is affected to the brain- some members have found this comes on when their head is in certain positions, sometimes leading to passing out. Otherwise if the styloids compress the veins in the neck, blood can get into the brain okay, but can be impeded coming out, which can raise the pressure inside the head (Intracranial Hypertension) which again can cause dizziness & brain fog.
The nausea could be caused by dizziness, but also we’ve seen quite a few members who have possibly had the vagus nerve affected; this regulated digestion so can cause nausea.
There have been other discussions about this, so if you do want more info feel free to use the search function & chip in with any you find. I hope that you find a surgeon you’re comfortable with, but even the best surgeons don’t really understand some of the ES symptoms!
I second Jules opinion - WOW! You have very long, very pointy styloids!! Impressive even!
The vagus nerve serves several purposes in the body, as Jules said, digestion, but I’ll add - regulation of heart rate, & it has some affect on anxiety levels. Your heart palpitations could be due to an irritated vagus nerve or due to vascular impingement by the styloids or some other ES unrelated cause. Many people have heart palpitations as an ES symptom, & they do stop once the styloids are removed. There are a number of cranial nerves that run through the part of the neck where the styloids reside & any of these can be disturbed by elongated styloids/calcified s-h ligaments & thus create symptoms relative to what they innervate.
When you see your doctor at your first appointment, don’t do a “symptoms dump” as there are some doctors w/ whom you would lose credibility if you give a laundry list of symptoms you think ES is causing. Stick w/ the main & more “normal” symptoms i.e. tonsil lump, throat pain, globus sensation, facial pain, ear pain, neck pain, etc. When you get to burning mouth, heart palpitations, nausea & even vertigo, you may get the answer “ES doesn’t cause those sorts of problems.” We who’ve had ES know it does, and we have experienced recovery from those symptoms once the styloids are removed.
Thanks, Jules. I have my first appointment with Dr. Robert Parke at Baylor College of Medicine in a week. Will let you know what he says.
Thanks. This is interesting and is in line with what the ER doctor told me last night. I went in with almost non-stop palpitations and extreme dizziness and fatigue. Also had pain in left arm and weird, cold sensation on left side of head. I assumed this was related to the primarily left-sided throat pain and probable nerve involvement but was genuinely worried about my heart. EKG was fine though. The doctor explained that the carotid has the ability to sense the contact with the SP and can cause the a vasovagal response (dizziness/nausea/feeling like passing out). I think it’s interesting that this has all become really intolerable in the past few weeks…they’ve apparently been growing for a while;) I would say that I’ve been getting really sore under my jaw just recently so maybe the constant irritation now was the tipping point…
The carotid arteries & jugular vein are the most common vascular tissues the sps contact & wreak havoc with so the ER doctor’s info is good. The axillary nerve is also commonly affected. It innervates your shoulder, muscles in your neck & part of your arm thus could be an explanation for your arm pain. The trigeminal, hypoglossal & glossopharyngeal nerves are also commonly affected. You can Google them to see what their functions are but a quick summary is they innervate face, tongue, vocal cords, throat, etc.
Elongated styloids or calcified s-h ligaments sure can make a mess of things in our necks!!
Thanks for your help, Isaiah_40_31. Great info.
I’m glad that you got reassurance fron your hospital trip, & am very impressed that they knew about ES! It is weird how symptoms suddenly escalate, unfortunately it is pretty common!
Jules, they had never heard of ES but the doctor did some reading about it while I was receiving the fluids.
Hi! I had all of these symptoms! Serious episodes of feeling unwell nausea etc. had both surgeries. All issues gone except i still have IBS/SIBO. I do believe eagles caused this. I highly recommend surgery to remove eagles. Good luck!! Eagles is awful but u will get thro it xoxox
Thanks, Cupcake5. Interesting about your IBS/SIBO. I have wondered if my Crohn’s Disease had any role in ES. It has been quiet for a long time until just recently. You had surgery on both sides? External? Where did you have them done at?
@redbird773 i had both sides done externally through outside of thr neck. Right side june 2018. Left side sept 2018. I am in CT. So i traveled to Dr Cognetti in PA. I found him from this site. I cannot tell you how many drs i saw in 2 years noone was able to help me. Noone knew anything about eagles n i was shooed out of offices. Im sorry u have chrons! My mom had chrons. Her dr misdiagnosed me with chrons in 2009. I had another colonoscopy in august 2018 they told me no chrons but i have inflamation of small intestine and tested positive for SIBO/IBS. Sibo comes from gut motility issues from nerves not moving your GI track properly. These issues started same time as eagles so im sure they are related. I also had heart rate issues with eagles. I was really feeling like i was going to die. Eagles is no joke. Im so sorry your going through this too. Def use this site to find an experienced Dr it will save you a lot of time, money and frusteration. Lmk how u make out!
Thanks so much for the info @cupcake5. I’m glad the surgery was a success for you! I’ll let you know how things go for me.
Redbird773, I feel horrible for you…this has got to be the worst case I have ever seen! I suffered for 17 yrs. and I had the nausea, dizziness, and globus sensation. ES is so painful and it is hard to find a physician that is knowledgeable. I moved from Houston, to OKC and it was then that I found Dr. Greg Kremple, who diagnosed me and sent me to Dr. R. Layton Runkle at Norman Reginal Hospital in Norman, OK. BTW, who is the physician you are seeing in Houston. I saw 2 physicians in Houston, Dr. Russell W.H. Kridel ENT who went into plastic surgery, and Dr. Walter Douglas Appling, ENT., who also went into plastic surgery. I get anxiety just thinking about all the crap I went through trying to get diagnosed. Only advice I will give to you is, HAVE THE SURGERY AND HAVE THE STYLOID PROCESS AND TONSILLS REMOVED. Once they are removed, you will eliminate a who bunch of problems. Has I not pursued my healing, I’d be dead…I was giving up.
So, how are you doing now?
Yes…My life is so much better. Now I deal with neuropathy in my hands and feet. That can be managed but, ES was a death sentence and those of us who got diagnosed and had the surgery are better.
Hadassa, thankfully I have not suffered for near as long as you and some others did. It’s only been an issue for me for about 6 months. I’m trying to get in to see a doctor at Baylor College of Medicine in Houston. I have an appointment next week, but they may change it again.
I remember the day I had the beginnings of ES. It was Dec.24, 1987. I lived in Alvin, TX. I had just had my son on Dec. 8th so, the day I felt that swallowed a small bone (I was eating a LeMenu Florentine breast of chicken and when I swallowed, it felt like a bone got stuck.) That was the beginning of hell for me…I ended up in the ER in Alvin and was sent to SE Memorial in Houston, and then to St. Luke’s. I spent the night at St. Luke’s on Christmas Day. I had a 4yr. old and the newborn. It was sad because I was really sick. All the doctors I went to shrugged it off as, Post Partem depression b/c I had just had a child! I was suffering and only I knew what I was feeling. My husband also suffered with me because, I could not get diagnosed and he knew I was suffering. At the time, he was a Paramedic/firefighter with Houston Fire Dept. so, he had allot of stress, too. It wasn’t till after much prayer, God led me to move to Oklahoma. It is there that I finally got diagnosed but, up till then, I never had a diagnosis, ever! Dysphasia (pain in neck) is all they ever came up with…Only thing I can say is, you got a diagnosis! That is half of the answer…do the surgery, please. Don’t suffer anymore than you have to. Can you tell me who is doing your surgery? Make sure you let this blog know b/c it is so important.
Sorry to hear you had such a terrible time with ES, especially at that point in your life. Glad you finally found a doctor to help you!!! I have not yet been told I need surgery, but I am scheduled to see Dr. Parke this week. This may change to Dr. Donovan. I am waiting to hear who the final doctor will be. My ENT did not diagnose me with ES. He said there was a chance that the hard object in my tonsil was a mass and so I ran as fast as I could to MD Anderson. The head and neck department will see patients without a referral. The resident missed it but the doctor I went to see did not. She knew right away what it was after she palpated my tonsils and I had my CT in hand so she confirmed it on the spot (the radiologist also missed the styloid process length, so there was no note about this in his report). She said that surgery was the common treatment approach. But since she is a cancer doctor only, I had to find another doctor to obtain a surgical consultation. As a former smoker, I was actually incredibly relieved to hear that my issue was not cancer and it was treatable. I did send a detailed email to Dr. Samji’s office early last week but they have not yet responded. Still trying to decide if traveling to CA would even be wise…especially regarding flying after surgery and follow up care.
If you have any of the pain I had, I just don’t see how you would want to prolong your healing. I had to totally put my hands at the feet
of my Messiah, totally. I was tired of just mechanics(drs.) telling me I was depressed, or crazy which I was not! I went to the manufacturer.
He is the one who ordered my steps to come to Oklahoma. Three years later, I finally got diagnosed and I had the surgery. It is a hard
surgery. People can bleed out but, for me, it was win, win. If I died, I would be with my Father but, If I lived, I would be healed. So, for me, I
made the right decision.