So I'm really struggling with my possible diagnosis of Eagle's. That's what my doc thinks I have. My most difficult symptom is dysphagia and pain when swallowing. Can others tell me about their experiences with this symptom? I have been mostly living on "baby food" for over 3 months now and I'm so miserable. I eat mashed potatoes, soups, guacamole, some bread, rice, and pasta, but even those 3 things can be too painful at times. It's been rough. I am not 100% convinced I have Eagle's - but there seems to be no other likely diagnosis for my suffering. But I haven't seen too many people comment on trouble swallowing so I guess that's why I'm hard to convince. Is this kind of thing similar to what others have dealt with at all? Commiserate with me please!
I have suffered with the exact same as you! Nightmare sums up everything. Careful on that soup stuff i did that too for 6 months witch caused me to get gullbalder stones then i had to have that out. I have found good chiropractor not just any. They have been a mericle for me that and low dose of xanax for anxiety. I have come sooo long in last year. I can eat pizza fruit jello ham bacon coleslaw my diet is 90% normal. Talk to your family Dr about any anxiety meds. Massages from my chiropractic help me too.
Yum, the mushy pain diet. When food loses all positive meaning and only becomes a task you complete regularly to stave off cramps and take your pills.
I didn't have the stabbing, bone in throat, style pain when swallowing I heard about until the last few months before surgery. I had to duck my head to swallow, it was so painful and the muscles just weren't doing their work until I bobbed around like a duck eating bread.
Mine was usually more neck tightness and spasm insanity. Chewing, or head turning, or swallowing would set them off and send me into gagging fits. If I tried to eat fast to out-run them, I'd wind up losing my whole dinner.
Surgery hasn't fixed All my weird neck issues, but I think I've eaten more food since surgery than I have in the past 2 years! And managed to keep all of it inside of me.
I'm a little out of touch with the recent posts, but do you have images yet? It's good to have a plan B ready to look in to, especially if you're so miserable you're on a paste diet!
Thank you both for commenting. I am new to the site so this is my first time posting! :)
I have had a CT with and without contrast. My ENT said my stylo-hyoid processes are long - he never mentioned how long (He also palpated my tonsillar fossa which was painful and gave me a Lidocaine injection in that area which relieved my symptoms hence his reasoning for the likely diagnosis). I'm trying to find someone to have a second opinion with. If the second doctor is also convinced I have this then I will have the surgery. My current doctor states he can't be 100% positive I have it without trying surgery, so naturally that makes me nervous. But I'm so desperate for relief and to eat normal foods again.
I think I'm also nervous because I never had a tonsillectomy and haven't had any trauma to my head - and no one has mentioned my stylo-hyoid processes being wrapped around any arteries so that doesn't match up either. Also my doctor said the longest stylo-hyoid process is on the side that doesn't bother me, so that seems odd too!
Anyway, I appreciate hearing that I'm not alone in this and that others have had similar issues. I have been seeing a chiropractor and getting massages. I do think they have helped a bit. I really would love anti-anxiety meds but no one wants to prescribe them. But I keep telling everyone that the anxiety, for me at least, is the worst part of this. I cannot function like a normal person it's become so debilitating. Eating a meal is likely to cause a panic attack and I just never know when I will get to eat a meal or choke on a meal. I've choked on several pills though so refuse to take any medications that aren't liquid - so that might mean no anti-anxiety meds for me for now anyway. Sigh.
They sell pill crushes at any pharmacy. I have been crushing my meds for over year add little sugar to it water stir it ok. I had talk to compound pharmacy they told me what to do i even crush protonics for acid reflux that says do not crush or chew i asked pharmacist he said it is ok. Sound like you need to find new family Dr. Said after week of haveing those symptoms he prescribed me low dose of xanx. I know i had the same panic attack when i ate to it scary. My ES is classic some people have vascular. My Drs that i have saw said everyone has these styloids but not all are asymptotic of it. Mine is so huge my chiro said it looks scary but told me it not so bad he could take it on. On just regular x rays they can be seen i also has contrast ct and my dentist could see it on panoramic they were blown away. Check out the Dr list on this site. Alot of people have gotten relief from surgery!
Yes, I bought a pill crusher and it was a piece of garbage. It was plastic and did not crush my pill. I'll look for a higher quality one elsewhere maybe. The pain is so bad right now and for the past week that surgery is seeming like a better and better option. But it can come and go, it's so weird. I have been thinking of switching my primary care provider. I don't feel she has been supportive at all of me through this journey so hearing that others have had better experiences is both disappointing and refreshing. Thanks for your advice and feedback. :)
I got mine at meijer it was 8.00 it kinda big it has groves all around top bottom that one works great i had cheeper one too it was crap till i got this one it great puts pills right to a powder. The Dr i saw ENT in North Carolina Dr.Gellispe check the Dr list see if you can get in see Dr soon!
If you have blender or nutra bullet try putting your meds in that make a smoothie!
Yes, I've been seeing an ENT - but want a second opinion. Just scheduled with someone I was recommended to see but his first appointment was in July! I'll have to figure something out for the pain until then. I'm definitely going to look for another pill crusher, also going to try blending them! Good ideas!
Don't think that just because you've not had a tonsillectomy or neck trauma it can't be ES- not everyone has that; doctors don't know all the causes. Sometimes it can be hereditary that your styloid processes are longer than average, and sometimes it seems to be caused by metabolic diseases. There isn't always compression of the blood vessels either. The pain with swallowing can be caused by the styloid processes pressing on the nerve involved with the swallowing process- the Glossopharyngeal Nerve.
It's not always the length of the styloid which causes the problems- the angle they're growing in can cause problems with which nerve it compresses, which could be why you have problems on one side more than the other.
Hope that you can find someone for a second opinion soon- although the symptoms, scans and the fact that the injection helped makes it seem likely that you have it! Quite often members have found the only way to work out which symptoms are ES or not are to have surgery!!
Okay, thank you for this information. It is comforting. I think I'm in denial because I am afraid of surgery but I'm also afraid to have no answers and no relief.
Jules said:
Don't think that just because you've not had a tonsillectomy or neck trauma it can't be ES- not everyone has that; doctors don't know all the causes. Sometimes it can be hereditary that your styloid processes are longer than average, and sometimes it seems to be caused by metabolic diseases. There isn't always compression of the blood vessels either. The pain with swallowing can be caused by the styloid processes pressing on the nerve involved with the swallowing process- the Glossopharyngeal Nerve.
It's not always the length of the styloid which causes the problems- the angle they're growing in can cause problems with which nerve it compresses, which could be why you have problems on one side more than the other.
Hope that you can find someone for a second opinion soon- although the symptoms, scans and the fact that the injection helped makes it seem likely that you have it! Quite often members have found the only way to work out which symptoms are ES or not are to have surgery!!
I am new to this site as well. My son has dysphasia and is now on a liquid diet consisting of an Ensure milkshake twice a day and a Hulk from Smoothie King at lunch while he is at work. I cannot imaging what you all are going through. I see what it is doing to him. He has pain in the right side of his neck but not while swallowing. When he does try to swallow something with substance, he does the “duck bob” and finally after trying a few times, gives up due to muscle fatigue in his neck/mouth muscles. He is so ready to find a specialist. I pray that you find help as well!! He has tooth pain, Ringing in the ears, cervical pain…Just praying!!
Did your son ever find a specialist to do his surgery? If not, have you checked the Doctor’s List under the HOME section above?
Will a ct scan without constrast diagnose ES?
Yes it will. Dr. Samji prefers a CT scan w/o contrast but other surgeons are fine w/ contrast. Having a CT w/ contrast can show compression of vascular tissues if your head is a position where the styloid or calicified ligament is compressing a vessel. Without contrast, the soft tissues (vessels) aren’t visible.