This patient is only 24 years old. With the way the pics look I am not sure he even knows what “normal” is because it sure looks like this is something that has been going on for awhile.
Khalil5oo, you can get your life back. It is just going to be a journey to do it. You at least now know the problem. I looked at your surrounding states and there is one from Minnesota that looks promising for a consultation depending on driving distance to you. You might call them and see if they do video visits. Your surgery is likely going to have to take an insurance exception if the insurance you are getting only allows in network wisconsin Doctors. This means you have to prove you need medical help and none of their “approved” providers can provide it.
•Dr. William Omlie, Surgical Consultants, 6405 France Ave S Ste W440, Edina, MN (952) 927-7004, Dr. William Omlie, MD, General Surgeon - Minneapolis, MN | Sharecare Dr. William Omlie works with his nephew, Dr. James Omlie, Maxillofacial Surgeon. They do the ES surgeries together. James is the expert of the skull base area & William is the expert of the jugular & arteries (vascular) areas."
Unfortunately, Dr. Omlie & his nephew stopped doing ES surgeries a couple of years ago. It was unclear to us whether this was a permanent or temporary situation so we haven’t taken them off the Doctors List. It’s worthwhile contacting them @Khalil5oo, but you may hear they aren’t working with ES patients anymore.
Also, I think the info on the report re: 13 mm of calcification got misinterpreted as 13 cm by some of us (me included). 13 mm is only 1.3 cm which is a cm less than the normal length of the styloid itself so isn’t as crazy long as it seems when one reads “13”.
I agree that it appears the tips of the calcification on both sides reach just to the top of C3 which is unusual. Khalil, do you have a long neck? People with longer necks can have longer styloids. Shorter necked people can have shorter “elongated” styloids that cause all the same problems as those of longer styloids in longer-necked people. Does that make sense?
I still can’t make sense of the report. He appears to have a long calcification on the left side. That surely is more than 13 mm. Do you see anything in the report that jives with the length of that calcification?
I am going with what my eyeballs see. He has a problem.
Excellent. He can give you an idea of what you are dealing with. I just saw where he ordered imaging on another patient. He can help direct you on how to proceed.
When you are feeling down just remember there are those out there with this Syndrome that are in countries where they don’t seem to have anyone to help. At least you have got a starting place.
The 13 mm is reportedly the length of the calcified section of ligament that is separate from the styloid on the right side. The left side is one long section of calcification whereas the right side is in two segments.
Hey guys I been really struggling lately. My mind seems to get more “spacier” if that’s the word. I also been noticing my left ear thumping like crazy almost like someone is playing loud music like a bass in certain positions I think. I did stop smoking thc a couple months ago I drink here and there still. I should be able to make appointments the 1st of December. I can’t really describe how I feel. It’s like I feel weak and unsteady at times hard to explain. I try to stay calm which helps a bit of course.
So sorry that you’re feeling so weird! I don’t know if it affects you, but I did used to find that alcohol really increased my head pressure- even after 8 years out from surgery I don’t drink any alcohol, it’s too similar a feeling and reminds me of how rough I felt…but you’re young & it’s a rubbish place to be in for you feeling so ill, so I understand you probably need to have some fun!
Let us know how you get on setting up appointments, & hope that things settle down soon for you; ES can come in waves/ flares so hopefully it’ll ease a bit for you
Hey guys does ES cause symptoms like air hunger I been having it come and go. Also a strangled feeling in the neck especially I think after some physical lifting??
It can cause air hunger & a strangled feeling. I had the air hunger feeling after doing rope slamming at the gym before I had ES surgery. It was bad enough I felt like I was going to pass out. My heart would race & my blood pressure would drop. It was scary. It seemed like anything I did that caused me to use my neck muscles hard would cause that reaction (in your case it’s the weight lifting). I think it’s caused by an irritated vagus nerve since the vagus innervates, lungs & heart & has some effect on BP, too. The strangulation feeling can be vagus or glossopharyngeal nerves.
That makes sense excercise can help sometimes. I sent my cd to dr. Cognetti. The office said they should call me back once they receive it. Dr cognetti is probabaly gonna look at it!
@Khalil5oo - If you don’t get a call back in a reasonable amount of time, say two weeks, give the office a call & ask for an update as to when you can expect to hear something.
Any of y’all experienced spasms on the left side of your head and when it happens you can almost hear a whooshing thunder like sound for a second?? I called today they said they’re gonna and give me a call back asap.
I hope the call back comes this week. I’m glad you followed up, @Khalil5oo.
I haven’t heard of anyone having the head spasm or whooshing thunder like sound with it, but we’re each unique in how ES affects us even though there are some symptoms that are more common than others.
