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Eagle Syndrome - Online Support Group

Steps back and not handling it well


#1

I have a lot on my heart and need to get it out. After my surgery for 2 months I had some symptoms disappear. I did not realize it the first month because I was still in a lot of pain from the surgery and not sleeping well. The first thing I noticed was gone was my fatigue. I have had horrible fatigue for almost 4 years. It is not the kind of fatigue that makes you sleep all the time it is more like weakness. I would get tired putting the leash on the dog or walking up stairs. After surgery it was gone and it was amazing. Tied to the fatigue was the brain fog. I have felt like I couldn’t think straight most of the time like there was this huge weight on my brain. I also noticed I wasn’t as clumsy. I tend to drop things a lot, that stopped after surgery. What was most exciting is around 6wks I noticed my voice became stronger and I had some resonance back in my voice that I had not had for a long time. I actually had hope for the first time that I would be able to sing again and be able to function again like a normal human. I visited family and was not tired and could do stuff it was amazing. Then towards the 3rd month. It all came back. The fatigue came back. I had pain when trying to lay down. My voice got weaker. I feel like I can’t think straight. At first I thought maybe it was just a flare up, but I am now going on 3 wks of feeling horrible and fatigued everyday. I am not handling it well because I did not realize how horrible I felt till it was gone for a few months. I have tried to tell myself I am still healing and it will go away but from everything I have read on recovery, It doesn’t make sense. A couple days of fatigue or pain would make sense but not constant. It would be more accurate to say that the surgery only helped a few things and that for some strange reason I had a few months pain/fatigue free. I am overwhelmed because before surgery I was to the point where I could not take it anymore and now having it come back I am crushed. On top of things due to my husbands job situation we are loosing our insurance so I cannot pursue anything health wise until that is resolved.


#2

I am so sorry to hear this and will be praying for you. I have similar symptoms as you on top of other symptoms. My surgery is next Monday. A few of questions: Did the Dr remove the entire styloid process and/or ligament? Was your Eagle syndrome bilateral? Who did your surgery? People who have not suffered with this have no clue what it’s like. That includes most doctors. Most doctors havn’t heard of it or may only remember hearing about it in medical school. Good luck to you. I pray that your medical insurance get worked out so you can get some help. God bless.


#3

eaglesnest, good luck on your surgery I will be praying for you. He removed most of the styloid and took out the ligament, it was calcified. He said the other side was almost as long as the one we took out but it was not as thick. He didn’t seem to think that I would need to take the other one out unless I started to have symptoms on that side of the neck.


#4

I’m so sorry that you were feeling so much better & now have gob=ne backwards, it’s not surprising that you’re feeling bad about this. I think that ES symptoms can creep up gradually over time, like you said you hadn’t realised how bad you’d got.
All I can suggest is that maybe the second side is playing up- it very oten does seem to get worse after one surgery. Whether that’s because everything in the neck shifts position a bit, whether swelling after surgery makes things worse, or whether it’s just that the first side was masking the problems with the second side, who know, but it is common! Some of the symptoms you describe sound like they could be vascular, so I think until you have that side removed you can’t tell (unless you had a CT with contrast done which might show any vascular issues). There could also be still some symptoms left on the side you’ve had removed if it was compressing blood vessels & they haven’t sprung back properly- having the second side done would hopefully help enough to make life more comfortable. (I still have a bit of a problem with one side as it hasn’t totally sprung back, I was offered stenting to fully open the vein but decided against it as there are drawbacks. Once I’d had the second side done, almost all the vascular symptoms went, but I didn’t totally feel the benefit until both sides were done).
So I know this perhaps isn’t what you want to hear, but I would try to keep your spirits up by thinking that after another surgery you’ll get that pain & fatigue free life again. And I hope that you can get the insurance situation soon so can look into more treatment.
Thinking of you & praying that you can keep strong, sending you a hug :hugs:


#5

Thank you so much for the encouragement. It was needed. Jules I am afraid you might be right about my other side. I was really hoping one side was all that I needed. Dr. didn’t mention my other side at all till I asked him about it after surgery. He said that if it started acting up I might need surgery. I was hoping he would say my left side looked fine. I think I will probably look into getting another CT after I get insurance. I thought my last CT had contrast but I am not sure. But in that CT they were looking for lymph nodes and probably overlooked everything. I will try and stay positive. Maybe I will get lucky and some of the blood vessels just need more time. Would a problem with the artery show up on an ultrasound or only a CT? Also I was wondering if a styloid on one side could cause problems and pain on the other? Maybe some of my issues on my right side are caused by my left styloid?? This all started when the top of my head got hit and jammed my head down. It was the left side that got hit but all my symptoms came on the right. ES is horrible but I am glad I have this website.


#6

Some people have had ultrasounds which have showed compression in the blood vessels; sometimes either CT or ultrasounds have to be done in the position you get most symptoms from to show anything.
It’s hard to say about whether pain & problems could be caused by a styloid process on the opposite side- logic would say no, but it’s such a weird thing, sometimes there’s no rhyme or reason…


#7

Agirl,

There is no way to tell which symptoms are being caused by which side in a bilateral ES situation until 1 styloid is removed. I believe what you’re feeling now is coming from your remaining styloid. I’ve counseled several people on this forum who’ve had bilateral ES & felt their first surgery was a complete flop because their symptoms only went away temporarily. I’ve encouraged them to pursue the second surgery because that doggone second elongated styloid/calcified ligament is still in there doing its dirty work. It’s possible that, as Jules said, once one styloid is removed things shift around a bit & the remaining styloid/ligament become more relevant from a pain/symptoms standpoint.

Getting another scan wouldn’t be necessary if your remaining styloid/ligament are visible on the CT scan you’ve already had unless you want it done w/ contrast to check for vascular compression. Nerve compression/involvement is very difficult to see & thus is easier to diagnose based on symptoms.

I, too, will pray for your health insurance situation to get sorted out. I feel certain that if you have your second styloid/ligament removed, you’ll feel MUCH better. I base this on my own experience as well.

Be encouraged. We’re always here for you!

:sunflower: :blush:


#8

Thank you Isaiah. The Dr never said I had bilateral ES. He never mentioned my other styloid till I asked and he said it was the same size as the other but not as thick. He did not seemed concerned about it but has set up a follow up with me because he wanted to make sure I was feeling ok. I feel that he was so vague(not wanting to push me into anything) that I have no idea if he thinks I should have the second taken out. I would feel more confident about a second surgery if the Dr. felt strongly that it should come out. I was able to work more with the 3D Ct and have a picture I will attach below. It is before my surgery. I had surgery on the right styloid and it is gone now. The pic is looking at my face with my jaw off so the left is on the right.
ES


#9

Interesting. I looks to me like your left side is longer than your right & that your ligament might be calcified as well (see dotted line that runs from your C-2 vertebra past the tip of your styloid process). The fact that your left side isn’t as thick as your right will have nothing to do w/ whether or not it causes symptoms. What makes the difference is whether or not it is tangling w/ your cranial nerves or vascular tissues. Those cannot be seen in a CT scan but your symptoms say to me that they are being infringed upon by this remaining styloid. There is no way, short of having the second one removed to know for sure, but if it was me, & based on the good temporary results you had after your first surgery, I would pursue a second one.

I commented in another post that even one of the more experienced ES surgeons used by ppl on this forum doesn’t “get it” that recurrence of symptoms in bilateral cases where only 1 styloid has been removed doesn’t mean the first surgery failed. It means, as I previously said, the second elongated styloid is still present & most likely causing the symptoms. If you get to a point where you don’t want to live w/ your current symptoms & want your life back, pushing for a second surgery may be your best bet.

I need to amend something I said in my previous post: I believe nerves can be seen in MRI scans & perhaps better if contrast is used. CT scans are fancy x-rays so show our hard body tissues better. Some soft tissues are visible in a CT when contrast is added to the mix.

I will pray for you to have wisdom as to how to proceed.


#10

Hi Jules, How can you tell whether the blood vessels have sprung back or not?


#11

Just that once everything has settled down after the op, if you’re still getting vascular symptoms, but really you’d need both sides done to be totally sure. I still get the occasional symptoms- stress definitely makes things a little worse, heat & exercise a bit, flying was the worst thing. For me it’s definitely not worth the risks of the op, I get it so rarely!


#12

Did your consultant check anything to do with your blood vessels?