Hi my name is anita. Newly diagnosed and about to have intramural surgery on the 20/1 here in Australia. Although I posted that I have classic ES, I do have heart irregularities and gastro probs but we are not sure if that is connected yet?? I think it is but I guess we will know after the surgery if things improve there. Right now, I will be glad to try and get rid of the pain first and foremost. I have a number of questions, so please forgive me for asking so much so soon. Would anyone be able to help me understand if overwhelming fatigue is also a part of this. I will number them for ease of reading.
1.For the last year this has impacted my life terribly. I can’t find anywhere where it lists debilitating fatigue…it might be something else but I would really appreciate knowing if anyone else has this as part of there journey.
2. I am also short of breath a lot and experience what I call a restless body…you know the feeling when people say “oh someone just walked over my grave” and then you get a shiver that releases it? Well, mine doesn’t release and it is this constant uneasiness all over my body where I can’t keep my body still because it is so uncomfortable…nerve involvement?
3. Finally (for now…as I am sure I will more to ask…I did say forgive me ) would someone be able to tell me what to expect post operative with the surgery of introral? For example: the pain factor, how long does it last, how long before being able to eat properly etc.
Although I am grateful that I am getting surgery and have the hope that I will finally get some relief from this pain and I should just take the surgery however it comes… There is only myself and my daughter since my husband passed away two and half years ago and I just would like the heads up on what to expect so I can plan what I might need to do.
Again … My apologies for such a long post with so much in it but I am so thrilled to have found you guys and the possibility of not only not feeling so alone, but getting some information from people that actually have experienced the things I am about to head into.
Thank you in advance and lots of love and light to those helping others and to those still in pain.
I can attest to the fatigue. Absolutely, no question, it is NOT like normal long day fatigue. It is not depression. It is really heavy fatigue that doesn't get better with more sleep. It's the weirdest thing with that…at the worst of my symptoms, I would literally get 4 hours of awake time and sleep for 20. No exaggeration. I was excited to start my day with all kinds of things I wanted to do, and I'd crash hard in a grocery store or something, and just drive home and call it a day. I got nothing done and I wanted to do so much. I felt like I was sighing a lot, shuffling around as if I had drank a bunch of NyQuil or something. Brainfog and heavy eyes. All I wanted was to sleep hard for hours.
After some months, that improved, but sometimes I get a day like that, or I am only good for part of a day before feeling that way. I just had surgery (external), so I cannot yet say if that is done. I certainly hope it is!
The restlessness I don't seem to relate to. I had jittery nerves in my upper body like a fine electrical buzzing in my jaw, face, and arms. I have not felt this return post surgery.
Heart irregularities I DID have. Kind of sounds vagus to me with your gastro and heart stuff, but that's a guess and I think you're right…you'll know after surgery :)
Thanks for the reply Tee you have described the fatigue perfectly. I thought I was going crazy…I literally cannot get through the day. I’m a teacher and when I do make it to work, by the time I get home I literally fall into bed and have to stay there. I have been diagnosed with sleep apnea as well but this is far more than that…I literally cannot function and that compounded with the pain is not a great thing…but I know I’m not telling you anything you don’t know. It’s weird, and although I am sorry you have experienced it as we’ll, but somehow hearing that someone else knows what I am talking about gives me a sense of relief that perhaps I’m not going out of my mind. Thank you for taking the time to reply to me…it means a great deal. X
Hi Anita, I just get severe left sided jaw pain, pain in my gums and pain in the floor of my mouth. I do have fatigue but not sure whether to relate it to eagles. May I ask who your surgeon is and where he/she is located? I’m trying to find one in Melbourne. Thank you
Hi. I have an Ent and head and neck surgeon by the name of Dr. Andrew Salmon here on the Central Coast of NSW. He explained to me that this is notnancommon surgery and he has only performed approx 5-6 but although I haven’t had the surgery yet, I felt comfortable with his knowledge and the fact he was the first doctor that took notice of what I said and he recognised what I had in the first consultation. Of course the scans confirmed it but he had no doubt prior to me haing them which helped my confidence with him. A really nice guy (not just because he diagnosed me and has given me hope that I might be free from this pain and the symptoms I am living with) but because he is very easy to talk to and listens. I’m scared about the surgery but am placing my trust in him …so fingers crossed.
I had the same as you were saying. Mine seemed to be because my right carotid artery was squeezed almost totally shut. After having my styloids removed I did have a lot more energy. Also my GERD is gone!! There were so many nerves, veins, arteries, muscles and ligaments squeezed up tight. All of the pressure released after surgery. I didn't realized my stomach and intestinal tract were not functioning very well at all. But I sure see a difference now. Most of my symptoms went away within the first week. I think the GERD was gone within two weeks. Nobody understands how you feel with this unless you've had it. My muscles used to twitch a lot especially in my upper arms. I was always tired, too. Totally exhausted like it was too much effort to move or do anything. I used to half jokingly say, "I'm too tired to live anymore." It wasn't depression it all seemed just like too much effort. I usually tried to sleep around 10 - 12 hours a night but usually still felt tired when I woke up. Now I feel great! Surgery will make all of the difference.
I believe a lot of your symptoms are related to your ES. You don't sleep well so you are fatigued all the time. I also understand that "nerve" feeling you are speaking of......I had my surgery 11 months ago and I still have some issues with nerve involvement. My biggest problem after surgery was not drinking enough fluids. You have to breathe through your mouth at least part of the time and it dehydrates you very fast. Almost like a child after having their tonsils removed. Drink, drink, drink. It took me longer to get back to where I thought I should be so don't expect to bounce back tomorrow. Don't put that kind of pressure on yourself. Take your time and allow yourself to heal. I have had the pulsatile issue and I have been diagnosed with Reflux since all of this happened. My reflux is all in my throat so I attribute it to the ES also. My styloid was 2 1/2 inches long when they removed it so it had pushed my mouth and jaw over to the side so now I am trying to ease things back in place.
Please don't get me wrong! The recovery is not bad enough that I wouldn't do it again if I had too. That bone sticking me in the back of the throat almost drove me "crazy". It was always there and no one would listen. You now have someone listening to you and they are going to help you. Hang in there! It is better now. I just wish I understood how it happens and what other things in my body are betraying me. I probably don't really want to know. I will pray for a speedy uneventful recovery for you.
Hi Anita and Welcome! No apologies needed for long windedness on this sight, M'Dear. Most of us are. :) I am 5 years post operative and have formed a wonderful new normal for myself. I still have issues but my ES took 20 years to diagnose (which was a constant battle) so my issues post op are all entirely cool with me. They involve tendonitis, mostly, and occasional dizziness with odd referred pains here and there. I had debilitating fatigue before sugery and was diagnosed depressed once... took the meds for a month but became more exhausted from the manic highs it created so I stopped and refused to accept THAT diagnosis again. It is a different sort of fatigue; very specific and foggish rather than overexerted or depressed...
I was diagnosed with a heart murmur which went away after the surgery, apparently from the carotid artery pressure?? I am not entirely sure but just glad to have it resolved.
I agree to just take your time with recovery and not look at a specific time frame or expectation. My recovery was similar to having tonsils removed. And as happy1030 said, be sure to hydrate! If it hurts too much to swallow fluids (sip constantly) then popsicles and frozen cubes help. I froze some smoothie juice blends in small ice cube trays and just let them melt in my mouth. It felt good and gave me some nutrition as well. Also be sure to get a bunch of good nutrition in before your surgery since it will be hard to supplement up right after. My recovery from the two surgeries was about 10 days for each one. I was nursing a six month old baby at the time I had surgery so I understand your concerns and need to plan... but try to enlist the support of friends, if you can, and allow yourself plenty of time to recover. And as a teacher I'd also be aware that using your voice can be difficult for awhile. Mine changed post surgery. Not hugely but I acquired a bit more of a raspy quality that gave it more character... :) I am very chatty and overdid it at first so I just mention it here as a precaution. I got most of my communication out of the way before the second surgery so I could be more quiet right after.
I wish you a very speedy recovery and love and light as well!
Hi Kimmie sue and thank you for your reply. Apart from the GERD did you have chronic constipation as one of your symptoms? You said you noticed the intestinal/stomach issues have improved....what symptoms did you have that you have noticed have gone? I am having so much reflux at the moment and am hoping that will be gone after my surgery as well as all the other pain, heart irregularities, dizziness, fatigue....oh you know the drill...the list seems to be endless. I would be grateful to hear of the intestinal/stomach experience you had. Thank you again for your reply...it helps immensely. :)
kimmiesue said:
Anita,
I had the same as you were saying. Mine seemed to be because my right carotid artery was squeezed almost totally shut. After having my styloids removed I did have a lot more energy. Also my GERD is gone!! There were so many nerves, veins, arteries, muscles and ligaments squeezed up tight. All of the pressure released after surgery. I didn't realized my stomach and intestinal tract were not functioning very well at all. But I sure see a difference now. Most of my symptoms went away within the first week. I think the GERD was gone within two weeks. Nobody understands how you feel with this unless you've had it. My muscles used to twitch a lot especially in my upper arms. I was always tired, too. Totally exhausted like it was too much effort to move or do anything. I used to half jokingly say, "I'm too tired to live anymore." It wasn't depression it all seemed just like too much effort. I usually tried to sleep around 10 - 12 hours a night but usually still felt tired when I woke up. Now I feel great! Surgery will make all of the difference.
Hi Moxie...I really appreciate your advise re post operative....I tend to be a little impatient when it comes to recovery when ill. Its not that I am an impatient person...in fact the opposite...but being the only income earner now it is just myself and my daughter, the stress of paying bills and being able to teach to do so tends to make me push a little hard....so I will take your advise and learn to be patient and give myself time to heal. I am already underweight because of this damn disorder so I will also take your advise to 'beef' up a little in the next week before surgery as it sure sounds like I am going to need some nutrition reserves. I have begun making the smoothy icecubes in preparation for coming home from the surgery...so yay you for mentioning that. XXXXX
moxie said:
Hi Anita and Welcome! No apologies needed for long windedness on this sight, M'Dear. Most of us are. :) I am 5 years post operative and have formed a wonderful new normal for myself. I still have issues but my ES took 20 years to diagnose (which was a constant battle) so my issues post op are all entirely cool with me. They involve tendonitis, mostly, and occasional dizziness with odd referred pains here and there. I had debilitating fatigue before sugery and was diagnosed depressed once... took the meds for a month but became more exhausted from the manic highs it created so I stopped and refused to accept THAT diagnosis again. It is a different sort of fatigue; very specific and foggish rather than overexerted or depressed...
I was diagnosed with a heart murmur which went away after the surgery, apparently from the carotid artery pressure?? I am not entirely sure but just glad to have it resolved.
I agree to just take your time with recovery and not look at a specific time frame or expectation. My recovery was similar to having tonsils removed. And as happy1030 said, be sure to hydrate! If it hurts too much to swallow fluids (sip constantly) then popsicles and frozen cubes help. I froze some smoothie juice blends in small ice cube trays and just let them melt in my mouth. It felt good and gave me some nutrition as well. Also be sure to get a bunch of good nutrition in before your surgery since it will be hard to supplement up right after. My recovery from the two surgeries was about 10 days for each one. I was nursing a six month old baby at the time I had surgery so I understand your concerns and need to plan... but try to enlist the support of friends, if you can, and allow yourself plenty of time to recover. And as a teacher I'd also be aware that using your voice can be difficult for awhile. Mine changed post surgery. Not hugely but I acquired a bit more of a raspy quality that gave it more character... :) I am very chatty and overdid it at first so I just mention it here as a precaution. I got most of my communication out of the way before the second surgery so I could be more quiet right after.
I wish you a very speedy recovery and love and light as well!
Your scientific view is more than welcome....it puts things into a logical perspective and somehow tends to take some of the anxiety away and is replaced by hope that I may indeed be free of some of these things (hoping all actually but will settle for some to be able to function again) and become more of the 'old' me that seems to be a very distant memory of the past. Bless you for replying. XX
Glitter Paws said:
Welcome Anita!! There is a stream of nerves in your neck (sympathetic nerves) that play a role in the autonomic nervous system and this system is in charge of digestion, heart rate, fight or flight, etc. So your GI issues, heart palpitations, and shiver/ restless sensation can be from a stimulated sympathetic nervous system. Many ES patients have this nervous system stimulated due to: physical contact to these nerves from the styloid/calcified ligament or the chronic pain itself (because pain stimulates the sympathetic nervous system). Chronic pain is such an awful thing...our bodies weren't designed to go through pain day in and day out, which is why fatigue sets in. :-( We are exhausted!! I hope this helps to look at it from this scientific view...has certainly helped me. God speed Anita!!
Hi Happy1030...I can't tell you how relieved I am to hear that you can relate to the restless body situation....I thought I was going crazy....I am sooooo hoping it will go away after the surgery....It has only manifested in the last few weeks and is really hard to deal with....it seems to make all the other stuff feel so much worse as it is happening. I will take your advise and be very aware about making sure I get fluids into me....regardless of how hard it is. Thank you for your reply. XX
Happy1030 said:
I believe a lot of your symptoms are related to your ES. You don't sleep well so you are fatigued all the time. I also understand that "nerve" feeling you are speaking of......I had my surgery 11 months ago and I still have some issues with nerve involvement. My biggest problem after surgery was not drinking enough fluids. You have to breathe through your mouth at least part of the time and it dehydrates you very fast. Almost like a child after having their tonsils removed. Drink, drink, drink. It took me longer to get back to where I thought I should be so don't expect to bounce back tomorrow. Don't put that kind of pressure on yourself. Take your time and allow yourself to heal. I have had the pulsatile issue and I have been diagnosed with Reflux since all of this happened. My reflux is all in my throat so I attribute it to the ES also. My styloid was 2 1/2 inches long when they removed it so it had pushed my mouth and jaw over to the side so now I am trying to ease things back in place.
Please don't get me wrong! The recovery is not bad enough that I wouldn't do it again if I had too. That bone sticking me in the back of the throat almost drove me "crazy". It was always there and no one would listen. You now have someone listening to you and they are going to help you. Hang in there! It is better now. I just wish I understood how it happens and what other things in my body are betraying me. I probably don't really want to know. I will pray for a speedy uneventful recovery for you.
Welcome to the eagle syndrome support group. I've been reading the other posts in response to what you wrote. You're getting some good advice and support. I had my left styloid removed 2x. Yes thats correct. It grew back. Each surgery was done through my mouth. I think you will do well after the surgery. I did pretty good after both of mine. Never had tonsils out, but I would say this is close to what that might feel like. The gargling helps. For me I could handle the soreness when I swallowed. I do remember thinking the first day that I was thankful I didn't do both sides at once. Also my second surgery my nasal canal was totally plugged and I couldn't sleep because I could only breath through my mouth. Remember, this was my second surgery. It didn't happen the first time. Just in case: Buy some nasal strips and have handy. I didn't need them during the day. At night I put one on and it cleared my nose so I could breath freely. What a lifesaver for me. My motto is be prepared! I hope this helps you and your surgery goes incredibly well. Bless you.
Chronic fatigue was debilitating to me. Even blinking my eyes would ache and feel tired. I had my left styloid taking out, my left side of body feels calm but right side still has styloid, has my right side of body aggravated very easy.
Welcome Anew me, Just to let you know, a doctor who has done 5 or 6 surgeries is pretty experienced in our life. My ENT had Eagles and it is the only reason he knew about it. He had surgery done by his partner, and I was only his second ES patient to have surgery. I am doing well as far as the Eagles goes, so praise for each step in the right direction.
Everyone has given you good advice, be patient, you may feel a lot better in some ways after surgery, but you may get other scary pains for awhile. You will probably feel much better in 4-6 weeks, and hopefully have a lot of your energy back, but you will probably find that even into 8 or 9 months you will gradually notice that more and more symptoms fade away. At least, that is what I hope for you. I am glad you found a doctor in Australia, I will be posting him on my next spreadsheet of doctors. Yeah!
Thank you…what a great idea. I never would have given that one thought about the nasal strips. I’m going to get some for after the surgeryp for sure. Xxx
sunshinesbright said:
Welcome to the eagle syndrome support group. I’ve been reading the other posts in response to what you wrote. You’re getting some good advice and support. I had my left styloid removed 2x. Yes thats correct. It grew back. Each surgery was done through my mouth. I think you will do well after the surgery. I did pretty good after both of mine. Never had tonsils out, but I would say this is close to what that might feel like. The gargling helps. For me I could handle the soreness when I swallowed. I do remember thinking the first day that I was thankful I didn’t do both sides at once. Also my second surgery my nasal canal was totally plugged and I couldn’t sleep because I could only breath through my mouth. Remember, this was my second surgery. It didn’t happen the first time. Just in case: Buy some nasal strips and have handy. I didn’t need them during the day. At night I put one on and it cleared my nose so I could breath freely. What a lifesaver for me. My motto is be prepared! I hope this helps you and your surgery goes incredibly well. Bless you.
I’m having my left styloid removed but the scans showed both need to be done. The right one doesn’t give me as much grief… Yet, although it is definitely starting to rear it’s ugly head. I’m getting a lot of facial spasms on the right side as well as the too familiar ear pain. First things first, I will tackle the left and move through that and if all goes well I will head back before it gets too bad. My surgeon said he thinks it will need to be done pretty soon but like I said, one thing at a time this time around. X
Amy said:
Chronic fatigue was debilitating to me. Even blinking my eyes would ache and feel tired. I had my left styloid taking out, my left side of body feels calm but right side still has styloid, has my right side of body aggravated very easy.
Yes after reading the posts and doing my research so far, it would seem I have someone that has quite a bit of experience compared to others. I’m so grateful. I felt confident with him from the get go…still nervous about the surgery of course, but my confidence grew with each consultation. He diagnosed me on the first consultation with Eagle syndrome and the scans were confirmation of it…so after all the doctors that have sent me for a plethora of testing and no counting the ones that dismissed me immediately as being a neurotic hypochondriac…her eis this one man that went yep, I know what is it that is causing you to have your life upside down…I know things can go wrong during surgery and I am terrified I will admit…but if they do go wrong, it won’t be because I am in the care of someone that does not know what he is doing…which brings me peace. Xx
emma said:
Welcome Anew me, Just to let you know, a doctor who has done 5 or 6 surgeries is pretty experienced in our life. My ENT had Eagles and it is the only reason he knew about it. He had surgery done by his partner, and I was only his second ES patient to have surgery. I am doing well as far as the Eagles goes, so praise for each step in the right direction.
Everyone has given you good advice, be patient, you may feel a lot better in some ways after surgery, but you may get other scary pains for awhile. You will probably feel much better in 4-6 weeks, and hopefully have a lot of your energy back, but you will probably find that even into 8 or 9 months you will gradually notice that more and more symptoms fade away. At least, that is what I hope for you. I am glad you found a doctor in Australia, I will be posting him on my next spreadsheet of doctors. Yeah!
) would someone be able to tell me what to expect post operative with the surgery of introral? For example: the pain factor, how long does it last, how long before being able to eat properly etc.