Surgery questions

Hello my fellow eaglets! (does anyone find that offensive? I'm trying to be light hearted)

I was diagnosed w ES about 6 weeks ago, and my ENT put me on anti inflammatories for a month. Sadly, it didn't help at all. I met with him again this morning and I'm afraid surgery is my only option.

I'm really wrestling with what to do. I am in pain, but not so much that I can't work or live my life. I have other medical conditions that require me to be on pain meds daily, and the ES pain cuts through that, which is scary to think how much pain I'd be in without them. I am a recruiter by profession and that requires me to be on the phone a large portion of my workday. I'm finding that to be challenging.

I'm wondering how long people were out of work post surgery (I work from home, so suspect I can be up and running faster than those who work in an office, since I can work in my jammies if needed). I'm just wondering how much of my life is going to be impacted and for how long. My doc thinks it will be a small incision (an inch or so) and he's going to try to put it in a natural bend in the skin on my neck.

I'm nervous and rambling. I think it's the fact that I have a choice. The only other surgery I've ever had was to repair a broken foot, so I didn't have time to think about it, it was a given.

Any advice or support would be awesome!

My best to all,

Stephanie

Charleston, SC

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Hi MiniFury, I've had 5 Eagles surgeries and was out of work for 2 weeks after 4 of them. If I worked at home, I think I could have pretty easily gone back after a week. I was out for several months after the other surgery because the surgery damaged some nerves that went down my body and I had quite a hard time recovering from that one. But if I was working from home, I think I could have gone back much sooner.

There have been a couple people that have posted almost day to day progress of their recoveries and I think that would be real helpful for you. I think there are links in the ES Information tab.

If your pain isn't that bad yet, you could probably wait until it gets worse to have your surgery if you would feel more comfortable with that. That would be something you could discuss with your doctor. Good luck! Keep us posted.

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MiniFury,

I had external surgery in November and my recovery was very easy. The bigger issue is how much stamina you have. I could have probably gone back after a few days but for practical reasons it’s best to wait. You turn your head gingerly for a few days so I don’t recommend driving for about 5 days. You also get tired because your body is putting a lot of effort into healing.

Luckily, vanity was not an issue for me. I just didn’t shave for awhile and my beard covered up the 4" incision and the swelling.

One more thing about being tired. Sleeping is difficult. It’s best to sleep sitting up the first two nights. Sleeping on my affected side(which is how I sleep 80% of the time) was out of the question for at least a week or more.

Good luck. The surgery will be worth a few days of discomfort.

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Hi! I had external surgery too, and found it wasn't as bad as I expected. I found chewing and swallowing were uncomfortable for a week. I found too that my neck was quite uncomfortable turning it to one side, maybe I'm more of a wimp, but I didn't feel happy driving for nearly 3 weeks. If you work from home a lot then that might not be a problem for you! I do a lot of lifting with my work (voluntary work), so took 3 weeks off that, and will take at least that off again for my second surgery, as lifting anything heavy was the worse thing to set pain off again.

As with any surgery, there are risks, and your doctor will talk that over with you, but I felt so grim from vascular symptoms that it was a no-brainer for me. It can be a difficult choice- my right side that I'm waiting to have surgery for is not as bad as the one I've had done, but I feel that the other side was left too long, and has possibly done some permanent damage, as I still have nerve pain. So I want to have the remaining styloid out before perhaps the same thing happens. I know what you mean about having a choice, but at the end of the day if you've not found anything to help, and it isn't going to go away, then it's not really a choice.... not so much if, but when! Good luck!

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Thanks everyone. I’m about 12 days from surgery and starting to focus more on the experience and preparation. I’m also having trouble sleeping from worrying about things, but I’m a worrier, so nothing new there. :slight_smile:

I’ll be reading others experience on what to buy, eat, etc. I’m so glad I have access to other who have advice!
My best to all,

Stephanie

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Good luck Stephanie! Sending you good wishes. Please keep us posted on how your surgery goes and how you’re doing.

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It’s May 31st, isn’t it- not too long away! My second surgery is re-scheduled for 1st June, so if it goes ahead (I’m in the UK, so it could get cancelled again!) I’ll be having mine the same time. Thinking of you!

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It is! I hope you don’t get rescheduled. I know ES is not as life
threatening as other diseases, but if you’re as uncomfortable as I am, you need to get this done! Are you having internal or external? Mine is external which seems to heal faster with less complications. I’m anxious about this, but know I need the surgery, I don’t want to live like this.

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Hi, I hope your operations went well, Jules and MiniFury. I have an ENT telling me that the reason I’m losing feeling in my tongue is that a calcified stylus is lying athwart the hyperglossal nerve, and he wants to operate. But I’m not sure, assuming he’s right, about the recovery from the operation. So I’m asking you: Did your neck get sliced? Punctured? Did you need stitches? How long were you bandaged? Could you sleep? In short, how hard has the recovery been? And of course, was it worth it?
thanks
Manx

Hi Manx!
Yes, my op’s gone very well thanks- I had the first side done a year ago, and I think both surgeries went well, far easier than I expected, and this one was easier than the first. You will need to ask your doctor specific questions, as different doctors have different methods. My doctor goes in behind the ear, and just down into the neck but following the crease so it barely show, I suppose the wound’s just over 2" long. I had dissolvable stitches. The doc I saw is a skull base surgeon, so is used to operating in that area, I have seen some members’ pics where they’ve had a more obvious surgery wound across the neck, so it’s something to ask. I had a pressure bandage and a drip overnight- looked really alarming as they bandaged my whole head up, but I don’t think that’s commonly done! I stayed in one night because they put in a drip, but a lot of docs don’t do that and people can go home the same day. I had a really small dressing over the wound, but hubby took that off after a couple of days and it was fine. Once it’s healed it’s a good idea to rub some oil into it to soften it all; I still do that with the side I had done a year ago as it still seems to tighten and get uncomfortable- you can get oils specially for scars etc., Bio-oil or something like that.
Sleeping has been a bit tricky, as it can be difficult to get comfy. Like MiniFury said, a wedge pillow will keep you semi-upright and help reduce swelling, and an orthopaedic/ V shaped pillow will help so the pillow’s not pressing into the side of your neck- I’ve had to sleep like that for a couple of years now anyway, because of the symptoms from ES.
Recovery-wise, it’s best to take things easy, not to lift anything, just be sensible really. I’ve found my neck’s uncomfortable to turn, I haven’t driven yet, but I think other’s have not had that problem. I’m sure if I really had to I could! Most people have had at least a couple of week off work- I do lifting, and it’s voluntary work anyway, so I’m planning to have four weeks away to make sure I’m completely better! The worst thing for me first time was chewing, and opening my mouth far was painful, so I had lots of smoothies etc., but that’s not been a problem this time, I could eat pretty much normally right from the start.
Certainly for me it’s been well worth it. I had some scary vascular symptoms, and they’re massively better. When I look back to how ill I felt, I’m over the moon at how I feel now. But I also had Trigeminal nerve pain, and that hasn’t gone completely. It is gradually improving though, and I have some days where I don’t have it at all. It’s taken a year to improve though, so you might have to be patient- I presume that you get GPN pain?
At the end of the day surgery has risks, but there is no ‘cure’ for ES other than surgery, so it’s an individual decision based on how much pain you’re in and how your life’s being affected.
There’s lots of detailed posts about recovery, just search for recovery after surgery and you’ll find a few if you want to read about others’ experiences, but here’s a couple of links to get you started!
Bilateral Eagle Syndrome Extraoral Surgery #1 of 2: My day 1 experience/post-op recovery/tips, Bilateral Eagle Syndrome Extraoral Surgery #1 of 2: 30 DAY POST-OP UPDATE/Surgery #2 of 2 prep
There is info in the newbies section- ES Info, but the links are to the previous website; I’m in the process of updating it all so should be done soon! hope this essay helps- sorry it’s a bit long!!

Forgot to say- the most important thing is to check that your ENT will take off as much of the styloid process as they safely can- some docs just shorten it a little and that might not be enough to help!

Hi Manx,
I’ve had bilateral external ES surgery. My neck was sliced on both sides (9 months apart) but my surgeon cut in my natural neck creases so unless you know there’s a scar on each side, they basically can’t be seen now. As with Jules, I had dissolving sutures & my first side was more painful and took longer to heal but it was also the side which required a longer surgery. Unlike Jules, my surgeries were both outpatient and I went home w/ a reasonably small pressure bandage in place which when removed after a day or two revealed steri-strips which held the incision together. My first surgery was more complicated because my hypoglossal nerve was in the way & moving it out of the way caused the right half of my tongue to be mostly paralyzed for about 6 months. Happily it has recovered. I found that it took about 2 months to feel pretty much normal after each surgery. That said, it took about 2 weeks post op before I could resume most of my activities. The biggest key to recovery is PATIENCE. Don’t overdo just because your body is feeling good. Remember that ES surgery is major surgery, and it will take time for your body to heal. I set myself back by trying to do too much too soon because I was feeling “fine”. I’m not a “sitter”, I’m a “do-er” so taking it easy was tough.

In spite of the tongue issue, I highly recommend surgery if you have access to a surgeon in whom you have confidence. It has vastly improved my life.

:slight_smile:

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Thanks very much for your responses, Jules and Isiah. It’s wonderful there are people to talk to about this, as I guess everyone on the list knows.
It seems, from what you wrote, that the consequences of an operation are reasonably serious. The Phoenix surgeon who suggested I have it seemed like a good guy, but he never examined me, only looked at the MRI (or maybe the CAT, can’t remember) and went from there. My problem with that is when I first experienced my tongue (hyperglossal nerve) going dead, two technicians separately decided from the images that I had throat cancer. Fortunately, a biopsy and PET scan showed I didn’t. But the surgeon’s deciding I have ES from the same info that previous techicians said I had cancer. So I made an appointment at the Mayo Clinic in Minnesota for next Friday; it’s a long way from my home in Albuquerque but maybe they can determine whether this is or ain’t Eagle.
Thanks again for you discussion of your own operations; it was a big help to me.

Manx, the mayo clinic has turned away Eagles patients in the past and refused to treat it. It’s not the best place to find out about Eagles - they don’t know that much about it. If you’re going to travel, you’d be better off going to one of the experienced Eagles doctors. Is the doctor you saw in Phoenix by any chance the one on the doctors list Dr. Milligan? He’s supposed to be pretty good. And most often the experienced Eagles doctors evaluate for Eagles by looking at the scan for the styloids.

It’s kind of strange, but it seems that sometimes the “best” medical centers often don’t know much about Eagles. I went to the Cleveland Clinic when I had vascular eagles and they didn’t know much about eagles at all and put me through all kinds of tests and still didn’t acknowledge that my symptoms could come from Eagles. Luckily, I still convinced one of the surgeons there to operate, but with hindsight, I wish I’d gone to one of the doctors that has a lot of Eagles experience.

thanks, Heidi. Thanks for the tip about Mayo. The doctor I mentioned in Phoenix is indeed Dr. Milligan. He seems trustworthy, but a dedicated ENT and a neurologist in Abq advised me to avoid having the operation; it didn’t help when two leading May ENTs thought that my symptom – the left side of my tongue going dead – didn’t match known Eagle symptoms and also advised, via email, without seeing me, that it might be something else causing the problem. A friend of mine who works at Mayo seems to have leaned on them to actually set up an appointment for a Dr. Ekbom to see me next Friday; he’s apparently signed up a neurologist. I thought maybe they could tell if the nerve impulse is actually blocked when the calcified stylus crosses the hyperglossal nerve. If you have any further thoughts, I’m open to them. My problem is troubling and apparently progressing but the idea of weeks of discomfort and healing makes me hesitate; I do exercises which require a great deal of movement and keep me otherwise healthy. I hate the idea of having to stop. (Embarassing to lay this all out.)
thanks again for your interest.

Manx,
I went to Mayo in MN a few years and it was a huge waste of my time, their time, and not to mention $$. They didn’t believe my symptoms were consistent with ES so they sent me back home with Dr. appts to a neurologist who then confirmed all symptoms were from ES. So then Mayo just wanted to send me to a pain management clinic instead of trying to fix the problem. So I recently started looking for different drs. and trying to get the surgery. Im terrified of the surgery hence the reason why Ive suffered for as long as I have. BUt I know I can’t live this way so Its time to suck it up and get the surgery. Best of luck to you.

A lot of us have had symptoms that the doctors tell us aren’t associated with Eagles, but that turned out to be. I know a burning tongue can absolutely be associated with Eagles, so I wouldn’t be surprised at all that a numb tongue could be associated with it, especially if a doctor familiar with Eagles saw a styloid near that nerve. But if you feel more comfortable pursuing different opinions, then you should do that. Do you know how long your calcified styloid is?

Thanks for the info about the tongue. Mine slightly burns, besides being uncooperative. Re the length of the calcified stylus, I have no idea. The radiologist who looked at the image told the ENT it might be ES; Dr. Milligan looked at the image and said I might be well advised to think about an operation to remove the lower part of the stylus. That’s all I know. And, as I mentioned, previous interpretations of cancer, based on the same dat,a were incorrect. I wasn’t left with much confidence in a diagnosis strictly based on an image. So I think I’ll go to Mayo, since it’s all set up, and hear what they have to say. Maybe it’s something else, not ES. Maybe it’s all in my mind. Getting better all the time. But all the doctors agree something’s wrong. Anyway, thanks for your thoughts, I value everything I’ve read from the group…

hi kcannady, I share your terror, or at least, I’m resentful of the idea of voluntarily letting someone cut into my neck. I’ve read that there was a successful cased of a chiropractic approach that freed up someone with the ES condition; I’m going to have to chase that down. Maybe you’ve heard of it?
I wanted this to be part of the general conversation, but I think I’ve privatised it. anyway regards, I hope you do the right thing for you.

I haven’t seen a case about a chiropractor having success, but to be fair I’ve not looked far into that one. One of our members- Gods Blessing- has found it really helpful though. It’s something to be really careful with, as if a chiropractor doesn’t know what they’re doing with ES, I would imagine that an elongated styloid could easily get fractured if they did much traction and manipulation.