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Eagle Syndrome - Online Support Group

Day 18 post surgery

#41

Thanks sjlash, I have been blessed with the way it has healed up. Haven’t been applying anything onto it since its so recent and honestly still numb, so kind of uncomfortable to touch it.

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#42

Hi mariposa85 -

In the last 2 months I started taking Diamox in addition to Triamterene to help control Meniere’s Disease flare-ups. I had an immediate reaction to the Diamox - lips & face felt like they were vibrating/tingly; hot flashes, headache (your headaches may be from the Diamox), & some heart palpitations. I called my doctor who suggested I try half a tablet at a time to see if that was better. Half a tab was better but still occasionally gave me the same symptoms. Bottom line - I quit taking it. It wasn’t helping w/ my Meniere’s issues & the side effects weren’t worth testing it out over the long term. The only side effects I’ve had from Triamterene are occasional leg & foot muscle cramps.

I’m sorry you can’t take a bit more time off of work but am glad you’re starting back w/ a less physically demanding group of patients.

Please let us know how your first few days back at work go for you. Take it as easy as you can while at work.

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#43

I really wish I could get off the Diamox, feel so out of sorts with it. Have been taking it for at least 4-5 months now. Initially it helped now, Its turned my body into hostile territory. Super dry eyes. Chlorides too high, headaches, difficulty concentrating and feel spacy and tingling in finger tips and toes when I need the next dosage. Honestly I don’t know if its helping my vision at this point but I have t take it until next neuroopthmologist visit :frowning: Feel terrible.

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#44

So sorry to hear about your headaches. I too am having way more and am wondering why! I wake up with them. It is almost like I am getting blood into my brain at night and they get better after I have been up and moving for a bit. I find it very odd - like the rest of this journey!

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#45

If the doctor gives you any insight on them, please share.

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#46

sjlash & mariposa85 -

I found I had to sleep w/ my head elevated (25-30º) for almost 2 months post op or my throat would feel like it was swelling closed & I couldn’t breathe. My vascular symptoms were different than yours in that I didn’t get headaches or have IH, but I’m wondering if either of you are sleeping w/ head elevation at night? I recently went through a headache phase where I was waking up w/ headaches in the morning &/or in the middle of the night. Again, I found that elevating my head while sleeping helped stop this cycle. I don’t typically have trouble w/ headaches but had been on prednisone for a month when the headaches started & wondered if the weaning process was causing the headaches.

I know the bigger concern is what’s causing them. I speculate that the cause still could be your vascular & nerve tissues are repairing from the damage caused by ES. If, however, they continue or become debilitating, definitely get in to see a doctor. Vascular symptoms can be a bit slow to retreat but over the next few weeks you should see a decline in frequency & hopefully intensity.

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#47

Hi Isaiah,

I found it more comfortable for the first 2 weeks to sleep with a plushier pillow that propped me up more because of the pulling near the incision site. I don’t think it necessarily added to the headaches. I actually get the headaches more when I am sitting or standing or have any perturbations (such as riding or driving a car).

Like you I feel like the prednisone after surgery definitely set me on a downward spiral of malaise. I had taken it before for the vision loss and it seems to not make me feel great and makes me a little bit of a whack job cognitively and systemically. Waiting for the doctor to clear me from the diamox too. Honestly I really want to detox of everything to see how I really feel, just feel drugged up.

Had a brain and neck MRV and MRA tonight, praying everything is completely clear and the journey is coming to an end.

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#48

Hey guys,

Went back to work today for the first time since surgery. Felt so out of sorts. I got into the rhythm of things by the end of the day but definitely felt so awkward with so much computer usage. Up until this point, the most computer usage I had had was reading and writing on this page, lol. I performed neck rotations very carefully and cautiously. And did not push or pull anything of significance. I am so sore though esp in the base of the neck and into the shoulder blades. Its going to snow tomorrow here and it is very cold and humid so the ice pick throbbing over where my styloid was started mid day. Ugh. I have to continue to tell myself its only been 25 days. Patience and faith is what everyone tells me, trying to keep it my mantra through this process.

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#49

I do feel for you- being on the computer is easier for you than moving patients, but still a strain on the neck…hope that the MRA goes well & you can come off the medication…thinking of you :sunflower:

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#50

mariposa85 ~

I totally sympathize with how you’re feeling w/ the different drugs in your system. I’m still weaning off Prednisone. Since I was on a fairly high dose for almost a month, the weaning process is slow but better than not doing it & becoming an irrational lunatic that my family wants to lock out of the house. :crazy_face: I don’t like taking medications either, but they do serve a purpose & often help us function better, sometimes over the long term. It’s the side-effects that can make them feel “not worth it”.

Try elevating the computer screen at work (put it on a stack of books or a box, etc.) to bring it up to eye level so you don’t have to look down at it. Doing so should reduce shoulder & neck strain & which will hopefully reduce your pain. Also, even though I’m 4.5 & 5 yrs out from my ES surgeries respectively, I still get an occasional twinge at my skull base where my styloids were removed. I take it as my body’s reminder of how far I’ve come in my recovery. :grin:

I, too, hope your scans are clear & you get a clean bill of health so you can proceed “drug free” & start feeling like your healthy self again.

:blush:

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#51

Thanks ladies!

It’s so hard to remember that this is a process. I have this stuffed pressure in the back of my ear for the last 3 days and the swelling persists between the incision and my jaw. The lip is getting better I suppose but I am eagerly awaiting to wake up and feel good. MY MRA and MRV came back clean, still awaiting my MRI results. Calling the doctor’s office on Monday. My bloodwork came back where my chloride is too high from the acetozolamide (diamox). Honestly I feel like its cause my brain not to function properly… ugh… I feel so flat and apathetic at this point. It’s been a long road and cant wait for the day I am energetic and vivacious again. Anyone have a weird reaction with it?

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#52

Hi mariposa85,

I woke up on the morning of day 60 after my first ES surgery & thought, WOW! I actually feel good today! Like my energy was back & the world was a happier place for me. Even with that, I still had days that were more painful &/or less energetic, but it was the beginning of me feeling like I could get on with my life. Of course, the remaining styloid had to constantly remind me it was still there, but it had it’s day on the surgical table 9 months later & ceased to be a problem about 2 months after that.

I did have weird symptoms from Diamox for the short time I took it. I was told it’s the drug that’s given to people who climb Mt. Everest to help them acclimate to the high altitude more quickly. It’s no wonder we who live nearer to sea level have crazy side effects from it! I totally sympathize with you as I was able to stop taking it w/in a couple of months of the time I started & wasn’t on it longer-term like you’ve been. When I get extreme side-effects from an Rx, I stop it ASAP as I’m always concerned it’s doing more harm than good. I hope you can switch to something else or stop the diamox soon!

Your neck swelling may be contributing to the pressure in the back of your ear. Time should take care of both problems. I’m continuing to pray for you!

:beetle: :bouquet:

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#53

Thank you so much for the reassurance. So easy to get discouraged!

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#54

If I found this info before my surgery I’m pretty sure I would not have had it. My doctor did not go into detail about all of the pitfalls after surgery.

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#55

It’s surprising, as usually doctors are very careful to spell out any risks, (lots of doctors won’t do surgery because of that) although I’m not sure that they’re perhaps aware of how difficult recovery from surgery can be…some members have been told that they can go back to work after a week or 2, which isn’t possible for everyone!

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#56

It can feel like you won’t ever feel better in the first few days after surgery, but it will improve, you have to be patient…you’re not the first person to initially regret having surgery, but I’m sure things will get better.

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#57

Hi Rufus, I tried sending you a jesssge and not sure if you received it. I am so sorry that surgery did not help. How are you know? Has your surgeon been helping? Sending you all my well wishes x

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#58

Good morning Rufus. What a rough weekend that must have been for you. I’m glad you found us. We’re here for you.
There’s so much trust in there early days following surgery. I’m 7 weeks post op. Worst sore throat of my life when I woke up from surgery. I guess it was the intubation? That went away at day 5 or so. I also had a big spot of swelling near the site. Managing secretions was hard due to a crooked tongue issue I had.
The beginning can be rough. When you have time, will you tell us more about how you’re doing? Are you able to get the pain pills down? How is your eating?
We’re thinking of you and will help you through this. :blush:

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#59

Hi Rufus,

You feel like that now because you’re in the early days of recovery from major surgery & in lots of pain. Let me reassure you that if you hadn’t had surgery your ES symptoms would most likely have worsened to the point where you would probably demand surgery. Unfortunately, ES doesn’t get better w/ time because the styloids continue to grow or ligaments continue to calcify even if slowly thus creating a worse & worse problem as time passes.

To encourage you, surgery is the only cure for this syndrome, & you’ve taken the correct first step.

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#60

Maripossa and others on this discussion, I am 6 days away from my second eagles surgery. I have glaucoma worse on tthe right side . Morning pressures 20 with 2 types of drops. going on a 3rd tomorrow. Also have narrow angle so I had Yag iridotomy in June 2018. The right side is the one being operated on. I want to know if any of you woke up in the night with headaches, and high blood pressure before the surgery. It seems I am gettting really bad since they called me with my surgery date. I am sure some of it is anxiety and a little from trying to do some tax returns for my brother’s trust taxes. My parents left them trusts because they are handicapped and I am the substitue trustee since my mom died 20 years ago. Computer work hurts my neck and shoulder. You all have been through a lot I understand that you are all getting better but the road is tough. I have to face some more eye surgeries soon after this. I opted for this first because I think my optic nerve is being affected even though there is no scientific evidence and my doctors do not believe it . However I had more left eye problems before my first left surgery than I do since and my Glaucoma on that side is mild. The right side is severe and I am thinking that it could be from the time that I have had this styloid presure. So I am hoping that I made the right choice to do this now before the eye surgeries. That being said, I am trying to get some personal experiences with eye pressure and if the situation improves or not. I hope I can at least reduce the pain. Thanks, I will be waiting Gold Bless all of you.
I know we can not rely on our doctors because they honestly have no clue. We will be the pioneers for learning about Eagles and getting it recognized and the symptoms researched. It will take time, but I believe there is more information now than 4 or 5 years ago. Pray for me that I do not lose anymore peripheral vision. I can see pretty well now. I just need a few more weeks before I can start addressing the eyes more. I have a followup with my eye doctor in 3 weeks and seeing a well known and liked Glaucoma specialist on the same day to find out his opinions, while I am in Louisiana. I cannot leave my eye situation in the hands of just one doctor that I just met a year ago and whom I really do not know a lot about. She does seem right on but another doctor disagrees with her next strategy. So going for a 3rd opinion in 3 weeks. Just praying that I am not doing this in the wrong order.
Please respond about headaches, eye pressure and anything related to that. I need encouragement.

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