I’m happy to hear your surgery recovery is going well. The lump in the throat feeling you’re having could possibly be irritation from the tube. Almost every surgery I had resulted in me waking up feeling like something was stuck in my throat for about five days because it can cut the throat. However this last time I requested a child size tube and it was the first time I woke up from a surgery without that feeling in my throat. It was incredible ! So hopefully the throat feeling subsides in a few days for you. The pressure headaches that you hear of didn’t happen for me until day 12. I remember it like it was yesterday because it hit me like a baseball bat in the face and I thought I had a sinus infection at first until the fuzzy came. Unfortunately it lasted 75 days for me. I don’t think everyone gets them though. I have bilateral vascular compression (IJV) so I think that’s why I got it. I also had steroids after surgery so I might have set that off as I hear that can raise ICP. Hopefully you wont get the presure headaches as some people don’t. I was very fuzzy for a while which makes it hard to do much if anything. I track mine on a calendar and they finally left after 75 days. They are gone now thankfully! (3 weeks so far). For me the worst day for pain was day 7. Idk why but the rest were pretty good. Sense everyone is different because I hear some people say day 3, 5, Or even day 10 the worst. etc. Also like someone mentioned above, tired is good. For some reason I was not tired at all after mine and I did way too much. I actually felt better than I had in years in the first 5 days after surgery so I went a little crazy:joy: cleaned, organized, etc. I won’t do that again. I will force myself to lay down. So definitely take it easy for a while Even after the tired subsided because you don’t want to hurt yourself:) I think 2 weeks of rest seems good and then slowly work your way into Daily life. Listen to your body. Your body will tell you what you can and can’t do. Don’t over do it. This is a much longer process than any other surgery I Ever had. It gets easier and easier though. I even talked to some people who felt great after a week so everyone truly is different! I hope you have a good recovery and get relief of all Eagle symptoms 
Does Dr.Nuss do virtual consults? I’m trying to find someone who can remove my left styloid to the skull base. I’m in Texas and haven’t found anyone here who can. My doctor left 0.5cm on the right side so I would like my left side done fully to see if it shows a difference between them.
Hey Caleb,
“What procedures did you have done to change your blood flow? If you don’t mind me asking?”
I have a brain tumour that’s needed to be operated on a few times now (6 so far) and have a shunt (a plastic tube) inserted into my brain to remove the fluid. I also had a craniotomy, where they opened up my skull. They believe they found a brain in there, but some days I do question that 
Every time they operated the flow of blood and fluid has been altered, so pinpointing an exact cause/effect has been impossible. Each operation has added a little more to manage.
That “ did I make the right decision on getting the surgery?” question is one many of us with rare conditions often ask. From my experience, if you asked 4 different dr’s that very question, you’re more likely to get 4 differing answers. I don’t think it’s a case of ‘right vs wrong’ but rather ‘options’. And whenever you/we have options we question ourselves ‘did I choose the right option?’.
That ‘…swirling in my head…’, that’s normal too. My advice: Try to keep yourself occupied. I find if I sit and think about it and think about it and think about it some more…OHH what a mess. I need to keep my mind occupied doing something, anything to divert the mind., because if I sit…not good. As patients, we only have limited knowledge and once we’ve exhausted our answers, then what? We keep going over and over the same, same, in ever decreasing circles. NASTY.
I think your plan to slow down and try not to worry is a good one, but if you can keep yourself occupied the time will fly by much quicker.
Merl from the Modsupport Team
You can call Dr. Nuss’s office & ask that question if you don’t get an answer here. 
I think he wants a in person at first, but I’m not sure I’m only 3 hours from there so I just got my dad to drive me but I do know they have the ability to do video.
They gave me steroids as well. Has anyone had change in their hand and feet? Like reynauds because since the surgery my hands and feet don’t get near as cold and they feel more full and responsive. The only things that have changed is the surgery and me taking steroids. But I hope the surgery has relieved the problems with my feet and hands. Because if it was the steroids then that brings up a whole different problem. Even though I’ve seen a rheumatologist and neurologist with almost every test done they can. And nothing to explain any symptoms. But I’m just going to see how it plays out. Tomorrow is my last days of steroids of a 6 day treatment. So I guess we shall see 
That’s an awful lot to go through! You’re definitely in a position to give advice!
I’m sorry you’ve had to go through all of that. But I’m trying to preoccupy myself. I’m currently re learning Italian 
and practicing my Japanese 
. But I figured that it’s going to take time for my IJ to function correctly again and for everything to adjust and heal. It’s just the uncertainty that comes with everything. I just want to get to the point where I can work from home. I’m a travel RN and I’ve looked into at home jobs until I’m able to get back out there. As crazy as it sounds I can’t wait to be able to work again. P.s. Sorry for the rambling. 
Update day 7.
I’m able to move around more without getting as dizzy. It’s still weak and get dizzy when standing and doing to much. My opposite side of my surgery sometimes hurts. I’ve seen where people have said something about this happening before. And I’ve also had some weird things happen like Pulsatile Tinnitus but mostly when I stand. Which is opposite of how it was before surgery. 
Im just guessing that it has something to do with blood flow or swelling.
- Good things so far :
- hands and feet feel better
- swallowing has progressively gotten better
- able to walk around more around the house
-Bad things so far
- dizziness
- pulsitile tinnitus when standing
3)tiredness - neck pain on either side and on my backside of my neck/ upper back
- muscle pains on both sides of neck
But there are positives though! So hopefully I keep adding to the good list and taking away from the bad
Let’s hope so Calebp, hang on to those positives! Are you still sleeping propped up? You’ll still have swelling so that will help.
You’re right that the opposite side can become more noticeable after surgery, unfortunately!
Will keep praying for you 
I assume you have bilateral ES & as you noted & Jules confirmed, once one styloid is removed, the other one often starts causing more obvious symptoms (though in my case both of them were trouble causers all along). Pain at the back of the skull is not unusual since your styloid was cut off at the skull base & that’s where that is. That pain will go away in a bit.
I’m really glad for the progress you’re noting. As the swelling reduces & circulation increases, your symptoms may change more & you may get more odd pains as the nerves wake up again. These will come & go over the next 2+ months but most often they eventually go for good. You have that to look forward to. Anything that’s left over is likely coming from the remaining styloid if it’s elongated, & those will go once it’s removed.
Yes it has been a journey, I can give some advice. I know about intracranial blood flow and have experience with that. But you lot have first hand experience with Eagles and I can’t give that knowledge. Personally, I’d much rather those who know from their own Eagles journey give their ‘first hand’ experience. I can give you all of the book theory in the world, but a book theory is not experience. I get rather frustrated with medicos who give me a book theory, that’s the last thing I want to give you fellows. I’ll leave that to the experienced.
Merl from the Modsupport Team
Firstly, stop apologising. When I initially found Ben’s I too rambled LOTS. I’d finally found others who had been here themselves and understood just where I was at. And that was a first. The medicos made out that I was the only one who ever reported the odd symptoms I was having and I felt VERY alone. Then I found Ben’s and the floodgates opened, turns out I’m not the only one at all. In fact many members have reported similar experiences and I needed to hear that. It helped calm my over, over, over active mind.
So if you need to ramble…you do so. We have to get those ‘ramblings’ out of us, because if we don’t the weight of our concerns can become overwhelming and that’s never good.
It’s not crazy that you want to get back to work, I did too BUT I pushed myself too much, too soon in trying to get my life back, doing myself even greater harm, requiring further surgery. I’ve now been told I’ll never be able to return to my former role. As I often tell others ‘Take the time your body needs to FULLY recover, and not just the time you mind thinks is enough’ Listen to your body, it will tell you, but only if you listen.
Merl from the Modsupport Team
Merl,
You have given us wonderful insight from your own difficult & sad situation. I have long preached that listening to our bodies is the best path to healing more fully, but even I didn’t heed that advice when it was my turn, & it did set me back. I’m sorry for the way your situation turned out, but you might not be here sharing your journey & compassionate, caring advice if all had gone well for you. We are so thankful to have you as a part of our Ben’s Friends team. You’re a vital player here. 
Thats interesting Caleb ie: Raynauds symptoms improved. I hope that continues.
My daughter has similar type neuropathies. They did a simple nerve test called QSART (usually at investigation studies like at higher education medical centers) and diagnosed with small fiber neuropathy. It can be associated with autoimmune conditions. Common in diabetes. Autoimmune conditions not so easy to diagnose. If you can live in a climate that doesn’t have extreme hot and cold and stable barometric pressure, it wont be so sensitive. Apparently in the us, the best places for that are San Diego, CA and Hawaii.
Learning to sleep upright and trying to protect your neck can cause the neck muscles to cramp up. If you could could getin for some gentler massage of neck and shouldes it might help. Also an all body massage might help empty your lympathic system of all the anesthesia drugs and improve your dizziness? Remember your body is trying to recover. Happy healing. be kind to yourself.
Thanks Isaiah,
Yes, my situation hasn’t exactly gone to plan (Well not my plan anyway).
As a child I was always the kid that asked “Why?” And more often than not the answer I got was “Because I said so…” That’s not an answer. I was never a good one for just accepting that and often got myself in more than a little strife as I would push those boundaries (repeatedly).
Many of the medicos have that same “Because I said so…” attitude and maybe it’s just my rebellious side, but I still don’t like accepting it. You won’t ever get that ‘Because I said so’ from me. I wouldn’t accept it, so why should anybody else? So, I use experience, my personal experience ie “Don’t do that because that’s what I did and this is where it lead… …You don’t want to go there?” As I said to someone the other day “If there was a right way and a wrong way, you can bet I did it ALL the wrong way, Ahhh, don’t be doing that…”
You can’t get that sort of knowledge from a university textbook, it’s a lived experience thing and that’s what I try to share, warts and all. Dr’s love to give us the ‘Best Case’ scenario, the reality can sometimes be far from it.
Merl from the Modsupport Team
Thank you, Merl, for more sage, experienced advice & sharing!
Need y’all’s opinion on my sutures and incision line. I let it go for 2 1/2 days without changing it and cleaning it because it was doing fine every other day. But I checked tonight and it had a little big of gunk on it. And kinda freaked myself out thinking it was infected. But my parents told me it just looks like it’s finishing healing. Because it’s lot inflamed or swollen. Just wondering what y’all think about it?
The middle one is before I cleaned it again
Thank you for the advice, I’m trying to take it easy slowly increasing my daily activities. Went from sitting up for a few minutes a day and walking to the bathroom- to sitting up most the day, then i have worked my way back up to washing dishes, taking out my dog and cooking lunch for myself over the past 3 weeks. But before my surgery I was stuck lying in bed not able to walk to the bathroom for months. But it has been a crazy ride so far. And I appreciate y’all so much!