Post op day two

Hey Caleb,
My cerebral blood flow has been restricted, corrected, altered and messed with a few times and PHEW those spacey weird sensations, that’s pretty normal. Any change in cerebral blood flow (more flow or less flow) will have an effect. Over the years subtle changes, slow restriction, is much less noticeable, but when normal flow is restored or less restricted, that additional flow can take a while for both the body and mind to adjust too. My last major neurosurgery was back in 2013 and still today I go to stand up, I see stars and if I don’t brace myself ( grab a wall or furniture) I can find myself on the floor.

Now, I admit my situation is not ES related. But when it comes to blood flow and the brain, let’s just say I have some first hand experience. Both the body and mind can adjust, it just takes time. Those ‘spacey weird sensations’ have become ‘normal’ and I’ve learnt to get up and give my body time to adjust. It’s slowed me down somewhat, but that’s better than finding myself on the floor, wondering what on earth just happened.

Merl from the Modsupport Team

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Hang in there, hopefully it’ll settle soon, it will take you a little while to adjust, & is very early days yet :hugs:

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Thank you for sharing your experiences, it’s just unnerving right now. Thoughts of “is my cerebral flow better now?” “Is it worse?” “ did I make the right decision on getting the surgery?”
All swirling in my head. On top of everything else. I’m just going to slow down try not and worry and take it one day at a time.

What procedures did you have done to change your blood flow? If you don’t mind me asking?

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Thank you Jules, some of the positives are that my swallowing has gotten better, and I can walk to the kitchen and be upright for a few minutes without feeling completely awful. I know I sound like a big pansy complaining and asking questions all the time. :sweat_smile:

I’m glad you are finally on the other side? Who did you finally get to do your surgery? I hope you have a speedy and smooth recovery!

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No apologies required here, Calebp! You’re not a pansy by any means!! You’ve just had major surgery, & the after effects are weird & disconcerting. Just keep reassuring yourself that some of it is medication side effects, some is caused by post op inflammation & some is your brain adjusting to better blood flow. In a few weeks things will be much better.

Not at all, it’s a worry when you can’t see what’s going on inside! As long as you keep focusing on the positives, & remind yourself that surgery takes a while to recover from you’ll be fine, patience is hard but needed! :hugs:

Dr Nuss in Baton Rouge, he is one of the nicest people I have met.

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I’m so happy for you and I wish you a speedy recovery.

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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 :heart::heart::heart:

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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.

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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 :wink: 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

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You can call Dr. Nuss’s office & ask that question if you don’t get an answer here. :blush:

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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 :upside_down_face:

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That’s an awful lot to go through! You’re definitely in a position to give advice!

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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 :it:and practicing my Japanese :jp: . 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. :sweat_smile:

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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. :man_shrugging: Im just guessing that it has something to do with blood flow or swelling.

  • Good things so far :
  1. hands and feet feel better
  2. swallowing has progressively gotten better
  3. able to walk around more around the house

-Bad things so far

  1. dizziness
  2. pulsitile tinnitus when standing
    3)tiredness
  3. neck pain on either side and on my backside of my neck/ upper back
  4. 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 :upside_down_face:

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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 :pray:

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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.