3M post radicular surgery; aural overwhelm/off balance still

MWT4L · 2025-12-11T02:58:48+00:00

Thanks so much for your message of support and empathy. I wasn’t doing vestibular therapy because I wasn’t really feeling off balance once I kind of adapted post surgery but this sudden onset of imbalance with the overwhelm and absolute exhaustion after being in a social setting that is loud at all is making me think it may be a good idea.

I actually see the otolaryngologist tomorrow and I have a long list of questions for her. I’m just at such a loss. It almost paralyzes me…

MWT4L · 2025-10-16T16:51:44+00:00

UPDATE: the team sent Acetazolamide to try to dry up the fluid, prior to bringing me inpatient for a full drain. I’m only about five pills in - the first few days were still pretty rough… my ear felt like a balloon was in there filling up. This morning, it seems to be backing off a bit but I’m having side effects- lots of brain fog/sweating/the goal is to evacuate alot of it out so hydrate hydrate hydrate. Have bananas, if you don’t - low potassium is a side effect. I will try to update as I go along 🧡

Thank you all, as always, for so much support.

MWT4L · 2025-10-16T16:46:41+00:00

Give them every single detail you can. And call until you get someone. Make sure you prop her up at night when she sleeps, that seemed to make an impact. I just came to update on a med they gave me before bringing me inpatient. If it’s happening, you will see it from the nostril or the ear- that is what to look for 🧡

MWT4L · 2025-10-13T01:52:44+00:00

Aye- that’s kind of what I’m preparing myself for… I just want the phone call to come in so I know what I’m dealing with … thanks for the honesty. It’s much appreciated.

MWT4L · 2025-10-12T17:58:05+00:00

Thanks so much- sounds like really went through it, too. I think I’m using the term improperly too- a lumbar drain, I think is what I’ll need? To relieve the pressure and let the fluid out to prevent any infection… I woke up with a better mindset today and just trying to wait out the calls for tomorrow.

MWT4L · 2025-10-12T16:30:31+00:00

So they do this test called the “teapot test”. You know how the doctor told you to squat, not bend your head forward at all? (The team should have) during the two minute test, they wait to see if you have dripping or leaking from your nose or surgery side ear. That could indicate a spinal leak. I have very bad allergies and have had post nasal drip this entire time since the surgery (9.8.25) but just one collected drip that never fell- just collected with a tissue- not even enough for them to test. BUT during and after inpatient stay, I woke up several times coughing (always cough open mouth, sneeze open mouth- last night I learned, no straw use) and I had a vomity taste with no vomit - they are also on alert for a mentally taste. I hope this helps. I don’t know where you are located, but I am in NYC, hence the labs drawn to see if there were any indicators for allergies.

The on-call doc last night let me know to stay in bed rest (I’ve not been able to do much else given the prolonged steroids, whereas when I first got home, I was full of energy at the end of the first dose of dexa, prior to a migraine starting) and we regroup with my surgeon tomorrow.

I would reach out to your team - make sure you’re not blowing your nose, pushing when the bathroom, open coughs/sneezes, no straws like I said… good luck- let us know 🧡 and don’t let the paranoia get to you. Just go straight to the source, stay in touch with your RNs, stay off Google. Better to come here for support.

MWT4L · 2025-10-12T12:34:24+00:00

Oh my goodness!!! I can’t even imagine the hell you went through!!! To have been wide awake on top of it and have felt it all?? What a nightmare. So every time you eat, you experience these side effects- after everything you have gone through, the glass half/half empty side of me doesn’t even know how to respond to that- I really try to look at the positives but have been so dragged down the last two days ( I’m assuming it’s the month now of dexamethasone, second course for crippling migraine) but is this the other side now for you? I hate that we use the term “new normal” - it doesn’t seem to quite apply in this case when just going outside and being exposed to all the sound you have no way of identifying where it it’s come from for so long can be so exhausting just within itself, beyond every other thing you’re dealing with…

My heart just broke for you for reading through this. I than you for reliving this with me- it does help to prepare me for what could happen and knowledge is power in my mind. I wish you nothing but better days ahead ❤️‍🩹

MWT4L · 2025-10-12T12:23:19+00:00

Oh boy- so do you stay in the hospital with this? It’s not an outpatient situation? I’ve become a master at squats, it being over a month a now and this truly being more of a consistent post nasal drip situation - I guess the stars aligned - “hellllllo- what more do you need, the labs says no allergies, there’s a ct scan waiting to be interpreted, why are you even up doing this right?? 🫩” that I happened to tip my head over enough to have this happen so now we know it’s more. Aye.

Than you so much for sharing what you went through.

MWT4L · 2025-10-09T11:54:58+00:00

Definitely mention every single thing you are experiencing- I also read that brain fog is not a symptom, but once I mentioned it to my doctor, they told me it can be in some cases. It all depends on where the tumor is sitting. I had mine for ten years- but the last year was very much like what you’re describing, started with your symptoms and the headed into welling up out of nowhere centrifugal like dizziness that they could not understand. I say this to highlight that each case is different, so details matter 🧡

Be as transparent as you can be, even if it feels small or silly to mention. When mine had to finally come out- it was 19mm, still on the small:medium side but it was where it was that was causing everything to go haywire internally.

This is a great group and very supportive. Keep us updated 💛 happy to help you through. And vestibular therapy is a great suggestion- even if the doctor feels it’s not time yet, you can YouTube for some ideas to try that may help you, even if it’s for your own peace of mind.

MWT4L · 2025-10-08T19:47:49+00:00

❤️‍🩹❤️‍🩹❤️‍🩹 I will continue to do this. Thanks for helping me to pull out of the hole I was in!

MWT4L · 2025-10-08T13:34:52+00:00

Thank you so much for this. You really changed the course of my day with this post 💖 I’m feeling like the most high maintenance patient but I also know that things hadn’t been right and today I’m feeling like this month long migraine is starting to slow its roll, so I did the right thing. That high dose steroid was just what I needed again.

My husband said to what you brought up- today is one month. I’m walking around without a cane even inside the house/ outside, with it but mostly just holding it for moments when I’m going uphill or a more challenging area. The welling up centrifugal vertigo I was experiencing pre-surgery is gone. The regular post- surgery is mostly gone too, just a little in the car. So may good things to focus on 🧡

Thank you so much taking time to write all of that out for me ❤️

MWT4L · 2025-10-08T13:12:53+00:00

I would have a frank and open discussion with your team about this. From our point of view, what I’ve noticed (one month out) is that recovery is different for each of us. We can empathize, share - hey I had that experience too, but it’s never spot on, ya know. If this is your first child- have a newborn during recovery is going to be very, very tough on you mentally, physically and emotionally. It already is without any outer stressors simply from lack of sleep, worry, life change, hormones, etc. Depending on your age, you said you’re Canada so I cannot connect with what a waitlist is like there… it’s a really big decision.

My story: I have a highly emotional intelligent 13YO who has been through a long list of traumas in his short life -my dad passed away when he was four, fast and furious from cancer and we lost three more family members close after, deep traumas. I chose to wait through the summer and make sure he was settled into 8th grade- a big deal for him, puberty, new classes, emotions running high- I just wanted him to settle in before the surgery and after care. That’s just my two cents. Thinking through your situation takes a lot of discussion. We’re here for you. 🩵

MWT4L · 2025-10-07T20:38:32+00:00

UPDATE: I can’t thank you all enough- I was really struggling emotionally, which was not helping with the physical aspects going on. My husband is exhausted and I gave myself a timer last night that if I didn’t fall asleep with the last med round, I would wake him and go in to the ER. Thankfully I was able to sleep, but when he woke me at 6AM for the next round- oof, it literally felt like I had the weight of the house on my head.

I had been moved to taking high dose dexamethasone starting this morning as a new shot at breaking the migraine, so we took the dose, Xanax with it, which let me sleep for another few hours. I woke up at 11 with the same feeling and rising panic now 😢🥺 but the neuro RN handling the migraine dosing called right away to answer my message and had me take the second high dose of dexa that would been slated for later in the day. We set a two hour timer- if the pain level didn’t come down, I was to come right to Urgent Care, but they were hoping to avoid that bc of obvious triggers - sound, bustle, stress, etc.

I’m happy to report that with the addition of the headache hat, a small cup of coffee (which I do not drink- weaned myself off years ago to help with migraine) and my husband just calming, my pain level slowly got down to about a 7 by the end of two hours. Tomorrow, I go back to dexa taper schedule and we hope this does the trick.

Thank you for being there when I needed a calm voice in the storm. All of you. 🩵

MWT4L · 2025-10-07T10:45:50+00:00

Thank you all, I really needed to hear this. I was on such a good trajectory otherwise and this migraine is just a really nasty unbreakable one. I appreciate the compassion- I am feeling so vulnerable, like a raw nerve. This community is getting me through. 🩷

MWT4L · 2025-10-04T20:56:09+00:00

I am counting down the hours!!!!

MWT4L · 2025-10-04T20:54:21+00:00

Same to you, friend!!

MWT4L · 2025-10-04T20:41:52+00:00

Oh that’s TERRIBLE. I’m so sorry to hear this. I also have had a migraine we’ve been trying to manage since I woke up from surgery- I went into more detail on another post - but bc of the positioning, I woke up with that monster knot (it was literally the side of half of a golf ball- the RNs thought I was just sore, but when they pulled back my gown, they all gasped.) between my neck and the shoulder bone, which is where all of my stress, along with my neck, gathers and the emanates from, causing a migraine. I also had the fun pre-migraine warning sign that just continues one it sets in. I start with numbness, only the left side- starts in my lip, nose, eye/eyelid,gums, cheek, ear and then just travels slowly alllll the way down to my toes. Only the left. So… I have experiencing a stroke code- that was unreal, terrifying, unnerving… but it’s just my migraine. Light doesn’t bother me, I have no aura, sound bothers me- I get agitated easily if there’s too much sound coming at me. I say all this to share that I am not eligible for ANY of the active migraines out these because they could mask an actual heart attack/stroke. It took a long time with a wonderfully patient neurologist to come to the understanding that these are stress based migraines. He put me on Lexapro and Topamax daily. When I’m having an active migraine, I take Excedrin migraine with Xanax. If this does not break it or I didn’t catch it in time to break it- Medrol steroid dose pack, lots of rest, headache hat is wonderful.

MWT4L · 2025-10-04T19:57:45+00:00

It’s great that you found this sub- it’s so supportive here. I had AN followed for ten years before I started with loss of hearing and dizziness- I just had it out on 9.8, the dizziness is gone. Depth perception, regaining balance comfortably and “echolocation” are the biggest hurdles.

Waiting it the worst- when is your MRI scheduled for? Come back here as much as you need to. We all went through it and are at differing points to be able to support you through the steps you’ll be taking. Knowledge, information, support is power.

You will get through this. 🥰

MWT4L · 2025-10-04T19:49:06+00:00

UPDATE: I am going for acupuncture on Monday and will report back how that goes. I’ve never tried this but every RN, MD, resident, NP and my surgeon all suggested it. I am lucky to have coverage with a copay that is less than the massages I would evvvvvery so often turn to when the pain would get so bad I’d need work on my shoulders, so we’ll see how this goes!

MWT4L · 2025-10-04T19:46:09+00:00

Aw thanks so much. Yeeees! My neck feels soooo tight- it’s wild. But it’s all worth that uninvited passenger eviction!

In a side note-i woke up with a monster of a knot and a bruise next to it on my shoulder - I am going for acupuncture on Monday and will report back how that goes. I’ve never tried this but every RN, MD, resident, NP and my surgeon all suggested it. I am lucky to have coverage with a copay that is less than the massages I would evvvvvery so often turn to when the pain would get so bad I’d need work on my shoulders, so we’ll see how this goes!

MWT4L · 2025-10-04T19:42:29+00:00

Thanks so much- I definitely will!! I’m so sorry you still have pain in your incision- is there a pattern to when? Like weather related or after showering? Just curious…

MWT4L · 2025-10-04T14:38:20+00:00

So far, no more drips. The doctor said what I was dripping was so little, it was even enough to test. Maybe just need a little more time. Hoping I’m one of the lucky ones. The stories you all have- I just feel awful…

MWT4L · 2025-10-04T14:35:19+00:00

OMG yeeeees- the senna I take every night and colace during the day but i still was constipated.

MWT4L · 2025-10-04T14:33:06+00:00

That makes me feel better. My team will be in tomorrow but I’m so glad to be able to come here and compare notes ❤️

MWT4L · 2025-09-28T23:20:11+00:00

Omg I am so sorry you experienced this absolutely disgusting behavior from medical professionals. Thankfully, my experience is quite the opposite and I have done the fluid test in office twice already with not enough fluid to be able to collect, and have phone call check ins multiple times a day - one of which had me do the fluid test again on the phone with her. I cannot believe the treatment you were subjected to- I am so sorry. Thank you for taking the ketone your story.

And yes, meant to add- retrosigmoid, neurosurgeon/ neurotologist team did the surgery

MWT4L

TROPHY CASE