Author Topic: Got admitted to hospital 4 times, surgery finally planned !  (Read 1954 times)

davebanninga

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Got admitted to hospital 4 times, surgery finally planned !
« on: January 18, 2023, 06:12:16 pm »
Hi everyone, I've been taken of the watch and wait I went for a second opnion at our national expert centre the LUMC in the Nederlands.

Although my first doctor acted with the knowledge he had he should have reffered me to them immediately, my tumor grew from 40mm to almost 50 mm in the course 2 months thanks to a bleeding in the one of the blood vessels of the tumor.

I was bed bound, vomitting couldn't eat and had the worst headache imaginable. Only thing they prescribed me was oxynorm, and told me they couldn't do more for the pain.

My current surgeon and their staff went out their way to describe in fine detail what to expect, they have so much knowledge it's unreal.

He prescribed me dexamethasone, he told me that should have been done by the first surgeon as soon as I came in to the ER, instead of telling me I should accept the pain untill a surgery was planned.

Iam currently in the hospital, and it's like a elephant just lifted his butt from by brain for the first time since this all happened.
I'm gonna hear from them if the surgery will be taking place this Monday or Monday the 29th at latest, in the last case I can go home if the dexamethasone shows to be effective.

Goes to show how important a second opnion is, especially in  low population  countries, my advice would be go to the expertise center where they do 800 a year or 1600 as I believe they did over here,  then the 3 AN's my first surgeon the first one might be a knowledgeable surgeon and a great one but might not know all ins and outs about managing symptoms.


I'm actually looking forward to having mine removed, I'm seeing it as 5 steps back and then focusing at the future instead of dreadfully waiting for the next symptom to show.

If my headache can stay away after surgery like it does now with the pressure relieved I would be a happy man.


Diagnosed Nov '22 
left AN 40mm
Put on wait and scan

Jan' 23 vomitting and severe headaches.
2nd MRI Jan'23 showed 48mm (8mm increase because of bleeding in tumor)

Surgery planned for 23th of Feb '23

donjehle

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Re: Got admitted to hospital 4 times, surgery finally planned !
« Reply #1 on: January 19, 2023, 09:57:32 pm »
Thanks, davebanninga, for sharing your good advice and telling us what is happening.  I'm looking forward to hearing more after your surgery on Monday or the following.

Best wishes on your procedure!  We'll be thinking of you then!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

mwatto

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Re: Got admitted to hospital 4 times, surgery finally planned !
« Reply #2 on: January 19, 2023, 11:27:22 pm »
Wishing you a speedy recovery! All will be well - and that alien will be gone- a big relief!!
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing