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Hughes Syndrome APS Forum

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Any advice before going in for an op with aps?

Charts profile image
14 Replies

I'm going in for an op tomorrow on my ear and I'm nervous because of my diagnosis with aps. Anything I should know I should or shouldn't be doing? I'm not confident in their knowledge so may I need to tell them anything?

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Charts profile image
Charts
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14 Replies
lupus-support1 profile image
lupus-support1Administrator

Sorry to read you need an operation. What’s the operation? I assume you have contacted your haematologist to discuss what is required?

With good wishes,

Ros

Charts profile image
Charts in reply tolupus-support1

I've seen a anesthesiologist so they are aware (hopefully they know enough) I have a retracted eardrum, so they need to cut behind my ear from top to bottom and fix it. I get it fixed and it happens it happens again!Thanks for your reply

Nina

lupus-support1 profile image
lupus-support1Administrator in reply toCharts

Nina, I am sorry to read this keeps happening!

I understand your concerns and wish you a speedy and complete recovery.

Ros

Charts profile image
Charts in reply tolupus-support1

Awww thank you!

GinaD profile image
GinaD

Your APS doc should be in your medical loop.

Charts profile image
Charts in reply toGinaD

He don't get involved in anything. He don't seem to understand aps well, well especially anything neurological I mention. Woke up after operation having seizures/spasms don't know what it is to be honest and no one got any answer's why I'm reacting

Womanfriday profile image
Womanfriday

I'm so sorry you've reacted like this. If you're going to be in bed for a few days, make sure they give you surgical stockings to keep your circulation moving. And of course keep taking all your medication.Otherwise I'm afraid you're probably in the best place.

Charts profile image
Charts in reply toWomanfriday

I wear stockings daily as I have pots syndrome and they help with that. I just go got to ride the storm for nowThanks

Jillymo profile image
Jillymo in reply toCharts

Have they checked your B12 and Folate ? It is possible that the anaesthetic could lower your B 12 levels hence the seizures ! Just a thought but one thats worth checking out.

I underwent a similar operation for a perforated eardrum when I were in my teens. Good luck and hope all goes well. 💐

Charts profile image
Charts in reply toJillymo

Yeah I'm in hospital now and they've checked all my bloodsThanks you

MaryF profile image
MaryFAdministrator in reply toJillymo

Good idea. MaryF

MaryF profile image
MaryFAdministrator

I hope your operation went well and that you are now recovering well?? MaryF

Charts profile image
Charts in reply toMaryF

I currently back in hospital from having spasms all over, even in my face. They gave me diazepam and stopped it. No one has ever tried anything to stop. It's all been really bad since my op

Bloodredroses profile image
Bloodredroses

REST let immune recover if APS .

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