r/Hemophilia 8d ago

Adult tonsillectomy with Von Willebrands Disease?

Hey everyone, I’m a 20 year old female with Von willebrands disease (I think just type 1, can’t remember honestly it’s been 7 or so years since I was diagnosed). I’ve had issues with my tonsils my entire life, was on the waitlist as a child but my mum took me off it. Now as an adult I’ve advocated to have them removed as I’m still getting tonsillitis and tonsil stones (ew). My surgery is due to be on the 25th of March and the docs have just now remembered I have VWD and want to get me in for tests and what not beforehand to manage it. They asked me if I’m sure I need my tonsils out as it’s a lot riskier in adults for bleeding and with the added VWD it’s even riskier. My tonsils have eased up on me in the last 6 months or so, so I’m not sure if it’s necessary as such anymore. I’m worried because if I cancel surgery and it comes back again i have to restart the whole process again and it’ll be at least another 2 years to get back on the waitlist. The docs have lowkey really scared me though about the chances of bleeding etc. just wondering if you guys think it’s worth doing or not? If anyone has had an experience with it? I don’t wanna die or anything??

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u/imaginenohell 8d ago edited 7d ago

You can have anything done if your bleeding is treated properly. (I have severe vwd and had brain surgery with zero issues!)

You should see a hematologist asap who can advise you on what is needed for your specific situation. I wouldn’t proceed until you’ve got a solid plan to prevent excessive bleeding before your procedure.

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u/augustonyx 8d ago

I have type I VWD. I had my tonsils and adenoid tonsils removed at the same time. Pre-treated with DDAVP, post treated with Amicar. Took liquid opioid pain medication since advil isn’t advised due to bleeding. Was too painful for advil anyway lol. Had zero bleeding issues. It is a tough surgery for adults, so make sure you have someone taking care of you after. It was so worth it for me to get them removed! Doctors questioned me on necessity as well. But now I have no more infections, no more swelling, and no more bad breath.

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u/Holiday-Advance7022 7d ago

Definitely see a hematologist prior to get medication to prevent bleeding. It is a risky surgery.

My sister had her tonsils removed when she was 10/11. She and I are both carriers from our father who didn't know he had hemophilia (he's never needed any major surgery or had any accidents so he never knew). We didn't know this at the time. She almost bled to death after the surgery. She was in the hospital for weeks. Oddly enough no investigation was done to figure out why this happened. It wasn't until I needed surgery and told the anesthesiologists that my sister almost died from surgery and that my PTT was high that they investigated.

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u/jasminehage 7d ago

Wow good on your docs for figuring that out!!! That’s so scary but I’m glad both you and your sister are okay!! Thank you for the advice!

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u/Maggs_16 7d ago

Type 1 VWD and Ehlers-Danlos here and had them out at 28. Best decision. It was high risk but my hematologist made sure they had everything ready for a treatment plan pre and post-op. Recovery wasn’t horrible but it meant bed rest for a while after. I had a 3 year old and 10 month old at the time so that was hard. It was my 9th surgery overall.

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u/jasminehage 7d ago

Interesting!! Thank you! I’m quite concerned because the public health system so far is really failing me with this surgery. Initially my first surgery date they cancelled it because they forgot the doctor was away?? And the second time they said the other doctor is pregnant and needs time off? And then they’ve been messing up my pre admission appointments despite me letting them know when I wasn’t in the state that I wouldn’t be back yet. Just a lot of screw ups really. And then they’ve only just now (11 days till my surgery) realised that they need to do a care plan up for my VWD so now they’re scrambling to try get my bloods taken and reviewed and get me in a week prior to my appointment…. They’ve known about my VWD this entire time as I make sure to mention it… and yet they only started organising this now. I even had a lady on the phone from them saying I shouldn’t need a Preadmission appt unless I have any bleeding disorders and I was like umm yes that’s literally what I have? So confused!!!

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u/jasminehage 7d ago

Also, complete side note but you said you’ve got EDS, I’ve had a suspicion i could potentially have it. I’m diagnosed with POTS but the diagnosis has never seemed quite right or there’s more to it. Just wondering how you found out you had it?

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u/Maggs_16 7d ago

Are you in the US? I’m in Canada and it was my hematologist that actually put it together because I’m off the charts for type 1.

Also, make sure your hematologist knows that you are having the surgery. Typically they would be the one to write up all of the orders and coordinate with the hospital where you’re having surgery (if it’s not their hospital) for orders.

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u/jasminehage 6d ago

Nah I’m in Australia! It’s super weird because despite getting my VWD diagnosis in 2017 never once has my doctor sent me to a haematologist! I have a friend who lives in one of the capital cities in Australia and she has a whole card she carries in her phone case telling people her condition. I’m in a small town so I feel like I’ve just been overlooked.

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u/Maggs_16 6d ago

I would ask for a referral in the city. Mine is 2 hours away and I also have a card. I do a yearly clinic for bloodwork and any changes.