Tonsillectomy : Hello! I was recently admitted... - Behçet's UK

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Tonsillectomy

Hello!

I was recently admitted into hospital as tonsillitis turned into sepsis, i was successfully treated and I’m perfectly fine now - well as fine as you can get with Behcets.

I have been offered a bilateral tonsillectomy as I’m getting these infections frequently.

Doctor today said that I would be at no greater risk than others, despite being on infliximab and at this point my tonsils are doing me more harm than good.

What experiences with tonsillectomies do you guys have?

Cheers,

Sam

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Hi, I haven’t had tonsillectomy but have been close a couple of times. I’ve always wondered if it would be the right thing to do, but searched on the posts here and found a number of people commented their behcets was much worse after and I found their comments really useful, I have only just been formally diagnosed. So it might be worth a quick search on the posts area. Best wishes

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Hi Millington,

At risk of sounding really negative, my experience with tonsillectomy and Behçets was not good...

I had suffered with tonsillitis on and off for years and, although I had experienced other symptoms over those years that I now put down to Behçets, I had not been really unwell with any number of symptoms at once.

However, the tonsillitis was regular and severe so it was decided I’d have them out. During the weeks which followed, I developed everything from extensive oral ulcers, eye inflammation, genital ulcers, arthritic pain, severe fatigue, I could go on and on. I then developed extensive neurological symptoms and I am now 5 years on, gone through every drug, all the biologicals, plus many others and my neuro condition continues to deteriorate. I am a full time wheelchair user and am currently losing the use of my arms having lost the use of my legs 2 years ago.

Now, there’s certainly no way of proving that the removal of my tonsils initiated the onset of everything, but I have my suspicions that my almost constant tonsillitis was at the time actually keeping a whole host of other stuff at bay.

Needless to say, whenever anyone mentions a tonsillectomy to me, my heart skips a beat and feel it is only right to give my experience. BUT this is only my experience and I know that others have had positive experiences so don’t take what I’ve said in isolation.

Wishing you all the very best with your decision,

Will 🙂

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Hi Millington

Have to agree with Will, I had my tonsils removed in September 2014 after suffering with them since I was a child and they just got chronic, I feel my Behcet's symptoms only increased after this time although I had suffered with ulcers both oral and genital since 16 this was manageable and never attributed to Behcet's this only became apparent nearly 2 years later in 2016-2017 and first diagnosed as Ehlers Danlos and then 12 months later Behcet's, the muscles, joints, body, gastic etc are all affected I truly believe the tonsils were keeping things at bay even though when they were removed and sent away they were putrid and literally full of pus, initially after recovery from surgery, which was hard, I felt great and I truly believed this was the answer to my ulcers, I had spoken to the ENT specialist and the Oral and Maxillo-facial specials about ulcers and nothing was attributed to anything and it was thought these would improve with the tonsillectomy but sadly this has not been the case. Would I have them back... this is a very hard one because I was suffering with them really badly but had I known about Behcet's back then then I might have thought a lot longer and harder and maybe some medication might of helped but who knows, but I believe tonsil and streps are a big factor in my conditions.

Today I am continuing to suffer with everything though not on any medication right now, bad allergic reaction to one and no use after initial 3 months of the other, the roof of my mouth continues to swell and only last night I have pus from the roof of my mouth coming down my teeth, no idea what is going on and at my oral and maxi appointment on 28 May it was thought nothing untoward was going on although I had no swelling at time of my appointment... and just said I was seeing new rheumatologist on 25 June so could discuss this with him and maybe a new drug to me would solve this issue... a one tablet cures all mentality! needless to say I was bitterly disappointed and this morning I have emailed images of my swelling mouth to them for advice on where I go now as I am again feeling pressure in the front of my head, nose, eyes, neck and across my cheeks and simply left to fend for myself just taking ibuprofen and using Corsodyl Gel to try and keep things at bay.

I truly feel that I have some form of bacteria or badness in my body that nobody is picking up on and it is hard not to know what is going on and especially when nobody wishes to take ownership of me and my issues... moan over.

The fact you know you have Behcet's prior to having tonsils out is a bonus and maybe this can be looked at alongside your medications as another solution to providing some relief without the need to remove them...

Good luck with everything you decide upon. Gillian

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I had mine at 17-18, as i kept getting tonsillitis about 3x a month aka i feel like im swallowing glass, always mistaken for strep...always coming back negative. My issue personally, not a behcets thing i dont think, is that I wake up under anesthesia. So I was pretty nervous about waking up in the middle of that. I am not scared of surgery by any means, I think i am a rapid metabolizer as my last successful anesthesia experience- the woman told me that I needed almost double the amount for someone my size. (I am 140lb female, she said she had to dose it for a 220lb male) ANYHOO

It was honestly an okay experience. I lost a lot of weight after bc it is pure hell to eat( went from 120lb to about 109lb). so tips:

get LIQUID vicodin, or liquid whatever the fack pain med. KEY WORD LIQUID...pharmacies have it. so make the dr writes it for liquid. Because when you wake up in the morning, that is the worst. It is dry glass cuts in your throat. so taking a sip of that off the bat by the bedside helps.

2. dont eat mashed potatoes....i almost died on this one. it basically created a plug, i guess bc of the swollen and dryness and I couldnt swallow it. basically vomit coughed it back up on the table...i may have also shoveled it into my mouth,...refer back to starving aka losing weight quickly.

all in all, it stopped all my throat issues. Thank god I had them out.

hope this helps!

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I still have mine, despite large issues when I was much younger. I often thought seriously about getting them removed but never did. As a young kid it was easier to avoid surgery, doctors, etc and just put up with whatever was going on. Now it rarely bothers me. My point to all this its somewhat possible you may out grow or you may improve without removing them. Good luck.

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My daughter had one with no huge probs although she took longer to heal than healthy patients, she is fine now. Good luck xx

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