Tonsillotomy regret

[AelinAshriver]

I've posted the same on chat but only had 2 responses and still feel terrible so thought it might be worth posting here too:

DS(4) has chronic tonsilitus and sleep apnoea due to extremely large tonsils. He was due a tonsilectomy and adenoid removal which was today.

20 minutes before walking down for surgery, one of the surgeons came to see us and said they'd like DS to have intracapsular tonsillotomy.

This is because he is only small and the risk of blood loss is greater with a traditional extracapsular tonsillectomy and more complications can arise as even a small amount of blood loss can be detrimental when he doesn't weigh much.

Also. Recovery time is only 1 week compared to the normal 2 weeks and pain during recovery is significantly less than the standard extracapsular tonsillectomy.

I asked about the risk of tonsilitus. The surgeon said it is reduced. He may still get tonsilitus but nowhere near the extent he has it currently and most likely won't need antibiotics to cure. It will be mild.

Having this information, we agreed to have intracapsular tonsillectomy and 10 mins later, DS went Into theatre.

Surgery went well. DS is great. Doing really well. Staying overnight as standard as he was a late afternoon surgery.

But I have now had a proper Google about tonsillotomy Vs tonsillectomy.

It seems without a doubt the best route for sleep apnoea. But findings are unclear with reoccurring, chronic tonsilitus. Which DS suffers greatly from.

I feel like he will have gone through all of this; (We have had such a battle to get DS this surgery, it's been crazy. I've had to fight and fight and DS has been so poorly and missed SO much school)
For DS to only continue getting tonsilitus and be constantly poorly again and it was all for nothing and then he won't get tonsilitus often enough to meet the threshold for a normal tonsilectomy and we can no way afford to get them removed privately. But he will catch it enough to miss loads of school and be in so much pain and distress. It's so heartbreaking to see him so poorly.

And he's only 4 and I understand recovery is easier when they're younger so if we do have to wait years to have them properly removed, it's going to be worse.

We've already been hospitalised twice in the past when DS tonsilitus developed into scarlet fever / pneumonia and needed IV antibiotics. And after his cannula and waking up in the recovery ward today.. he just understandably hates hospitals.

Why did I do this to him when I could have chosen the original standard to tonsilectomy and it's over and done with in 2 weeks.

Instead we have to flog it out for years with DS being so poorly again. I'm just so gutted. I don't know what to do. I wish I could turn back time.

I really feel like I've fucked up and let DS down

You haven't fucked up, you are not an expert and you followed expert medical advice.

You can only hope it will work and deal with the future when it comes. This For DS to only continue getting tonsilitus and be constantly poorly again and it was all for nothing and then he won't get tonsilitus often enough to meet the threshold for a normal tonsilectomy and we can no way afford to get them removed privately. But he will catch it enough to miss loads of school and be in so much pain and distress. is entirely imaginary at this stage - the doctor may be right and the treatment he has had may resolve his issues.

You sound very stressed - understandably! - and I would suggest you focus on caring for yourself and your son in this healing period

I'm not really sure what intracapsular means, but my DS had his adenoids removed, grommets and inserted and his tonsils reduced when he was 2.5 after struggling similarly with recurrent tonsillitis, ear infections and sleep apnea.

The ENT doc said that they prefer not to fully remove the tonsils, especially in children, and so his were made around 70% smaller using a laser.

That was around 4 years ago, and DS hasn't had tonsilitis since.

Wishing your son a speedy recovery - my DS lived off ice cream and strawberry milk for a few days but it was 100% worth it.

You don't know it won't work though. Just trust the drs.

It's a stressful experience seeing your child in hospital but don't catastrophize the situation

Hi, this is a message for OP. We have been given the choice of the two methods of tonsil removal for my son. He suffers with recurrent tonsillitis. Has your son suffered with tonsillitis after his op? I’m leaning to choosing the intracapsular removal but worried he will still get tonsillitis.

any information would be great 👍

My child had intracapsular tonsillectomy last year for All the same reasons your son did- and like you surgeon strongly advised this method.

i won’t lie- we have had tonsillitis and scarlet fever since surgery which really threw me as in my head those days were over☹️ BUT
we have gone from tonsillitis every 6 weeks+ scarlet fever 3 x a year to just once in 6
months. Is it perfect? No. But it’s much better. Even with extra capsular method the tonsils can grow back so it’s not a guarantee. You are in no way to blame for anything- you took a surgeon’s advice. I hope he feels better soon X