Had surgery on BOT and neck dissection (levels 2-4) last week (5/29). Unfortunately had a huge bleed on the Friday (5/31), was rushed back into theatre and they couldn't incubate me when they put me under the general anaesthetic and had to do an emergency tracheotomy.

I woke up in critical care - very, very scary - but hey, I'm still alive & kicking so next steps....

This fricken tongue is so sore. Who can tell me of their experiences with BOT surgery?

How long will it keep feeling like this? I know it's only been a week but even swallowing water hurts and I have to time my pain medication & food so I can even get something down. The mechanism of swallowing is working fine, it's the pain that's stopping me from taking in what I should be.

My face/neck is numb and I've noticed some loss of strength in my right arm but I'm told both of these are from the nerve damage and is just temporary and will come back over time. The nerve was kept intact, it's just traumatised - poor nerve.

I've lost 4kg already but have been stead for the last 2 days so I think I'm getting enough in now. Having high-energy nutrition drinks prescribed to me as well.

It's just the pain. How long does it last? What can help? What sort of medications or timetable of taking them worked with you all?

Thanks.

Meli, I am so sorry to hear of your problems! Being in pain is NOT helpful at all to any patients recovery. Speak up and tell your doc how much you hurt. Keep at them until they make adjustments to what you are getting for the pain.

When I first woke up from having my mandibulectomy (lower jaw removed) I felt like I had been run over by a bus. I cried and cried I hurt so bad. I complained many times and finally it hit the right ears and my docs upped my pain meds.

I was given 2 meds, morphine and oxycodone. I had my choice of which medication they gave me and even how much too. I would alternate the meds as I was only able to have them given every 4 hours. When it was only 3 hours time lapse and I was in severe pain I would ask for the other type of medication which would usually do the trick.

Best wishes with your recovery!

Hi there.. I think I responded on your other post. You will heal. Give it time. Complications aren't fun and generally stall the healing process. Don't push, give your body time to heal. Make sure they manage your pain and stick to mild foods and fluids, lukewarm temps, soft stuff, and avoid acidic stuff for a while.

The numbness will get better in time but it truly never goes away, they've damaged nerves and they do regenerate - but very slowly and not completely. And he arm/shoulder will require physio to get it back to optimum working condition.

heal up... ;o) and feel better.

Thank you.

Hi Meli,

While I didn;t have BOT surgery, I did have two tonsillectomies (palatine and lingual), two sets of biopsies (BOT, nasopharynx, throat, etc) two laryngoscopies, a selective neck dissection and emergency surgery to stop bleeding.

The last surgery to stop the bleeding was Feb 18th. Between the surgeries, the chunks of flesh they took out for biopsies and the treatment, I'm still dealing with mouth and tongue pain 6 weeks out from the end of treatment. There's a "divot" of sorts on the back of my throat that hasn't totally healed yet and is a food trap of sorts.

I too have nerve issues from the neck dissection and that's been frustrating as exercise/therapy isn't making a difference right now. It may or may not improve.

All I can tell you Meli is be patient. There's no way to predict how our bodies react to the major invasion of cancer and treatment. I have pain meds and take them as needed (every 4-6 hours..sooner when it was really bad)to stay ahead of the pain. Rinsing with a baking soda/salt/glutamine solution 4-6 times a day helps with the mouth and tongue pain as well.

Positive thoughts and prayers

"T"

i had BOT robotic surgery for T1 and selective neck dissection on may 10--fortunately no complications--discharged from hospital after 2 nights--first week was bad and like you i had to time pain medication with eating---improved considerably the second week and was off all pain meds by end of second week and basically eating whatever i wanted---still have some numbness on right side of face and neck but doc says that will fade away---start radiation june 17

Thanks Mark & Timm. Saw the surgeon on Friday and got discharged from hospital - YAY - it's so nice to be home. He thought I'd start to turn a corner around Monday or Tuesday and I can definitely notice a slight improvement already. Still painful but at least I can see the light at the end of the tunnel.

You have all been so helpful already and I'm only 2 weeks into this whole "adventure".

Thank you.

I know being in the comfort of your own home is good for the soul. Take this time to heal and eat up while you can! Treatment is an animal one has to experience to truly understand. I could tell you all kinds of things but it's like the difference between looking at pictures of the Grand Canyon and standing on the edge. Once you're in the battle you'll see what I mean.

Treatment is brutal but you'll get through it. Use the pain and nausea meds and stay ahead of symptoms. It's much easier to keep symptoms at bay as opposed to getting them to go away once they start. No matter how much it hurts, make sure you continue to swallow through out. Speaking of meds, I started using one of those AM/PM pill organizers during treatment due to the sheer number of meds I was taking and it's really come in handy. Between the # of meds, and the narc fog /chemo brain, it really helped.

"T"