Is there going to be a new 'normal' for me, following TORS and neck dissection?

Hi ClumberGirl1c67da and welcome to our little group 

ClumberGirl1c67da said:

Will any of it grow back?

I’m afraid not but honestly the body heals really well given time. There are many people here who have recovered well from dissection so hopefully you’ll get a reply soon. 
How has your swallowing been impacted? If you’ve been given any exercises I’d do them religiously. If you haven’t it might be a good idea to ask. 

ClumberGirl1c67da said:

So many people are saying 'be kind to yourself', 'it's early days'.

They are spot on. You have had major surgery. Fingers crossed you don’t need any further treatment. 
Stay with us. Lots of help here. 

Hi Dani,
I had a feeling I was being ridiculous. But there was a little bit of me that was clinging on to the hope that every day it would heal a little bit more, and the holes would get smaller, and smaller, until Ta-Daa! Nothing to see here

Sorry I thought you meant all the tissue would grow back. 
If you have holes there they will get smaller and heal over. The space at the back of your throat will look different and likely larger. 
I had RT to the back of my tongue and my pharynx on the left. I have lost a lot of the tongue muscle and my tongue at the back is baby smooth. BUT my swallow is fine. My oncologist was surprised but there you go. I have a little pocket at the back where food like crispy apple or carrot can get stuck after I’ve swallowed and I can’t feel it so I have to be careful with the next mouthful in case I breathe in a bit of stuck food. 
So don’t worry. You’ll be amazed at how well you’ll heal and I’m again sorry I gave you the wrong impression. I just misunderstood what you meant. 

Hello ClumberGirl I am going to repeat ‘early days’ and certainly regards neck dissection; just keep exercising very gently and massaging, again gently, I used and still do Bio Oil - you will perhaps have slight difference in feeling around the neck, shoulder and ear long term but honestly you will get to the stage of not even noticing it.  I personally didn’t have physiotherapy treatment, be patient.  All best wishes.

June 

Hi

I am 3 weeks post neck dissection and extended tonsillectomy surgery and I can honestly say, I’m pleasantly surprised at just how well I’m doing. As I had to have 2 surgeries, my surgeon warned me that when I looked into my mouth, because he’d had to go in twice, the holes would look massive. He wasn’t wrong, but they’ve grown smaller and are now my new normal.
I still have numbness on my neck, chin and ear, but find it doesn’t really impact on my daily life, other than feeling rather strange.
I agree that you should be kind to yourself. Take each day as it comes and keep congratulating yourself on coming through your surgery and hopefully ridding yourself of this horrible disease

I wish you a speedy recovery and a positive outcome . 

Hi there and welcome from me too.

I can't comment on your surgery, as my OH had a different procedure, but he did have bilateral neck dissections.

He's lost a lot of mobility in both shoulders and his neck, and still suffers a fair bit of pain when overstretching.  I was worried but a kind poster here suggested I ask about his accessory nerve, which I did.  I was told it was still intact but had taken a fair old battering during surgery, hence his restricted movement.  His NHS physiotherapist is brilliant and we attend regular sessions and do exercises at home.  I also do massages every day for him in the affected areas.  The improvements are slowly beginning to show, and with time and patience, we're hoping he'll eventually be able to take up driving again.

There's no quick fix but perseverance and following advice from your medical advisors should get you there.

Hugs xxx

Hi

i had the same surgery July 2024. I wasn’t warned about the amount of tissue being removed and it was quite a shock!  The holes gradually filled in as everything healed and there’s a lot of scar tissue - the back of my throat is now a tiny hole.

I had numbness from ear to chin and down to my chest, and a mandible palsy. It righted itself but took at least 6 months and I continued to see improvements for a year. I found some online exercises. 

food and eating.  I saw big improvements in eating at around 2 months. I still eat slowly but can eat everything. Has your taste been affected? My taste started to return at about 2 months but was quite impacted. You have lost taste buds that won’t grow back. I couldn’t detect sweet flavours which impacted how everything tasted. My surgeon suspects that was damage to nerves in my tongue  but that has also improved and feels pretty normal now.

Fingers crossed for the pathology results .

Hi

Not many of us on here who have had Tors. I had small cell carcinoma in my tonsil bed, ( tonsils  removed as a child) . I had neck dissection  first, 47 nodes removed  all clear and week after had tors surgery  to remove tumour. 26th march this year.Unfortunately  I did suffer a major haemorrhage 2 days after surgery  and  was rushed to theatre  during the night. I had bipolar diathermy to my palatte and  tongue. I must admit when I could eventually open my mouth to see inside  I was shocked at the hole but it has healed and closed up alot. I can no longer see back of throat and been told this is probably  the new me.

I had some eye pain for a while but it did clear.  I have small patch of skin by my chin that  is completely  numb still, so think that  might stay like it now. I'm having some speech issues but mainly  because my voice sounds different. I'm now back to eating pretty much most things,  some bits need helping down with water.

There is light at the end of the tunnel. I work in a school and am starting back in Sept. Just part time at first.

Just keep thinking positive. Nice to have a tors warrior on here.

Sorry it should say ear pain not eye!!

Thank you, June. Bio oil is on the shopping list!