Hi nicki

I had the same back in 2017 and my tongue still tingles, not painful either but like ive burnt it on hot food

Hope everything is healing well and that the rest of your treatment goes well. Its tough but you will get through it

Nat :) 

How long did your swelling take to go down and  yeh mine is tingling loads atm. I had my surgery 5 weeks ago I’m hell of a jumpy worrying over everything I still have to undergo radiotherapy yet , did you have that? 

5 weeks and swelling is still there my talking isn’t that great but I’ve lost a significant part of my tongue and lymph nodes my only concern is  there’s swelling and tingling around the site where the tumour was. 

The tumor on my tongue was very small so thats probably why my recovery was a lot quicker. Do you have any appointments coming up so you can mention your concerns and they can check the healing.

I didnt have my neck dissection at the same time as my tongue op as was given the all clear after tongue op then they found it had spread to my lymph nodes 3 months later after a check up so maybe that could be another reason yours is taking longer to heal.

Hi Nicki

i had a partial glossectomy and free flap reconstruction, plus neck dissection on 11th June. I’m now one third way of the way through radiotherapy. It had not spread to my lymph nodes so RT is to my tongue only.

my surgeon told me the tingly tongue at the point where they cut is nerve regeneration and I believe it can last a long time. Most of the swelling went down over the course of a few days and weeks, but they also said the flap will continue to reduce in size for months, as the skin becomes thinner. Did you have a reconstruction too?

selinz 

My husband is due to have partial glossectomy, neck dissection and reconstruction from his arm in a few weeks, would really like to chat with anyone who has had the same operation to let me know how you now are and anything you can say to help me get my husband through this, he is so worried. Thank you 

Hi,

Wishing him luck I am sure he is in excellent hands to get him through surgery.

My dad is going through the same procedure next month. Would like to know if anyone knows what the recovery process is like and how much has it impacted on speech and eating.

I had this operation in December speech is fine but I struggle with the s sound

Sorry for my slow reply, I missed this. Has he had the surgery yet? The first few days and weeks were tough. I had radiotherapy after which definitely set back my recovery by several months. However my speech was about 80% normal once the swelling had gone down, and 90% within a few months. 19 months or so post surgery it's about 97% normal.

As for eating, I was on a liquid diet for a few weeks post surgery, and then post RT finishing, and then it slowly returned to normal. Now it's 95% - I can eat pretty much whatever I want, but spicy foods are more spicy (that's due to the RT), and certain foods I need to eat a bit more consciously - eg salad. I also eat more slowly - but that's not a bad thing!

It was tough at the time but there are no long term effects that I would say impact my quality of life. 

Thanks for your reply [@irate]‍ . That's great to hear you had no problems with speech.

Would you be able to share your experience of the post-recovery and anything which help the recovery process. We are very anxious as my father is 85 and feel his recovery might be slow. 

I had a partial glossectomy (small tumour no reconstruction from arm muscle needed) with sentinal node biopsy in June 2020. The sentinal node biopsy showed up 3 positive nodes so had neck dissection as second op in July followed by radiotherepy Augist/Septebmber. 

Recovery from the surgery was not too bad at all. I had ice cream  within a couple of ours of waking up from the op, liquid diet for a few weeks - lots of homemade soup helped - then soft diet for a few weeks more eating was close to back to normal by the time the radiotherepy started.

Recovery  from radiotherepy was much tougher - started to have a really unpleasent taste in my mouth from about half way through which made food taste unpleasent lost quite a lot of weight, (was overweight before so not all bad) and eating very difficult for for latter half of radiotherepy treatment and about six weeks after - subsisted for a while mainly on hospital prescribed ensure drinks (mixed with coffee and suger helped with taste for me). had a feeding tube for a couple of weeks at the end of the radiotherpy - was quite opposed to the idea of  this beforehand but it was very temporary and actually really helped me.

Now, 4 and a half months after the end of radiotherepy I can eat and drink pretty much anything  though still can't really tolerate spicy food. 

Speech for me was close to back to normal by the time the radiotherepy started but them went backwards during ratiotherepy,  but is now close to back to normal again. The speech therepy and dietician team are a really important supportive part of the process following their advice and exercises to stretch mouth and tongue and preserve swallowing function are really important  s, l and r sounds were the ones i found most difficult -

I think recovery time probably  does depend  on the amount of the tongue they need to remove though mine was small and didn't need a reconstruction from arm muscle - I guess if the tumour is larger, recovery will probablly take longer. It  can feel really frustrating at times, communication and eating are such basic things to have impacted - and i do remember moments - particularly after the radiotherepy - of wondering if things would ever improve - but looking back now where i am 4 months after radiotherpy is a whole world better than where I was just a couple of months ago. 

Wishing your father best luck for the operation.

Hi thanks for your the response my husband had the op on Wednesday (17 hrs ) as the flap would t take fourth attempt it went ok, chest infection Friday and then Monday flap failed and had to have the op again and part of his breast used, he is still in ICU because of chest infection . It has been a horrendous week and he has been poorly, I have everything crossed he turns the corner soon he is so fed up.  It helps reading that you are ok because at the moment I am so worried 

Hi thanks for your the response my husband had the op on Wednesday (17 hrs ) as the flap would t take fourth attempt it went ok, chest infection Friday and then Monday flap failed and had to have the op again and part of his breast used, he is still in ICU because of chest infection . It has been a horrendous week and he has been poorly, I have everything crossed he turns the corner soon he is so fed up.  It helps reading that you are ok because at the moment I am so worried 

Hi - very new and this is my first post as my partial glossectomy and neck disection is this Thursday - gulp.

It's really heartening to be able to read about other experiences so I've half an idea what to expect.

Apparently my treatment plan is going to be really aggressive so I have one question - 

How long after surgery and getting home do they start the chemo/radiotherapy?

M husband has turned the corner and should be home soon. The operation part hasn't been the problem it has been pneumonia.  We won't know about radiotherapy until we get the results from pathology but have everything crossed he doesn't require it. My husband has been in hospital for 13 days now but that's because he's had two operations.

Mine was about five weeks

Hi Martin

They will start no later than 6 weeks, but they'll want to give you a few weeks for healing before they start and likely want to see the results of pathology. 
 

dejavu

glad to hear your husband is on the mend. RT was very painful but the surgery was by far the worst part for me.

I had full reconstruction in April 2021 and had to go back for chemo and radiation in Jun and July.  Although a significant part of the swelling has gone down, when I talk or eat, it aggrevates my new flap and the flap/tongue swells up.  It makes talking difficult because it feels like there is a ping pong ball in my mouth.  My the end of the day, after having done limited talking and eating 3 to 5 feels, my tongue is very swollen.  My guess is the tip of my tongue is sensitive and it rubs on the back of my lower front teeth.  Has anyone experienced anything similar?  Thanks.

Hi All - finished my chemo/radiotherapy in May. Stopped eating mid April due to the radiotherapy and didn't start eating again until early July so I was chained to the tube feeding pump for 16 to 20 hours per day and still lost 41kgs! (Every cloud as I was 130kg on the day of my operation!

Anyway - nearly 11 months out now, eating as much as possible and as much variety as possible, struggle with meat and salad, too dry plus they took alot of my molars out too.

Some days I can swallow well other days struggle to swallow my tablets but other than that back to work full time, speech 97% and so conscious of how much more I talk now. Still can't roll my Rrrs (my spanish isn't that good anymore!) and have to concentrate on some words but most people I speak with don't even realise what I had to have done and my work mates just call me Frankenstein now (due to my scar from ear to ear) so all good.

There's a whole life to live out there - let's go and get it!

Bring on 2022 - Happy New Year all - we made it!

Very good Martin, excited for you.  I would die for a slice of pizza or a hamburger :-)

I can swallow and chew but I can't eat that way.  I have to puree everything in a blender.  My tongue has no feeling right now so it doesn't know where the food is to roll it around my molars or to push it to the back of my mouth to swallow. 

My tongue tingles so I hope this means sensation is coming back.  I also lost my saliva glands and there's a 50/50 chance they recover.  If I could chew, I could still use water to help get it down.

I lost 20 lbs but never had to go on a feeding tube.  I have put 10 lbs back on so far.  Speech is still difficult with the swelling.  It starts off good at the beginning of the day but deteriorates as the day progresses and the swelling sets in.  I am very optimistic this will correct with time.

All the best! 

Slowly slowly my friend. The recovery is a horrible journey with new experiences. My salivary glands played absolute havoc - horrible!, but seems to have settled now, I kept getting thrush on my tongue too in the first 6 months but that's all part of it.

My graft (they took it from my arm) is on the very back of my tongue and down to the root and because of the lack of sensation I don't know where the food is in my mouth so it's confusing when to swallow and unless I concentrate hard on eating I sometimes choke but I guess that's all part of adapting to new ways of eating. I guess if I had pureed food it would be different but I'm too inpatient! Plenty of custard and ice cream is what my dietician wanted me to eat! I crave butter on everything because of the salty taste - lovely.

I speak to someone who is 11 years out, only on the phone though, but her speech is perfect and she says as long as she has lots of gravy or sauce on her pasta then she's fine.

The one BIG thing that this experience has taught me is patience. Its major stuff we've had to put our bodies through (I smoked for 36 years so it was my turn to pay!) but it will recover but unfortunately it takes time.

I'm in Spain at the moment and eating most things that I throw at myself, full english this morning, it's cold by the time I've finished but I would have not even have contemplated that three months ago.

It will come, as I say, not a nice journey but set yourself small goals and look back at the progress you've made - you'll get there - soon.

Always remember we're the lucky one's - I keep putting my foot in it when asking people I haven't seen for a while 'How's........?' - I've also learned that everyone makes it so I for one, will be making the very most of it.

Keep going, bit by bit and hopefully this will be a blot in our history.

Catch me on WhatsApp if you fancy a proper chat?

Hi 

I had a partial glasstomy and neck surgery 3 weeks tomorrow. I'm awaiting results this coming Tuesday on lymph nodes. 

Can I ask how long was your tongue swollen for and how long did it take before you could eat normal food to a certain extent??

I'm hoping I don't need further treatment

Hi - first of all - be proud of yourself - you may well have come through a traumatic time so well done .

If you allow me to elaborate on my surgery please as it may add some context on recovery.

My surgery was 14 hours, bilateral neck disection (literary cut front ear to ear - no pun) tounge dropped out through my neck, next to my larynx, directed and rebuilt from  free flap from my left inner forearm and then put back together. Plus they took eight teeth out - mostly from the upper jaw.

I was on the ward for three weeks until they released me and all the drains and tracheostomy has been removed with and I hadn't been allowed to eat or drink for those three weeks, then nothing to eat for another three weeks so they sent me home with a liquid food pump and gallons of twocal to feed myself via my nj tube.

Had to have a swallow test to ensure if I ate I wasn't going to be a danger to myself which, thankfully, was OK - milestone one achieved!

Was given the OK to start eating again, lots of yogurt, lots of soup, custard - basically anything to get my strength back, supplement the twocal and get strong again and heal from the aggressive surgery.

Had a couple of weeks on the soft diet then got bored, my gums had healed and the ENT & plastics team were really pleased with the way my graft had taken so move on to solid food!!!

I was eating everything from a bowl of cereal right through to pret tuna baguette & even a nasty old macdonalds cheese burger - just because I could.

My SaLT therapist told me that I was  'hard core' and doing well, I'd lost 9kg in those 8 weeks which I was glad about and could afford to do so too so all good all round.

Things were healing well (apart from my trachy hole) but was told that was normal.

Words of wisdom - my neck aches, especially at night and been told that this is 'me' now! OK - I thought all part of the adaptation, after all I'm still lucky enough to be standing up and facing forward.

What I want to say is - keep up and keep going with your neck physio - super important.

I started my follow up chemo/radiotherapy about this time last year, 30 daily sessions!

At the end of week two I started to notice the effects of the radio and had to back off on the solid food and then my body just said NO. Didn't even want anything in my mouth, even water, thereafter until August time where it was very very slowly back to what ever I could tolerate, which was not alot, dieticians were telling me off, but I was listening to my body and not some grad who had not even a hint of personally experiencing what we've been through bit they do their very best to help with whatever they can - lost a total of 41kg up until September last year (from Feb before my op).

Lots of changes in my mouth and throat from the radio - secretions were horrible horrible but hey that was then. By Nov/Dec start eating again what I could and wanting to eat too. Actually ate Christmas Dinner too and also my taste had started to come back.

Now I'm just off to eat my shears pie, loads of garlic, horseradish and mash - three months ago I couldn't have eaten the horseradish and still can't eat anything spicy but maybe that will come back one day too.