Newly diagnosed and unsure of treatment

Hi Yorkshire Newbie 
I’ve put this same reply in the larynx cancer forum

This one here is busier so it’s probably best to stay here 

Sorry you are in this fix but welcome here. 

Ask for a referral to Vin Paleri at the Marsden. He has pioneered partial laryngectomy surgery. An operation was even  featured on “Surgeons a chance for life “ on the tele. 

Stay with us. There are lots of people here to help you. 

Good evening, Yorkshire Newbie, this must be what a total  " a total laryngectomy" means, as I have not heard of a partial laryngectomy and was not offered it back in 2010. You are right, having a Laryngectomy does not mean you can't enjoy your life, im still the same person, and as you say, we just get on with our lives, it just takes a bit of time to adapt and accept the new way of life. I hope you manage to meet someone who has had a partial laryngectomy. Take care.

                                                                   Chris 

Hi Chris.  I watched Super Surgeons last night and a partial laryngectomy was performed at the Royal Marsden.  It was an interesting watch but my OH gave it a swerve as it was a bit too close to home.

He had a TL almost eight months ago but it's proving debilitating, mainly in his neck and shoulders due to nerve damage, probably caused by the neck dissections.  His physio doesn't feel he'll ever get full function back so driving's a no no for the foreseeable.

He's not had a TEP and practice with his electrolarynx was first disrupted by RT after effects and now lymphoedema flare ups.  It's difficult finding the 'sweet spot' beneath fluid filled glands.

It doesn't sound great, but we're inching forward and hoping for future improvements.  The main thing is he's still here and we're very grateful to his super surgeon.

Best wishes, Gill xx 

Good evening Gill, i had the same with my neck and shoulder but after time it all returned back to normal with no pain or restrictions, i suppose it took about a year to recover from the neck dissection maybe you could ask if there is any physiotherapy exercises to help. I did have a TEP( speech valve) to begin with but it never worked due to damage from operations /treatment beforehand and the electrolarynx worked but there were certain letters i could not do so both me and my speech therapist decided it was not worth carrying on. I must admit there are some brilliant electrolarynx users out there so tell him to persevere and hopefully it will all come together. All the best.

                                                Chris x

Oh thank you for your reply Chris,  and that's encouraging to know about your mobility returning.  The amount of cringing and wincing at physio sessions is alarming considering the pain he went through after surgery...or maybe it's a man thing..?  Lol.

Now even pre surgery, he never expressed a wish for a TEP.  I think it was really the thought of more dabbling in his stoma area and knowing it would have to be replaced every three months or so.  It's just as well really as thick mucous is still problematic and would have been forever clogging it up.  It wouldn't have bothered me, as I do all his care, but he is keen to make progress with his EL once the lymphoedema calms down.  I don't think he's as bothered about that as he should be - he's enjoying the massages I provide a bit too much!

You've been on quite a journey Chris, and an inspirational guy xxx

Hello Gill

if it’s any help, I couldn’t raise my right arm for some months after a neck dissection, albeit for a different cancer.  I was warned that this was a possibility, but would be temporary.  I had physiotherapy which while it eased the problem a bit, wasn’t doing a great deal for it.   And then, inexplicably, one day I reached instinctively for something in a kitchen cupboard and did so with no difficulty or pain.  Can’t explain it, but I’m not complaining!  I’ve had no problems since.

Wishing you and OH well

Liz

Hi there Liz and thank you so much for letting me know about your experience.

My fella has got a little better reach in his left arm but its his right shoulder where he gets the most pain and struggles to lift that arm even half way.  It's really frustrating.

He also has a lot of difficulty with head movements and has to twist the top half of his body to look each way.  It's like his head's been locked!

Anyway, as his carer I go everywhere with him and can see he puts in more effort with his physios than he does at home.  He's basically lazy and I've warned him to think again if he wants to drive in the future.  I admit I've mollycoddled him but my Nurse Ratched head will be on with a vengeance from now on.  There'll be some tough talking tomorrow.

Thanks for putting up with my grumbling Liz and you take good care.  Hugs xxx

Hi Gill

I know nothing about a laryngectomy, but on the subject of nerve damage post dissection I do.  I had some after my second dissection and with the help of physio it did get better to the point of not noticing the issue at around the 18 month point.  Time is a great healer so tell him to persevere and hopefully he will get movement back in time.  It is likely the accessory nerve that was damaged during the dissection.  It may be worth asking your surgeon if it was just moved or cut.  Moving it bruises it and I found mine took those 18 months to recover.  Cutting is obviously a more permanent issue.

Hi there Peter and thank you so much for sharing.

Well, he's halfway there in terms of your recovery period, so that's come as reassurance too.  I'm very patient, knowing these things can't be rushed, but I shall definitely ask his team, at next week's appointment, about the accessory nerve's potential damage.  I don't have access to his surgeon but all his notes will be on the system.

Once again, thank you for the heads up and you take good care xxx

Hi Peter.

A big thank you for your advice to ask if my OH's accessory nerve was damaged during his surgery.  He had his six weekly clinic this morning, so I asked his CNS to bring up his notes on their system to check.  She did and informed us that the nerve had been left intact.  Although he may not regain full mobility in his neck area, there's a good chance his shoulders will improve over time.  Of course, it's up to him to keep up with his exercises but I'll be cracking my virtual whip to make sure he does, or else!

I had a good read about that pesky nerve this afternoon and, not unlike your convoluted journey, its impact on various body parts, from head to waist, is long and complex.

Once again, thank you as you've renewed our hope that, with perseverance, he can regain some good mobility in the future.

Take care, Gill xx