Hello the Group.

New member here and I hope I'm in the right place! That is, my cancer is in my neck and not my mouth (squamous cell carcinoma of the lymph nodes with unknown primary). However my question today is about nerve damage, specifically to the tongue. Briefly, my second surgery to remove a second infected node was a radical neck dissection on the left side (directly after which I almost died and needed an emergency tracheotomy, but that's a story for another time...). I noticed immediately post-op that the entire left side of my tongue was numb, along with a good portion of the left side of my neck.

I'm now 5 weeks post-op, and in fact today began the first of 31 days of radiation. When I ask if and when the feeling in my tongue will return my ENT can't really say. I also asked my neurologist (who I see for an unrelated condition... isn't medicine fun?) and he said that if the feeling were to return it would be within the first month. I'm already past that... yikes. However my rad onc doc says that she's seen sensation return long after this initial period.

I'd welcome any comments from anyone out there with relevant experience. I hate to think that my tongue will be 1/2 numb for the rest of my life, however long that is. Not only does it feel weird and uncomfortable, but despite my best efforts to take care I tend to bite it during eating from time to time, and it's always in the same area! Talk about blood...

Many thanks to all of you, and I'm very glad to have found this forum.

All the Best.
David in Los Angeles

Those unknown primaries are troubling (and they suck), but you probably came to the right site. I didn't have any of the problems you're experiencing, but I might be able to chime in with something worthwhile as you go through RT. Oral cancer, if that's what you have, appears to be far less predictable than most (Non-Hodgkins Lymphoma mystifies me more than others, but this one is right up there on the phantom Non-Predictability List).

There will be patients, survivors and carers that will drop by to answer your questions or simply welcome you to this board. Dr. Joshi will chime in too and usually has exactly the right information to share or give you earlier threads to read or off-site links to follow. He's been busy lately! We're on so many different time zones that you never know who will pop up and when.

I wish you well. This is a great site with people you'll get to know and care about and who have the day-to-day info that you'll never ever ever get from your docs, no matter how prestigious the hospital or kindly/knowledgeable/whatever your docs are.

Wait till the day you finish your last rads and you're sent home with an appointment scheduled a month later. Talk about feeling insecure! You've been treated for (in your case) 31 days by people who are kind, answer your questions, take great care of you, bolt you to a table forcing you to place your life in their hands....and then they're gone. Talk about abandonment! There's a conversation going on about it right now on another thread. That's when you'll live here and get the help and/or reassurance you need. Trust me; it will happen.

Here's a little hint: in the event of the random LA earthquake that might possibly coincide with your rads treatment (hey! It can happen!) ask your techs how to get out of the damn mask when the power goes out and the alarms start blaring. They'll show you where the toggles are and how to release them so that you can get the hell out. Oddly, my paranoid questioning endeared me to them. Go figure. Caution: don't do this as a test! I'm rather easy-going and worry about circumstances far less than I should, but that trapped feeling brought out a whole new "I gotta' take responsibility for myself" meme when I realized I was totally under the control of machinery, deadly machinery at that.

Best of luck to you,

Mimi (one of The Group)

Hi and welcome

nerve damage post surgery,and post radiotherapy are pretty much a given.Recovery time of the these nerves have no real time scale.it could be a month it could be six.Rob had damage to his trigeminal nerve following his neck dissection,and after radiotherapy the nerve started to come back to life.It was the start of a terrible time for him as the pain was excruciatng,the nerves in your tongue may be permanently damaged or they may recover,i dont think there are any solid guidlines.

As for your diagnosis,one of our most loved members here had an occult primary(trevor)and it is not an unusual scenario with oral cancer for the secondaries to be diagnosed,and the primary never found,so worry not,you belong here with us.

occult primary

liz

Hello David
Welcome to the forum. Believe me, it's THE best place to be when faced with your situation. I can't put into words what we have gained from having access to the wonderful people you will find here, and the wealth of knowledge each one brings in their own way from personal experience as a 'victim' of this disease and it's consequences, from the good Dr Joshi and those members who seem to be able to track down anything and everything you ever wanted to know, from the internet, and also the carers. They are all priceless.
My husband Trevor had SCC in his neck with occult primary. It seems so hard to believe they can't find the primary. Initially I just thought it was a cop out on the part of the dr giving us Trevor's diagnosis ~ we now know better.
Trevor isn't able to post right now but I can tell you that he does have some nerve damage where he had his neck dissection, on the right side of his neck. He was just telling our son tonight that it's like an electric shock if he touches the wrong spot when shaving his few remaining whiskers! I am always nervous when putting cream on his skin in the area in case I cause him any pain. That though is the only issue he has in that regard, anything else relates to r/t ~ no saliva and still taste buds that don't seem to want to fall back into line. The latter may also be a factor from chemo, not sure.
Everything Mimi has said is so true so be sure to stay close, post away any time with any questions or issues or needs that you may have. If you have a carer, be sure they also know about the forum, it's just as important for them to have access to information and support.
Thanks Liz too for the link. Oh how well I remember chasing down all that information in those early, naive days .........
All the best David. Keep in touch and be kind to yourself
Love from Down Under
Deborah (yes, Deborah ~ I'm using Trevor's computer so that his 'picture', not mine!!)

Well.... thank you all so much for the quick and helpful replies. I'm very grateful and glad to have found such concerned, loving people. That's especially important because I live alone so I'm basically doing all this myself.

I'll look forward to further posts and will continue my perusal of all the various threads. In fact, Mimi, it was your very interesting and helpful thread about your RT experience that got me into this site in the first place. I'd spoken to someone at City of Hope here in the LA area about helical tomotherapy so my interest was piqued. I finally decided to stay with my current doctor and her IMRT machine.

Thanks again, all!

Hi David,
Welcome. I too can confirm that joining this site is the best thing you could do for advice and more so, support. I had a tumour removed from the left side of my tongue by a neck dissection and then had rt for 6 weeks. My rt finished at the end of May 08 and although I hate to say this, some 11 months on I still have numbness in part of my tongue and neck, but it has improved. Also if I touch a specific area in my jaw line I get, as Deborah said on behalf of Trev "an electric shock" feeling in my tongue, how weird is that.

My consultant has told me that everything will take time to heal and his words were "it could be one month, one year, or even longer". As a result of the rt I also have a tingling/burning sensation on the tongue which I have been told is the re-generation of the damaged nerves. I have now been put on medication for that and it has slightly improved, however, please bear in mind that my rt was directed to the tongue and I would assume that yours will be more on the neck than the mouth.

Keep us posted on how the rt is going and never be afraid to post your questions, feelings or moans, because there is always someone her to pick you up.

Take Care
Sue

Hi David
Welcome also to this fantastic site,it honestly does get very addictive because you "talk" to people who have been or are going through the same as youself and know exactly how you feel. I too had a tumour removed from the right hand side of my tongue and a neck dissection to remove the cancer from my lymph nodes.I also had R/T for 6 weeks, I'm sorry to say not a very nice experience at all.My RT was in November 2007 and I'm still having trouble with numbness in my tongue,pain in my jaw bone and yes that electric shock feeling.I can touch my chin and I can feel it in my ear!!!very verl odd feelings,those little nerves are a bit lost at the minute and need rewiring I think! Even though we are all going through our various stages we all still post on here just to get it off our chest so please,please make sure you do.

Good luck and take care for now,

Sammy x

Sue and Sammy - thanks to you both for weighing in. In fact despite the difficulties you're both facing, for which you have my good thoughts and support, your posts have in fact given me hope. Whatever sort of weirdness is in store for me I can at least take heart that the potential for sensation return is there. And that's encouraging. I guess whenever nerves are involved all bets are off.

I've noted another bit of unpleasant weirdness, which just sprang to life a couple of weeks after my surgery and remains with me: at the first bite or two of any food I experience a shooting sensation, painful in fact, through the left side of my cheek and jaw. It's akin to the pleasant anticipatory sensation one sometimes gets, which is often accompanied by a spurt or so of saliva, when about to eat something exceptionally delicious. Only my feeling is pain, not pleasure. Oh well. Perhaps this too will pass.

Meanwhile thanks so much again. You're a great bunch of people here!
David

quote:

I noticed immediately post-op that the entire left side of my tongue was numb, along with a good portion of the left side of my neck.

Specific complications of Neck Dissection

• Numbness of the tongue – the nerve that supplies sensation to the tongue, the lingual nerve, is rarely bruised. If this happens then you may experience a tingling or numb feeling
  
• Restricted tongue movement – the nerve that supplies movement to the tongue, the hypoglossal nerve, is rarely bruised. If this happens you may experience reduced movement in your tongue
  
• Numbness of the skin/neck/ear – this in most noticeable to start with and gets better over weeks to months. Areas of permanent numbness can occur
  
• Accessory nerve – this helps you move your shoulder and runs from the top of your neck to the bottom. It has lots of lymph glands lying close to it and can very often during surgery get bruised. If this happens it can stop working for several months, as a result you may experience pain and some difficulty moving your shoulder which can make shaving, combing your hair and dressing difficult. On rare occasions the nerve may be cut as the lymph glands cannot be completely removed if this does not happen, in this case the shoulder problems will be permanent
  
• Facial nerve – the branch of the nerve that makes your lower lip move can be bruised. If this happens then you may develop a crooked smile, the majority get better but may take several months

Thank you, Dr. Joshi. Guess I scored twice in the "rarely" sweepstakes (numb tongue as well as the neck and ear) and once on the "can be" (left side of my lower lip doesn't move when I smile). But I hadn't read any list like this and appreciate knowing these things. I'll continue to be hopeful about the tongue.

David

Yo, David!

How are you doing after week one? Settling in? It took me about three days to get over the fear and listen to the music, count the blips and buzzes and bleeps that the machinery makes as it hovers above and makes its way back around to the first position. Fun times.

Keep us posted. It took me a while to figure out that people going through their own crises were with me as I was going through the early stages. The kindness of strangers is overwhelming. As good people, we always knew that though...This disease is humbling.

Mimi

Mimi, thanks so much for asking. Definitely getting into the side effects from the Ride, as I call the treatment room. I hadn't expected nausea to be part of the equation I must say, but unfortunately it's been with me for nearly a week. So between that and the mouth sores I may have had my last solid meal for awhile. But got a couple of stomach meds from the doc, which keep it to a dull roar. I've also picked up a pair of small speakers for my iPod, which makes the 15+ minutes in the Funhouse each day bearable.

8 down.... 23 to go!

D.