Hi there, this is my first post although I have been reading others for a while and found them very useful.

My background - I am 30, female, Irish, but living in Luxembourg since 2001. I had tongue cancer last year.

I was very relieved to find this site a few months back as it explains everything clearly in english. As many of the healthcare professionals I am dealing with communicate with me through french (one of the working languages here in Luxembourg but not my first language), every now and then I get a little confused as to what exactly is going on/what the exact terms are for the treatment/condition. It also proved more than a bit awkward after the initial surgery when I had difficulty speaking and did not have a great level of french. Thankfully my french has improved in leaps and bounds since then, especially my medical vocabulary!

My treatment story:
In Jan 06 I had a small cancer on the left side of the tongue and had 1/3 of the tongue removed, plus nodes from both sides of the neck which luckily turned out to be negative. I had the surgery here in Luxembourg as the facilities are great, medical care is heavily subsidised by the state and I didn't have any private health insurance (I do now!)

After some worrying results from follow up checks I was advised to have brachitherapy (can't spell it but means radioactive implants in the tongue), which I had for a week in France in April 06. Apart from the nasty initial reaction and recovery period (2 months), all was well and I went back to work.

I then developed another ulcer in the same place in November 06. This was the lowest point for me as I had to wait a few weeks for a second opinion, some tests and finally confirmation of what it was. I became quite stressed as I had a good idea of what I might have to go through if it were cancerous. It was definitely a case of knowing too much!

Luckily it was only a normal ulcer that couldn't heal itself, so now I am having HBO treatment. I am at session 15 of 50 to 60. I can see some improvement already, and am very pleased to have a treatment that doesn't make me feel ill.

My question is about numbness in the neck after surgery. At the moment I have very little feeling between the two scar lines (most of the front of my throat is numb). I know its a very small issue ideed but I was wondering if anyone knows if it improve further or will it stay like this? My doctor seems to think its as good as its going to get.

Redser, We are on the same time frame, apparently, I am facing my recurrence from my first tongue surgery a year ago. So I am only a year out, as you are. My neck is slowly beginning to regain feeling, but is still numb in spots, and is "tingly" up under the ear and along the jawline on the surgical side. I understand that it continues to improve as the years go by and the nerve endings re-knit, but as to whether it is ever back to where it was before surgery?
Don't know that one!

Andrea

Irish, welcome. Glad you found this place. It sounds like you've had quite an ordeal in the last short while.

I had my surgery this past June, and the Doctors are confident that the numbness that I have from the neck dissection is permanent. I wouldn't expect a big improvment, although you may see some. It's impossible to perform surgery without some degree of superficial nerve damage,and that's just part of the whole experience
Wayne

My docs told me that the neck numbness was likely permanent, too.

Clint

Hi Redser,

I have a nice hockey stick scar on my neck from just below the ear which curves down below my jaw on the right side. It took a little over a year for the numbness and tingling to go away. Every once in a while it returns but is not permanent for me.

My doctor told me alot of how numb I would be depended on how they had to move the nerves around during the modified neck disection to remove the lymph nodes, etc. Obviously, my doctor was very careful and my body adapted quite well since it is not permanet. As usual though, your milage may very since we are all very different.

Jim

Eilish,

It's hard to know for sure whether more feeling will come back (as you can see from some of the previous posts). There are some similarities between your diagnosis and treatment and what I had (although I had 34 conventional radiation treatments in between surgery and brachytherapy).

I can't remember for sure how long it took for the numbness and tingling to go away in my neck -- I do know it was a matter of years, not months. However, I did get to the point where ALL of the sensation returned in my neck and jaw area. Today when I feel anywhere around my scar, it is no different than what it was years ago pre-surgery.

Cathy

Hi All,

My jaw is still numb. I am just about 4 years out!

Sure am glad to be alive!

Take it easy.

Peace and love
Robert

I can't address neck surgery, but I did have hernia surgery in the '60s during which they apparently severed a nerve in my abdomen/hip, leaving a rectangular area of about six square inches on my hip without feeling -- I don't recall how many years it took, but maybe ten years later, I noticed I had regained feeling in the affected area.

Also, some years ago I managed to pour some burning gasoline on my leg and ankle (Long story but for the record, I do NOT recommend this to anyone for any reason <grinz>) and it affected my ankle -- If I remained standing for any length of time, I would get an unpleasant tingling in the area -- Again, after 6-8 years, I noticed that the nerves or whatever had appeared to recover.

It is strange how we are all told different results to expect by the Docs for essentially the same problems. I had right side neck dissection on 9/20/06 as part of my treatment and have a 3" scar that starts just below my right ear and runs along jaw line toward the throat. I still have numbness in the immediate area and my ENT who did the surgery says the numbness can last for "up to a year". The only time I deal with it is when shaving and is quite a freaky sensation.

Bill D.

Hi Redser,

Sorry you had to go through this, especailly at such a young age.

I'm almost 2 years out from similar surgery to yours, but only one side of the neck was dissected. I too, feel that permanently being numb is a small price to pay for being alive.

Count your blessings and good luck and good health.

Jerry

I am one year out and my surgeon said to "give it a year." I am still numb in most of the area of my ND, but I swear that it seems to be continuing to slowly get better. I am pretty well accustomed to it now. The feeling in my chin is perfectly normal now, though my jawline is a little numb. I don't even notice it. It was my ear that bothered me tremendously, and it is 95% normal now. It had felt like it was the size of an elephant's ear and made of cardboard. It was numb, but it hurt to touch it....very odd! I also had numbness in my lips that has, thankfully, gone away. A girl needs to kiss and wear lipstick, both of which were difficult!!

Thanks everyone for your responses.

I do realise its only a small thing, and I am very grateful not to have major problems, I was just interested to hear other people's experiences.

I am also hopeful that the HBO treatment for my tongue will also work to speed up recovery in the neck area. Will keep you posted as to results.

Eilish

There are no small things or unimportant questions. Yes, the issue of numbness in not life-threatening, but it is a quality-or-life issue and you should not apologize for asking about it. Keep asking!