1 year after Radical neck dissection

Hi

  Not sure how to classify what I had, let's just say, HPV Tonsil cancer with 2 local recurrences, all told, radiation, dissection, chemo, dissection, and Keytruda for almost 10 months. Parts of tongue, base of mouth, tonsil area, jaw bone, lymph nodes, all one sidebut all surgically altered in some way. Rebuilt , this time, with quad. 10 months clear after last surgery with clean margins. Actually doing , knock on wood, really well, still PEG tube for majority of calories. Here's my question, hard to explain cause it seems contradictory, but, as I move further away, is it possible that as I regenerate some nerves, could my awareness of NOT having any feeling in most of that area actually be becoming more heightened. Almost as though I'm the last month I'm becoming more aware of that, after the dentist, lack of sensation. Seems strange, but, wondering what others felt as they moved away from a very large surgical procedure. Really lost a lot of mobility in that shoulder and definately a change in the scapular bone structure, very bone back there now. If this is all they trade off for a LONG future, so be it. I'm guessing cause everyone is different, and no two surgeries the same, there is no pamphlet for exactly what to expect. Also wonder if I'll go through phases- sometimes more aware, sometimes less?!! Also, FYI- had a fistula after my first surgery and a carotid blow out a month later but survived, I guess that's about a 3% chance?! And , had Hodgkins in 2001. Evidently whatever genetic soup I inherited doesn't like a strong immune system. Thanks, if anyone has ling term post surgery comments.

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    Well Bromant Welcome

    To the CSN H & N forum. The club nobody really wanted to be in. From reading your post it looks like you have had quite your share of this cancer, surgery, and medical stuff. I am not sure exactly how to answer your question but to say I had a radical neck dissection on the left side last year in September. I have numbness from around the base of the neck up to part of my ear about 2-3 inches wide. So that is about 8 months ago and the numbness has not changed I don't think and if it did it was very little. I don't expect it to change as I figger there were some nerves cut in the effort to rid me of cancer. I also lost a lot of mobility in that shoulder  and some muscle was removed in the operation. On that side, my left shoulder has a definite leaning down. I guess only time will tell if things are going to change but it will be a slow process if at all. Like you say there are trade-offs for living longer and these are some of them. If you want to read my story (Takes too much space to put it here) or anyone else's or write your story in your my CSN Space just click on the persons name in the posting, their name at the left and it will take you to their personal CSN page. Also, you may want to check out the Superthread at the top of the page as there are loads of information there and you may find something helpful. Take Care-God Bless

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    Nice Attitude

    It is refreshing to read your post.  With all you've been through your positive attitude comes shining through.  Maybe that has something to do with your recovery.  I had a radical right neck dissection and the only bad part was my right arm was in constant pain for about a year.  My doc stretched a nerve and it takes time for it to go back the way it was.  My neck is also numb but that doesn't bother me at all.  Just need to be careful shaving.

    We hope your rough days are over and wish you the best in your recovery.  It's a rough road and you're doing it nicely.  My case pales compared to yours.

    Happy Fathers Day if it applies.