Is it a cold infection or just healing - Oral Cancer Support

I am seeking some direction I know nobody is a doctor on this site but with the experience the collective might as well be...I had a bilateral neck disection done...for those of you familiar with my posts....I am not sure if I am just getting feeling back or if there is something wrong...I am leaning towards an infection cause I have had a fever for the past few days little energy and the swelling under my jaw seems quite tight..together with my tongue seems swollen...I seem to have a bit of a cold...I was told it was quite normal to feel like you are being choked with this surgery so I kinda ignored it now that the tighness seems to have increased like I said I don't know if I am just getting feeling back or if the swelling is worse...have no real mirrors and am just going by what I am feeling and touch...my family is not a great help cause they say they can't tell if there is a difference ...I have a bit of phlem and headaches...I see my nurse tomorrow morning...and if the swelling has not decreased or I still feel like I am being choked I am calling the doctor's office who did the surgery...I may have to take a trip to London unless this is normal part of healing...I am such a darn anxious person afraid of throat closing off in my sleep....If I felt my husband would be able to drive tonite we would be on our way..I feel like my skin is stretched to it's limit and even into my chest (just below the surgery)...They have been packing my incision so maybe they will be able to tell..but they say things are healing fine...I don't know why I am writing on here I guess fear and axiousness...like I said don't know if the swelling is moving up my face or if I am just getting feeling back...this is so confusing...I was actually feeling better coping with the pain...I can still move my neck fairly well side to side left and right...am feeling chin...anyway I am not sure so gonna ask nurse in am...thanks I am just having a hard time sleeping and am scared...

d lady,

Hang in there; morning will come and you can speak with your nurse. I know the dark thoughts come flying at you in the wee hours of the morning. Try, as best you can, to rest; even if you can't sleep. I'll keep you in good thoughts and prayers.

Tim

Thank you for your support I know it is late and not alot I can do...I am going to try to sleep ...and thanks for the kind words...I am just a very anxious person and truly hoping that this is normal..but short of being a doctor or having this surgery done before I rely on my friends and here and my doctors..so thanks for the pep talk...

Dianne

Dianne, don't you agree that the late hours are the ones that are the scariest? We feel that help is farther away, so we worry more. Relax and concentrate on your breathing. I'll bet that it is just fine, and that air is passing through your nose and throat as always.

You neck is definitely healing, and as it does, the skin is adhering to the tissue beneath it. That skin was lifted during the dissection, and if it didn't stick back down and heal, you would have a huge problem. The issue with this healing is that as it heals, it is also forming scar tissue, and at some point....and you need to ask your surgeon, but do it now....you need to massage your neck to keep the skin from healing down too tightly...to break up some of the scar tissue and keep that skin healed but pliable at the same time.

they almost forgot to tell me to do this massaging, and I would have been left with that feeling of being choked....forever, I guess.

So....relax and breathe.....and go to sleep. You will wake up if there is any problem....and tomorrow, ask about the tightness of the skin and when you should begin to massage it, and ask how to do it. I still massage mine every night when I put on night-time moisturizer...because I remember how it felt to feel like I was being strangled by my own skin!

My dr. told me to be pretty vigorous ..."really get after it." It made me nervous, and now, except for the scar which is more obvious than some I have heard about, and the obvious loss of tissue on that one side, my skin is normal.

This is in the same category of asking when to exercise your jaw....left too long, it will also scar down and will forever be restricted in its opening. I exercise mine several times each day.

You will be fine, and I'm glad you have an appointment tomorrow. TALK and ASK QUESTIONS.

XO

XOX

sorry for the double-posting....Somebody is welcome to delete the second one. XO

Thank you nobody has mentioned massaging and I think I remember reading it a few times but didn't know what it is all about.. It just feels like my skin is stretched to the max. I have put a call into the nurse practictioner...I don't have an appointment today but I have the house nurse coming in and like I said have called the cancer center and left a message...It did feel better after I got my husband to rub the back of my neck and shoulders...I thought infection cause of the fevers and the colds going around the house. My tongue feels thicker am talking worse I don't know am waiting for nurse to call back
I wouldn't call it an emergency I am still breathing but don't want it to get worse...to see my doctor over an hour and a half away....
Dianne

Dianne,

I hope your spirits are brighter this morning. Everything seems so "dark" in the dark and silence of the night. Let us know what you find out. (I know you will.) I'll be thinking of you today.

Lani

Well she called back that was quick...She decided to make an appointment for me with the surgeon on wed am at 8:45 I am so grateful although it will mean leaving the house by about 7:00 am...at least an hour and a half to get there...She just wants to make sure all is good but the massaging is helping and stretching...And everyone is right it seems to happen later in the day when everything is closed this started up early in the evening sunday to the point I felt I was choking knowing full well I wasn't ...after I read about the massaging well that helped a bit plus it felt good took pain killers and ativan and went to bed..I am so thankful I got in to see this busy man..and well just hope all is well I am concerned about some things and they will answer I just hope my swollen tongue isn't cancer again so soon and I am still deathly afraid of the radiation treatements although so many before me have been fine

Thanks everyone
Dianne

Wow what amazing advice the massaging was I am getting the back of my neck and shoulders above the surgery and below. Now I just have to get up enough to massage around the incision...and the actual site so working down..from cheeks down to chin from behind the ear down the neck. It is feeling sooo much better...I still have the fevers and the cold but I do not feel like I did Sunday nite. My tongue still feels thicker...I just read about thinning of the free flap I guess I will have to ask my doctor on that one and a few more things...I feel kinda stupid now but will be relieved to know things are well...in my mouth and chin is it coming along ok well I hate to waste professional's time if I am just paranoid but when I called monday there was definate trouble...but massaging seemed to help..but the nurse kinda noticed an off colour in my packing too so...I just want the doctors to take me serious when and if something happens...

Thanks for the advice it helped...

Part of my follow-up care from the UW Med Center was physical therapy -- Lymphedema massage, to move the lymph fluid buildup to past the now-missing nodes to other nodes in armpits -- Also to 'mobilize' the scars and make them looser -- I can see and feel results.

My problem right now is that the neck scarring (quite hard) is pulling my head down and forward, causing some middle back pain, plus fluid in my mouth tends to run forward and interfere with speech (If I am not careful, I will develop an annoying habit of sucking air in the right side of mouth to clear fluid!).

Therapist said to put hand on collar bones and hold all tissue while I stretch my chin up. Also, if you swivel head to side as far as it will go and then try to look even further, your head will turn a bit more.

Dianne

Hope you are feeling better.

Thanks all and am feeling ok but always on the anxious side have concerns..

Pete I am gonna mention the massage to my dr tomorrow...my homecare nurse also wrote a note recommending massage and a few other items as in pain control...meds ext....also noted a couple of white spots in my mouth which could easily be from eating and stitches coming out... fingers are crossed...she also noted that the dressing coming out of my packed incision is an odd color...so I think she has covered everything I was concerned about including temp and I don't have a sore throat anymore more side of neck like glandular pain into ear..

well must try to get sleep now as up early to travel to my doc and they made an appointment at 8:45 am...need to leave here by 6:30 or so... take care and good nite

Dianne

Keep an eye on the white spots. I recently had a couple spots which was thrush. Dont know if you ever had that before but it moves so fast and makes your mouth pretty sore. Might wanna get it checked out tomorrow.

Hi......A friend of mine had spots in her mouth and was very concerned..she went to an ENT doctor and here it was Thrush. I believe he gave her a prescription for some kind of mouthwash. Good luck---

The mouthwash is Nystatin. Have them make the suger free kind.

Pete D. You should be massaging the scar also so it doesn't tighten up. Massage across it. I also used Biafine, the cream I used for radiation burns on the scar. It is a deep wound healing cream with Vitamin E. It cannot be used on an open wound. Talk to your PT about massaging scar.

Take care,
Eileen

Thanks folks and I did all of what you suggested today the white spot is fine doc thinks everything is ok...go back nov 17 and will recheck spot thinking it is from eating...tightness is normal healing and I must do more of the phscio...as far as massage when I go back we will check into it more but in the mean time can massage back shoulders whereever no incisions
He also understood the pain medicine needed and more prerscribed. So as far as the fever and such we are just keepng an eye on it. I actually think they were glad to see me and that I am doing so well ...this eased my mind...Thanks Eileen I am going to check into that cream hopefully can get in canada...but the doctor said not to massage leave it for a bit but what harm could putting cream on it do? Thinking....hmmm no different than putting on pysiderm...

Anyway thanks

Dianne

Diane,

Well, that's a big WHEW! I had a recurrance scare about a week before I found this site and I was truly terrified. Doc told me it wasn't cancer and I was OK and I hugged him and cried like a baby. I know how relieved you're feeling right now. Cloud nine is a pretty nice place to hang out.

Lani

You got that right Lani...I was nervous and even though he said it was ok until this spot is gone I will be on guard....There is still so much I am learning...

cloud nine does have a nice view!!!

Dianne

Yeah Dianne !!!!!!

So happy to hear you are doing well. Time to celebrate

[quote=Eileen]Pete D. You should be massaging the scar also so it doesn't tighten up. Massage across it. I also used Biafine, the cream I used for radiation burns on the scar. It is a deep wound healing cream with Vitamin E. It cannot be used on an open wound. Talk to your PT about massaging scar.

Take care,
Eileen [/quote]
The PT has given me clear instructions not only about massaging the scars but also about massaging the lymph nodes to which they now must drain and how to move the lymphatic fluids to the nodes. Plus shoulder rotation and deep breathing to loosen it all up.

The funny thing about this is my pt has never had a case like mine before and has asked collegues about how to deal with it and she mentioned something about massage and doc says wait till it heals totally then discuss some of those methods but continue other stretches and such...my pt is so intrigued by my surgery and how to help me...which I think is a good thing cause she is excited when she figures out or finds out something new...she said I make her job interesting and more challenging...

The Biafine cream is a presciption drug so you will have to get script from doctor. I don't remember for certain when I started PT after surgery. I think it was 2 months after first surgery because first surgeon didn't think to send me there and one month after second surgery because I had gotten smarter by then. Obviously wait until your doctor says OK and don't use creams until you OK them with him.

Take care,
Eileen

Thanks and yeah I am listening to dr he has the bottom line but I find to loosen up some of the muscles to rub them in small circles helps alot...I also do not go near the incision cause of fear of infection but where I can I manipulate the muscle a bit and do mean a bit cause I don't have very strong hands or fingers due to previous conditions and surgeries so all I can do is just to make the stretch work or ease some of the pressure I am hoping that dr can arrange and we can figure out how to get massaging covered....

Dianne

My first PT session was two months and four days after surgery -- My PT had to bone up on Lymphedema Massage techniques to be sure she was remembering it all correctly (She was!). It's primarily in use after mastectomies.

BTW, loosening the scars (mine are really bad because of the prior radiation) is called 'mobilizing'.

Well something I hope will be done cause my incision is really tight especially when I go out in the cold all the muscles around the surgery area just contract. My doctor said to wait until next appointment and we will look into it ...not sure that pt is covered...I am hoping even if I have to go to the hospital..My right side hurts more than left around the trach site and under the incision is well one huge knot...I know it has only been less than 2 months but people are working after a neck dissection in a shorter time period than I am still working at getting the swelling down...I know every one is different but I am getting impatient...Still have a smile though and really do understand the reality...just like to blow off a little steam...I am so grateful that so far no radiation or further surgery has been needed...I have a fairly good range of motion...but still a lot of swelling...and dam it couldn't avoid for sure the cold going around the house despite my excessive wiping and washing of hands and spraying air I am still sick :((

I am very impressed with the way massage helps well with any injury...so if it isn't covered I will have to learn real fast

Your enthusiam shines thru like a light. I luv happy people like you. It makes the days so much easier. I have a tight problem where they did the dissection, especially in the mornings. I rub in circles too and it does help.

Thanks for your encouragement and kind words... I actually went to work today a fill in for about 4 hrs Gosh did that feel great I actually felt like a part of the real world again although some customers kinda looked at me funny when I talked until I explain about surgery and my regulars well lots of smiles and hugs... it actually helped the stiffness and but now at night it is tightening up again I guess I will have to stay in perpetual motion for this not to knot up...I am fighting this cold with every thing that I have...not sure how I will react to chest cold at this point...so wish me luck... going to bed and try to get some sleep now...