A few weeks ago I posted some questions having to do with the swelling I have been having with my right jaw and neck. I received a response with was quite helpful, but need additional information. To explain my situation a little clearer, I had 60 lymph nodes removed in April of 2010 and had 30 low level radiation treatments with ended on Aug 17th 2010. I was doing ok and regained much of my taste, however just 2 weeks ago my right jaw and neck above the incision mark from the neck dissection has swollen a lot and became very hard to the touch. It has limited how much I am able to open my mouth. (Only 1/2") which makes it impossible to eat. My doctor tells me in about 6 weeks from now I will be amazed with how better I will be. That all it is, is tissue healing from the radiation and that my voice will be back to what is was prior to surgery and my mouth with open wide like before. So basically he says the swelling is the reason for these things. Is this true? I am banking on it and really looking forward to 6 weeks from now. I need to get back to work, and back into society again. If anyone has any advice or knowledge of this please let me know and thank you for taking the time to read this.

Also I have been doing some research and have found that possibly the Fentanyl patch that I am on could possibly be the cause for the swelling... I am curious to know if any of you have any knowledge of this?

Somebody? Anybody? lol

Hi,
Gordon was on the Fentanyl patch for 4 months, and I don't recall him having any swelling because of it. Everyone reacts differently to medications, so it's hard to say.

The swelling in his face and neck didn't start until a few weeks after treatment ended and was definitely lymphedema. He also had (and still has) swelling above his incision, as well as his jowls and front of the neck. It does feel hard to the touch.

Did your Dr. mention the word lymphedema or give you any exercises to stretch your jaw muscles? Gordon's surgeon just told him to practice opening his mouth as wide as possible several times a day, but his situation isn't as bad as yours.

I've had TMJ, and my physio. gave me a similar exercise, but with the tip of the tongue held behind the upper front teeth, then relax and open the lower jaw as much as possible, maintaining contact between the tongue and the upper teeth (does that make sense?). Apparently this causes less stress to the muscles.

If you don't get satisfactory answers from your Dr., ask for a 2nd opinion. We found we didn't really get a lot of help or answers from any of the doctors after treatment was over.
Anne

Im not aware of the fentanyl patch causing swelling. I used it for several months without any problems.

As to your limited mouth opening. I have trismus which is basically lockjaw. Its not possible for me to open wider than 1/2 an inch max and thats without teeth. It is possible to eat with such a small mouth opening. Of course its not easy. Close attention must be paid to this problem and exercises need to be done or it will tighten up more and get worse.

I always check for posts that have been unanswered. Im sorry I didnt see this til now. Maybe by you posting again it didnt show as an unanswered post.

Hope you feel better very soon.

Mparks

I'm not a doctor but it sounds to me like you have both lymphedema & Trismus both very common side effects of radiation and neck dissections. I've had them both.
Click on the link here to OCF's explanations and read them
What is Trismus
Lymphedema-OCF
My entire medical team (RO,MO, ENT, Prothodontist & speech therapists) all warned me that after radiation, if I did not do jaw stretching exercises, I would not be able to open my mouth much. I have had great results using the Therabite device after my neck dissection and swelling, but just the basic jaw exercises worked the first time around. Why not call him and ask about stretching exercises?
I used the Fentanyl patches for a couple of months two separate times and never had any swelling nor have I read any OCF posts of the patches causing swelling.
I'm three years out from the first diagnosis and I still need to use my Therabite or my mouth closes up. I really hope your doctor is right about six months clearing it all up, but again, I'd call him or visit him with OCF printouts and ask about stretching exercises and lymph massage.
Charm

Thank you everyone for your suggestion and great advice and experiences. I am sorry to be so impatient for info, but as you can imagine I am a bit frightened about all of this. I thought the worst was in the past. I was even getting my sense of taste back! It is very hard to eat. I have lost 15 lbs in the past couple weeks. (Down to 138 lbs - I am 5'10") Since I have posted this I have emailed both my Radiation Oncologist and ENT. (awaiting response) I am hoping and praying that this is just from the swelling in my neck and will go away with time. I pray it's neither Trismus or Lymphedema. I am already under incredible amounts of stress due to fighting with my employer for continued coverage of health benefits and need to return to work cause the $$ has run out. That is neither here nor there, right now I am just overwhelmed and scared.
Thank you all for your well wishes.

I'd ask the doctor for a referral to a PT that deals with lymphedema and trismus. Massage helps the fluids find new paths to drain in and exercises and intra and extra oral massage helped with trismus. I got a great guy here in NJ if anyone needs a referral but that is not going to help you.

Take care,
Eileen

I still get some swelling (Seems to be a little weather based as well, especially when it gets cooler and damp outside). As Eileen staes a lot can be massaged out. I had a therapist give me exercises for both the swelling and the Trismus. I would question the pain with the doctors though. Best wishes...
Steve

Hi. Sound like you might have Trimus and lymphadema. I would call your surgeon and see if they have a physical therapist they recommend firths lympodema. Also ask them if they recommend a speech therapist. They are able to giveyou excersises for your mouth to stretch it out. My sister goes to both since 4 weeks post op. Keep us posted.

Thanks for all the good suggestions! I did contact my doctor and he said not to worry it is just the long term effects of radiation and to be patient. It will go away in about 6 weeks slowly. He also said it was not necessary to see a speech therapist. My Radiation Oncologist said to massage and use a hot compress. I have an old Homedics massager that works pretty well with heat lights that acts as a heat compress. Since use I have noticed the swelling going down slowly and my mouth opening wider. I am hoping I will see better results each day. Thank you all for all your great advice!