2.5 yrs out and experiencing side effects

The lymphedema is caused by damage to your neck, or more accurately is [at least some of] the damage to your neck, and was caused by the radiation.  The toasted lymph nodes don't process fluid as before, and it accumulates, leading to swelling, periodic cramping, at least on my neck.  I would see some form of doc, tho I don't know if you need a specialist.  My oncols and ENT aren't big treaters of tissue damage, tho very good in the tumor department.  They are sympathetic but not particularly useful on the problem. 

My youngest is an ER doc, useful but not sympathetic, and he says it's just a permanent problem I need to learn to live with.   I wear neck gators and scarfs, and find keeping my neck warm reduces the tightening.   Mine cycles between accumulating fluid and draining.  There are massage therapists/PTs that specialize in neck lymphedema, mine gave me a sheet on technique for promoting drainage.  Be careful when massaging your neck, the touch is almost like a light paint brush, very light, harder only worsens the problem.  You basically want to drain the nodes below the neck so the fluid will drain down to the now empty lower nodes.   You now have a semi-manual lymphatic system.

Agree with others above.  Did you have a neck dissection?  The radiation itself can certainly impact the lymphatics in your neck...but for me it was the neck dissection and the removal of those lymph nodes that caused my spasming and cramping and general wierd numbness/tingliness in my left neck.  The answer for me was PT...the more I stretch and move my neck the better it feels...

Just wondering if you had a neck dissection.  If not, then my similar symptoms are due to the rads and not the surgery.  I just assumed the tightening up and cramping was normal and is something we have to live with.

Sorry you're going through a tough patch.  Do what the others recommended. 

Hello, I am so sorry to see you go through this. But like others, if you can afford it, I say go to lymphatics massage expert or at least start c PT familiar c head and neck damage by radiation. The nasty thing about lymphedema is that it can become ' bumpy' and firm or hard, and from everything I have learned on this wicked journey, it needs to be attended to before that ( so as not to become permanent). You are very brave but as I see all the comments, I hope you feel less alone. 

AnotherSurvivor said:

The lymphedema is caused by

The lymphedema is caused by damage to your neck, or more accurately is [at least some of] the damage to your neck, and was caused by the radiation.  The toasted lymph nodes don't process fluid as before, and it accumulates, leading to swelling, periodic cramping, at least on my neck.  I would see some form of doc, tho I don't know if you need a specialist.  My oncols and ENT aren't big treaters of tissue damage, tho very good in the tumor department.  They are sympathetic but not particularly useful on the problem. 

My youngest is an ER doc, useful but not sympathetic, and he says it's just a permanent problem I need to learn to live with.   I wear neck gators and scarfs, and find keeping my neck warm reduces the tightening.   Mine cycles between accumulating fluid and draining.  There are massage therapists/PTs that specialize in neck lymphedema, mine gave me a sheet on technique for promoting drainage.  Be careful when massaging your neck, the touch is almost like a light paint brush, very light, harder only worsens the problem.  You basically want to drain the nodes below the neck so the fluid will drain down to the now empty lower nodes.   You now have a semi-manual lymphatic system.

I had lymphedema also. I had massage therapy from a specialist and they showed my wife how to do it. After 3 months i dont have any edema to deal with. You should try it.

My biggest problem is saliva that is like glue at night. Any ideas anyone?