Hello Suffering for Facial Head and neck Lymph edema I feel alone

[cinderella58]

Hi I found this board and i see there are many on here that have problems with lymphedema I have a rare thyroid cancer and had three radical neck dissections had some swelling after the second one but now have bad swellign years later hace ear inside gum and now lips I am really hoping to find others to talk with as I am sure you all no have painful in can be is there anyone else out there with this even my eye and i have tried therapy but it was diagnosed late and has fibroisis i guess just looking for someone to talk with effects my balance looking for life with lymphedema thank you

[HerDotness]

Cinderella, if you're working with a lymphedema therapist, ask him/her about laser treatments.

My therapist just told me that a lym-ther at the main med center's cancer treatment unit is having good success with face and neck lymphedema responding to the recently approved laser treatments. In fact, she told me that this therapist is reporting that people suffering from chronic dry mouth as a result of radiation scarring are finding that use of the laser inside their mouths stimulates saliva production.

Certainly worth asking about if someone near where you live might be doing laser treatments. Maybe even your own lym-ther. Mine just completed a course of training and is currently using the laser to break up some scar tissue that apparently formed from this staph infection I just had. Both of us could notice a difference in how the area felt. It wasn't gone by any means but seemed to be much less solid than before she "zapped" it with the laser.

I'll get three more treatments, and then, she said regular home care will likely be enough to reduce the scarring as much as can be.

[HerDotness]

An update: My lym-ther told me today that she'll give me only one more laser treatment. She prefers to use the laser minimally, she said, since therapists are still mapping results and the longterm effects aren't clear at this point.

Maybe I'm foolishly philosophical, but at nearly 63 I've lived a pretty long life already, so I figure that a degree of caution with the use of such relatively new treatments leaves a level of risk I'm willing to take.

If I were twenty years younger or had children and grandchildren, I might not be so willing to take chances.

I think what a person does or does not wish to do is a highly individual decision that ought not be influenced too much by what others recommend or choose to do.

[HerDotness]

I have no idea what I said that would suggest I've given up.

Good grief! I was simply being philosophical about the fact that being over 60 is a pretty lengthy lifetime which renders me a little more willing to take risks where medical treatments are concerned than I might be were my circumstances substantially different.

You're correct about one thing: That was very much unsolicited advice. And frankly, it has no relevance at all to my attitude or my current situation.

[AnneR]

HerDotness, I hope you will forgive another unsolicited comment, which incidentally most of these are. Earlier you said, "I think what a person does or does not wish to do is a highly individual decision that ought not be influenced too much by what others recommend or choose to do."

I am thinking that your response to the caring encouragement from ProudParents may result in your not being bothered so much by other recommendations from people who are experiencing similar circumstances. These forums are so helpful and supportive. I look forward to hearing from anyone else who takes the time to share information and encouragement, including you.

I hope you can find the treatment option you are lookig for and will let us know how it turns out. I understand what you meant about taking responsibility for making those decisions about the risks you take. I would suppose the doctor you saw might be taking into consideration the "do no harm" pledge that doctors take.