Lymphedema in Neck

[countryrosegirl]

I had Breast Cancer 5 years ago..Surgery, Chemotherapy, Radiation Therapy, followed and two years ago I had a double Mastectomy and breast Reconstruction. Last year left side of my neck started to swell..was told it may be Lymphedema,  in the meantime I've had MRI, Bone Scan, Cat Scan all rule out cancer. So I'm left with Lymphedema in my neck...but no ones knows how to treat it. The swelling is very noticeable and the area is sore.  Arm is weak. I'm really getting scared since I'm not being treated..I've seen 5 different doctors..a physical therapist ---no one knows what to do. I'm 52 years old and live in a rural area in Wa. but have seen doctors in bigger cities, I feel all alone and don't know what to do.
I've searched on the net trying to find information on Lymphedema in the neck, and have found very little. Please, can anyone give me information on what to do.

Thanks

[countryrosegirl]

I did just upload a photo showing the Lymphedema on both sides of my neck...I took the photo while looking into the mirror, but the bigger side is my left side. I've noticed that my upper back is now swelling a small bit.

[countryrosegirl]

I made a mistake in the above post...I did have one lymph node removed but it was under my arm on my right side. But nothing in the neck area.
Thanks
Mary

[countryrosegirl]

My breast cancer was on the right side, but the swelling is on the left. Sadly, we don't have anyone here that knows how to treat Lymphedema of the neck. They don't have any answers. No one understands that fact that it's in my neck..since I didn't have any treatments or lymph nodes removed, or have had an injury. Would an ultrasound do any good at looking at this area?
Thanks for answering my questions..
Mary

[Cleveland Clinic]

Dear countryrosegirl:  Lymphedema occurs when lymph nodes that drain an area have either been removed or are damaged.  That the swelling has occurred in your neck suggests that, if this is lymphedema, the lymph nodes in your lower neck above the collar bone have been damaged.  Without knowing more about your case, including the field of radiation, it is difficult to speculate on what may be happening.  Usual treatments for lymphedema often involve compression, which is easy to do on the arm but not very practical for the neck.  Our recommendation is to try to locate a lymphedema clinic somewhere in your area.  In addition, a neurologist may be helpful in evaluating the arm weakness.  Your oncologist may be able to help you do some of the networking in trying to identify the appropriate specialists.