Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Eric, You fail to mention that besides the Neck disecction, you also had a RT Mandiblectomy w fibular free flap. I doubt many of the side effects you are complaining about are all due to the ND unless someone really screwed it up.
I have had two of these, one left and one right. I have no side effects on the one on the left. I had a neuroma from the one on the right side that caused me to have sensitivity to the ear, but that was a screw up on the surgeons part.
I suspect your loss of movement in the tongue and lip are not from a ND but from the other surgery you had. While some people do get neck cramps, I've never heard anyone exhibit your complaints from a ND. People, however, do complain about loss of function in their shoulder and arm. Whether this happens depends on what quadrants the surgeon removes and what muscles he had to cut.
While I'm with David in not doing unnecessary surgery, in some cases a ND is necessary. In my case, I had mets to one side of my neck with an occult primary. Radiation might have got it all, but I wasn't going to take the chance. Most people do not have the all the side effects you describe.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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