After a frustrating 6 weeks of trying to figure out what was causing the fairly sudden fatigue (extreme!) headache, sudden vomiting (with little warning and no nausea), and "tinnitus" in her ears, hydrocephalus was finally diagnosed about 2 weeks ago. She was admitted to the hospital and lumbar puncture was done once her inr was at an acceptable level. Opening pressure 25/26. Nearly immediate relief of most symptoms after removal of some csf. Lab results stated "not particularly cellular but contains few atypical cells suspicious for malignancy". No meningeal enhancement on contrast MRI done 2 weeks ago or done yesterday (7/9). Lp repeated to obtain another sample (results of that test were same as the first--"few atypical cells...") 4 days after the first (opening pressure 12-13). She was dismissed from the hospital on 7/3 in pretty good condition. Began to see changes in gait and steadiness on Saturday. Vomiting returned on Sunday night and she had a fall (despite using a walker) overnight that night. By Monday she was very confused (repeating questions over and over, etc) and she became too weak to walk so we began using a wheelchair. Lumbar puncture was repeated again (opening pressure 27-28) on 7/9 as well as MRI. Relief of some symptoms again with lp (vomiting and h/a are gone) but she is still repeating questions and becomes quite dizzy with very little movement. She was admitted (at family request) to the hospital where we await the arrival of her neurosurgeon to discuss possible shunt. Oncologist is highly suspicious of leptomeningeal carcinomatosis but cannot get tests to show anything. At this point we are willing to risk the shunt spreading POSSIBLE cells contained in the csf because we can't allow this misery to continue for her. She does not seem interested in cranialspinal radiation at this point and it doesn't seem the doctors are willing to do it anyway unless they have a CLEAR test result. Is there anything else we should be doing?
Thu, 07/10/2014 - 06:51#1
Stage IV nsclc recurring hydrocephalus - 1264840