cott01 Posted May 25, 2010 Share Posted May 25, 2010 Its been a while since I posted. I update the sig line. It's been so busy these passed few months. Mom finally came home 1/12/10 - she was doing good with physical therapy. Got her from a wheel chair to a walker. Seems like we are plateauing though. She began about a month ago - not being to see right - everything is fuzzy. Her gains with rehab have halted. The pain where the tumor was (back) and her center chest where the lymph nodes were (surgeon couldnt even get to them - but they were ned on the last scan) is back almost as bad as before. She is miserable though. She said she hates this and wishes we would have let her go. She is smoking again...but she feels better that way so I guess its ok. She says her skin hurts - like to just touch...feels like a really bad sunburn (any suggestions?) Anyways - we are fighting, one day at a time right. The last scan she was NED which is great....no disease but all the symptoms are still there - not sure if thats a good thing. Right now she is not being treated with anything except for pain meds. Do you guys have any suggestions? Do we go along with this and see what happens? Quote Link to comment Share on other sites More sharing options...
jaminkw Posted May 25, 2010 Share Posted May 25, 2010 Oh my, I am so sorry about this turn of events. Sounds like your Mom has lost her will to fight. She may feel the inner ear problem doesn't explain her range of symptoms so she sees no relief in sight beyond the pain meds. That would discourage anyone. I don't know what choice you have but to go with it and see what happens. That is unless you want to find another doctor or doctors for another opinion. Even then, it would mean getting Mom's consent. Good luck and keep us posted. Judy in KW Quote Link to comment Share on other sites More sharing options...
Joppette Posted May 25, 2010 Share Posted May 25, 2010 Hi. This must be so confusing for everyone, and frustrating. Chronic pain can wear anyone down, and cause depression too. I wouldn't handle that well either. I hope things improve. Don't really have any advice. Pain is there for a reason, and I guess I'd be hounding the doctors, or at least get her into a pain clinic for evaluation. I wouldn't know what else to do. I hope things improve for Mom. Judy in MI Quote Link to comment Share on other sites More sharing options...
Katy66 Posted May 25, 2010 Share Posted May 25, 2010 My husband complains of his skin hurting all the time, particularly in the area that was radiated. The onc has him on Lyrica right now and that seems to help. His must be nerve damage so I'm not sure if that would help your Mom or not. Sorry you all are going through this. Quote Link to comment Share on other sites More sharing options...
cott01 Posted May 26, 2010 Author Share Posted May 26, 2010 She has an appt tomorrow with a rehab specialist that is going to try to relieve some symptoms. Her ENT said not to expect much - although his dx was a plain ole vestibular hypofunction. It just seems like all of the doctors are like well whatever....its "this" or its "that" like it doesnt matter. Even her surgeon said "well you know its going to come back". It's like jeez - anyways. I just cant help but think that when we got home 1/12/10 - things were awesome....even by Feb she was walking aroudn the table outside without the walker. She was going to the salon....etc with no oxygen. Now - not so much. She is walking with the walker but slowly. She gets nauseated sporatically, the blurry vision is terrible, vertigo, brain fog. Anyway - thanks for "listening"...I can just hope its something simple with an easy fix...right? Quote Link to comment Share on other sites More sharing options...
fillise Posted May 27, 2010 Share Posted May 27, 2010 I'm so sorry your mom is having such a rough time. Perhaps you can ask about the Lyrica and see if it might give your mom some relief. Doctor's defeatest attitude doesn't help. Sheesh. Susan Quote Link to comment Share on other sites More sharing options...
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