Hi All.
It's been a while since I have posted about my mom, sometimes I am afraid to even do so as it makes it more real for me. I know it's crazy, but, just feel overwhelmed at times.
Overall, I think she is doing ok. Her speech has improved, she is understood by many, as long as her tongue is not swollen.
She has lost more weight. This has me concerned, but am feeling more concerned by her choking. She doesn't have a lot of phlegm in and around her mouth like in the beginning. She seems to have issues with the saliva--which she has a lot of!! good job doc!--when she goes to swallow somoetimes it doesn't go through the right track, she said it goes down her breathing track--windpipe? is that even a correct term? the doctor today,not her usual ones at HUP, the ones that work locally with the lymphedema therapist, said that she could develop pneumonia easily. She constanly is complaining about ear pain--clicking...I'm thinking tmj and partoid? I have no clue. My mind can't stop and get a grip yet. I called the office,so used to being told all info can be released to me, this office has no signatures yet-YET! My mom is quite upset because her RO was never plannning on the neck dissection, he wanted to used rt there. Supposedly all the issues she is currently having are related to the neck dissection.
I'm all over. sorry. I should probably wait this out a bit but am scared, can't think of what to ask or waht to expect.
Also--they were considering using the tens unit on her neck?
Help please!!

Donna,

I'm so sorry your mom is still having problems swallowing. Just to help with terminology-the "breathing track" or windpipe is the trachea--the one that carries food to the stomach is the esophagus. There are all sorts of reasons why she might be not able to swallow her saliva and have it go down the right way. It could be sensory nerve damage so she doesn't reflexively swallow when she should because she doesn't feel it there. It could be damage to the epiglottis or the muscles that move it around (I still don't really udnerstand entirely how that works I don't think).

I don't know about the ear pain or the "clicking"-that is probably something she should get looked at for its own reasons. It doesn't sound like it is necessarilly related to the swallowing problems.

Have they given her a FEEST test? This is a test that will test her sensory nerves in her throat to see if she is feeling when things are in a place where she needs to swallow. Some people do lose their sensation and they are always at risk of inhaling stuff because they won't feel it and cough like most of us do.

Did they suggest any exercises? If the muscles are the problem there is an exercise called the Shaker exercise that has been shown in good solid research to really dramatically improve her swallowing.

Is she being seen by a speech pathologist with some expertise in people who have had oral cancer, surgery and radiation? If not, she should be and if you aren't getting the answers you need about WHY she's having swallowing problems it might be worth getting a second opinion. I do know of a speech pathologist in Boston who's specialty is treating OC patients who end up with swallowing disorders. If you ever think you might want a seocnd opinion, I can give you her name although it may take a while to get into see her.

Nelie

Donna:

Its nice to see you back on the board. Im really sorry your mom is having problems. Im sorry but I dont have any magical advice for you. Just wanted to give you some moral support. Hang in there.

Hello Nelie and Christine,

Nelie-
Mom is being treated at a local hospital, an up and coming CCC, don't think they are there just yet--but I do have quite a bit of confidence in them--her therapists so far. I think what will happen will be that her RO and quite possibly the MO will be called in, and they will request that she see the speech path at HUP. I just explained the same to her and she is just so tired of everything....she's exhausted.
I should have gone with her today but will attend on Friday. She said that she thinks she is ok, they want her to use a tens unit. I can't give anymore info than that because I wasn't there.
I do see her have sifficulty swallowing food and sometimes drink. She had issues prior to dx with swallowing food--she and my dad said it was always due to nerves... I always felt differently. I know today they did the barium test, not sure of the other. I made a huge error in not going with her. I am trying to get myself back on track, and hoping to make her see that she is quite capable of handling this alone....she has been and has been doing holding up fairly well so far. The one thing she constantly forgets is to call and ask for a pain script to be sent out. I was reading the pm you sent me a few weeks back and was wondering if maybe she is experiencing something similar to what you are.
Christine--nice to hear from you!! How are you feeling? You have totally blown me away with your strength and the ability to take care of yourself and your boys....you are amazing!

I just called her RO's office, looks like I will be driving to Philly tomorrow! Maybe we'll take the train, less expensive.
I am so frightened. her weight loss alone scared me, now this, which I shouldn't be surprised by. Thankful that it was recognized. I hate that we never know what is coming next--this goes for everyone here.

oops....going to philly for the pain meds

It is good to have someone come with you for any kind of swallowing test because when you are the one doing the swallowing, you can't see the screen but someone with you can and sometimes the people doiung the test give a really rushed explanation afterwards. And the whole process of swallowing is actually pretty complex with a lot of places where things can go wrong too. I'm still not sure I really understand all the nuances thought I've been tryong to educate myself because of my own problems--and I say this as someone who is usually a pretty fast learner. But I know you can't go with your mom everywhere for everything. Hang in there, Donna, you are doing so much for her. I know it has been hard on you too. I still am kind of astonished they wouldn't give her exercises.

Nelie

Nelie,
I just spoke with her again, they have given her new exercises, Shaker being one of them. She's still a bit confused, guess we'll find out more on Friday...or as she remembers it. Frustrating but life as we are living it! She said to tell you thank you again for sharing what you have been going through.

She is very welcome. I hate to see anyone else going through the same thing. I don't blame her for being confused either. I was confused about what they were telling me about my swallowing for quite a while (but that was partly because they were actually confused because the radiologist hadn't noticed my stricture).

Anyway, I am actually curious to find out what the tens unit thing is about. Maybe something new to try that could help me too. I hope you can post after you go Friday with any new info. you have (though I know you have a lot of other demands on your time!) By the way, if she does the Shaker exercise right, it is pretty hard. It's kind of like sit-ups for your neck. Encourage her to stick with it.

Nelie