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Trismus, neck pain, tooth pain, jaw pain, vocal chord paralis, trach tube

CindyPayne's picture
Posts: 1
Joined: Jun 2012

Hi Everyone
I am new here. I had all my cancer treatments in the Summer of 2002 everything has been downhill since then.
I have severe neck and jaw pain that no DR listens to. I have severe trismus and I have vocal chord paralis and because of that I have a trach tube.
I have a horrible voice that people cannot understand, i can barely eat food, my teeth are in bad shape.
I just do not know what to do anymore, I am very depressed and do a lot of drinking because of it. I feel like noone else in the world is going thru what I am.
Having no voice and not being able to open jaw or eat, or really kiss someone just sucks!!!!

Pam M's picture
Pam M
Posts: 2196
Joined: Nov 2009

Sorry to hear you're being challenged so much.

Please know that you're not alone in your trial. There are folks here who suffer in much the same ways you are suffering.

I'm one of the lucky ones, I think. Of all your issues, the teeth is the only one I have. My voice is altered, and "off" at times, but it's almost always very easy to understand me when I speak - I sound normal to people the vast majority of the time. No trismus, can eat most foods, no trach needed.

Unfortunately, there are many who aren't as lucky as I've been. Sorry you're in that group.

Do you have any local cancer support groups? Here, we have Cancer Support Community - it was Wellness Center, then teamed up with Gilda's Club. It helped me to see, in person, people who had been through cancer treatment (or were in the process of going through treatment). Some days I just wanted to SEE that I wasn't the only one.

I HATE to hear that your situation has led you to drinking a lot. It's very very common for people who've gone through "our" treatment to have problems with depression. Have your doctors talked with you about that? We have many people on this site who have been greatly helped by anti depressants. I can say it's easy for me to not drink a lot - the damage from the rads makes it painful for me to drink hard liquor, so I don't.

If folks see your post, I'm sure you'll be surprised by how many people here have struggled with serious depression - to me, it's easy to understand the prevalence among people "like us".

I also am glad that you're giving this community a chance to reach out to you - as I'm sure you've already seen, there are wonderful people here - they really helped me on my cancer journey, and would be happy to help you as well. Keep posting.

Greend's picture
Posts: 678
Joined: Feb 2010

There are a couple of us who have and are going through the same thing. Doc told me that if these problems are going to happen they will usulayy occur around the 7-8 year point following treatments I have 100% of the same problems and spent $thousands to find out what caused it and also that there is not a lot that can be done. I was treated in 1996 and lost feeling in my chin in 2008, voice and back pins in 2009 and then finally had to get a Peg because I was losing weight and had pneumonia form aspiration food four times in nine months.

I can't remember the last time I was able to order through a Drive Through Window at any fast food place.

Yes it does suck but it is the hand we have been dealt and I hate that anyone has to go through this after beating cancer.


jim and i's picture
jim and i
Posts: 1788
Joined: May 2011

So sorry to hear about the pain you are suffering. You are in my prayers.

Deb bie

Posts: 1914
Joined: May 2012

I am so sorry for what you're going through. Damn cancer...I stopped rad 11 sessions into 33, because #1 it was preventative...optional...#2 lost my voice for two months due to severe reaction to rad. I had horrible teeth before surgery, opted to get them all pulled same day as resection. Wasn't wisest choice but thought then why not. I too have horrible pain thru jaw and neck and on gabapentin..300mg 3x a day. Is helping some but not for the lymphedema I have. Also on valium...and good pain meds. Make your doctors listen, or find a new one ! It's ok to fire a doctor, been there done that. And I too on days have depression, think it goes with the territory ! My advice on this is to find something you enjoy. I use candles, and music on bad days...on good days I go outside, I bought myself two hanging flower baskets. Don't give into this please...you're not alone. Vent whenever possible, but surround yourself with positive thoughts and people ! Tons of hugs and warm thoughts are sent your way ! Katie

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