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Contemplating 2nd Jaw Surgery

Viilik70
Posts: 52
Joined: May 2012

Help me out here, I've had a trach and feeding tube from my last go round with NPC and don't have a trach or feeding tube anymore. I need to finish the jaw surgery by getting the bone out of the back of the leg, but I'm just dreading waking up again with a trach, feeding tube, catherder and a sore leg and jaw. My jaws currently don't line up we'll enough to get my food chewed up well which compounds my swallowing troubles so if I had my jaw fixed I could eat a ton more. Is it worth it because this seems like another long road and I'm also dreading all the pain meds and getting back off of them. I'm desperately seeking advice because I'm scared to death to do this again!!! I trust God 100% and know He will get me through anything just trying to do the right thing. Is it also just vanity on my part??? Thank you in advance for your help : )

MarineE5
Posts: 721
Joined: Dec 2005

Viilik70,

I probably have more questions then answers for you, but here goes. How old are you and how long do you think you may live? If you say 30 years, do you wish to continue chewing the way you do now?

I know what you mean about having to do this again, when I heard the words " You have cancer" for the 2nd time, it hit me harder then the 1st time. Different cancer, but one year after I thought I had been thru enough, I guessed wrong. Long story short, I had another operation, some reconstruction on my face, no jaw involved, but still, drain tubes etc. I was lucky as I caught it early like I did the Base of Tongue cancer I had the prior year. Yes, it is a rough road, no getting around that, only you can make the decision as to what hurt you can withstand. If the odds are very good that everything will align and you can chew your food without difficulty, then it may be worth it in the long run for you.

You will do what you think is right for you, at the right time for you, one way or the other.

My Best to You and Everyone Here

Viilik70
Posts: 52
Joined: May 2012

I'm a 43 yr old dad of 4 Kids and I hope I live another 20 years, but I don't think that will be the case since my MO won't pull my port. I was just wanting to get to a somewhat normal life and that is why I pulled the feeding tube and the trach our. Just wanted to feel normal again and now I want to eat more than mush... Thank you for you'r reply and God bless!

 

john j

longtermsurvivor's picture
longtermsurvivor
Posts: 1723
Joined: Mar 2010

In some ways my situation is similar to yours.  I have been radiated twice, and went through  one of those long surgeries, complete with grafting to rebuild the floor of my mouth.  I'm now  a year and a half out from my last rads.  The combination of treatments may well have cured my cancer.  But fibrosis is proving to be quite a problem.  I don't eat solid food at all any more.  Some mush, as you say.  Most of my diet is ensure or other blended products.  To me, it is an inconvenience, not a source of real angst.  I can only speak for myself, not for anyone else.  But if someone told me another 14 hour surgery and the lengthy recovery would POSSIBLY allow me to eat more normally again, I would pass on the surgery and just go on with my otherwise good  life.  These surgeries are a big deal, and  the results are never guaranteed to solve the problems you raised in your post.  That's worth remembering.  Whatever you decide, I  wish you the best.

 

Pat

fishmanpa's picture
fishmanpa
Posts: 1069
Joined: Jan 2013

Hi Viilik,

No one here can truly answer your question but we can offer an opinion. Surgery, whether it be minor or in this case major, is not pleasent. Having gone through three prior to treatment, they were rough for sure. However, I healed quickly compared to the side effects of treatment. For me personally, the worst part of all of this was having my eating compromised. I was very fortunate that I never lost my taste buds but it was a couple of months before I could eat solid food and my swallowing is still compromised to this day.

If I had to endure another few weeks of discomfort to enjoy food again, I would do it in a second! It's just an added bonus that it would straighten out your jaw from a cosmetic aspect.  

Positive thoughts and prayers

"T"

PS.. you pulled you PEG and trach out on your own?  duuuude! If you could do that you could endure a little cut and slice ;)

 

hwt's picture
hwt
Posts: 1655
Joined: Jun 2012

My initial surgery was in my lower jaw so I have been down the road of replacement with my fibula. Surgery was 19 hours then 4 days in a preplanned induced coma, 2 weeks ICU. It wasn't near as hard on me as my family. I really only recall the last 2 days. My leg wound had to be dressed daily. I went from walker to cane and no issues at all now. The 1st 9 months, I felt like I had a bag of nickels hanging on my jaw. That has gone away. All said and done, my jaw did not line up perfectly even though I kept my hinges. I encourage you to look into the option of dental implants or a very good set of dentures by a specialist as an alternative before selecting surgery. I only had a trach while I was in the hospital. Today, I eat normal food and swallow perfectly. I can't open my mouth as wide as I used to so small bites. Sandwiches cut with knife & fork. Good luck with your decision. 

Viilik70
Posts: 52
Joined: May 2012

I was reading up on what to expect from surgery, but man you just scared the pants right off of me, but that is what I wanted was some feed back from someone that did it NOT some Dr that can only give you a fraction of the story because they've never lived through it! I appreciate your reply so much : ) so much we do with this stuff we normally have to just jump in and hope for the best and hope that we make the right decisions because we are the one that have to live with them. Thank you all for your replies because they all help a ton just knowing that we are not the only ones going through this crazy stuff...thank you all and God bless!!

Viilik70
Posts: 52
Joined: May 2012

Lol! My feeding tube would just come out on it's own sometimes when the balloon deflated, but I did have one with the flange on it one time and when the Dr pulled it out felt like someone punched me in the gut! My trach I pulled out all the the rough part it's laying there having the Dr cut the bad skin around it away and then sewing it up. You know we've all had our share of crazy stuff they do to us like it really doesn't seem like modern medicine sometimes : ) thanks for your reply T : )

Viilik70
Posts: 52
Joined: May 2012

When I first started taking Ambien to sleep I ha my feeding tube in and one night I went to bed and had a dream I went to the bathroom and cut my feeding tube off and in the morning I woke up to a very wet and nasty smelling bed because I'd actually cut the feeding tube off in the middle of the night! Walked to the bathroom and lopped it off and went back to bed! Yeah kind of scared the crap out of me when I woke up and really embarrassing to explain to the Dr who had to replace it : )'k

fishmanpa's picture
fishmanpa
Posts: 1069
Joined: Jan 2013

That stuff is dangerous! I had some issues with insomnia during treatment and my MO precribed it. Nasty stuff! I slept, don't get me wrong, but I awoke naked in places other than bed with zero recollection of how I got there! We were staying at Hope Lodge at the time. Good thing I didn't leave the room as the door locks behind you! And let's just say that meds you take to counteract the side effects of pain meds don't mix well with Ambien! 

"T"

donfoo's picture
donfoo
Posts: 994
Joined: Dec 2012

I use Restoril (Temazepam) on nights where I really struggle to get to sleep. Works fast and no hangover. Then again, if it gives me amnesia then who knows what I am doing at night. lol

TracyLynn72's picture
TracyLynn72
Posts: 603
Joined: May 2013

surgeries but they were back to back and within a week's time.  I didn't have the bone from my leg removed, they used a titanium plate to hold my face from caving in.  I had 1/2 of my lower jaw completely removed.  A close friend of mine had the graft from her leg and she said her leg was more sore than her face.  She has done great, though, and said she would do it all again. 

 

Wishing you nothing but the best!!

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