Ok...I finished radiation on 12/17, and on Jan. 19 I noticed I had a tender spot under left neck. As mouth began to "thaw" from radiation I found a sore behind left molar - seems jaw/gum shows cancer as well as lymph node involvement.

I go for more tests on Wed/2/16 PET full body scan and CT scan preparing for surgery...will get Fibular flap from leg to jaw possibly on 2/18.

Does anyone have any great ideas, stories, information to share to ease my mind...or things to watch out for? Any and all help would be appreciated.

Thanks,

Michele in IL

Michelle,

I've had the surgery and I'm still here to talk about it
Here is a video of Carol Coogan at the UWMC with my surgeon. http://www.youtube.com/watch?v=zNW6aY0Xims

It's an interesting interview and can show you what to expect. Carol is actually an OCF member and has posted on these forums before, she looks fantastic.

Ease you mind my dear. It is a big surgery but you can make it through it if I did

Eric

Michele, Ive had my lower jaw removed and a free flap made for my cheek and neck. My doc made me a special titanium jawbone but my body rejected it causing the free flap to not take. I was kept in a medically induced coma for 3 weeks due to all the problems I was having. I also had a trach. Make sure you ask for a possey muir valve trach if you are getting one. That way you will be able to talk easily. I had a much worse time than most do with this type of surgery. It is a long procedure, mine was 10 hours. I ended up being hospitalized for 2 months, most people only have to stay 1 or 2 weeks. If you want to read in more detail posts from that time frame, here is a link. Just remember, everybody is different. I had a rough time but most people get thru it much easier. I would say to prepare yourself to be incapacitated for at least a month. This way you will be ready for whatever you will come up against.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=102247#Post102247



PS ... Im having my final reconstructive surgery tomorrow. If you have questions I can help you with please send me a PM. I will answer as soon as I am able to.


Wishing you all the best with everything! We are here to help get you thru this. If I can do it, (just like Eric said) then you can too!!!!

Michele

I also had this surgery in April 2008. I had nearly all my lower jaw (mandible) removed and reconstructed. They took the bone and flap from my hip. It is a tough operation and recovery can take time, but it can be done. I was in surgery for about 14 hours and kept in hospital for 4 weeks.

Wishing you all the best for your surgery and recovery

Karen

Eric, I had seen that video the other day (and actually before when I just had my tongue done)...amazing! Weird to know someone that has that Dr. and that the patient has posted here! LOL Good luck tomorrow Christine. I will be looking for your posts while I am recovering. I am taking a computer with me. :o)Dr. has said 10-14 days since they are working on radiated skin. I hope I feel halfway decent after a week or so...so I can watch TV, play gameboy and take a vacation. LOL

Thanks, too, Karen...I know I have seen lots of tongue and back of tongue but not so many jaw so it is good to know I'm not the only one.

Right now the swelling is killing my neck - pulling on the old scar from the neck dissection. I did order a wedge pillow this time. Last time I made do with a pile of pillows but I figure with a face full of stitches I will need to be upright longer than last time.

Anything else I might need to have? I don't know if I will need a skin graft on the leg or not...I assume they take that from the other leg like they were going to for the arm flap. Nothing like BOTH legs hurting along with my neck and mouth. ARG!

Thanks for the talk-through...keep it up! I will continue to post here as I learn of dates, and procedures.

Thanks everyone!

Michele in IL

Michelle,

they take all of the tissue from around where they remove the fibula...at least they did with the mine and the others I've seen. I've had to have a follow up graft since then on the inside of my mouth, they used tissue from my hip/groin area on that one, no biggie.

The leg does smart afterwards though and I still walk with a bit of a limp but it's mostly due to how much tissue they had to use for my flap and grafts because of how large my primary was.

Dr. Futran is actually one of the top head/neck surgeons in the country, he's the head of the Univ. of Wa Medical Center's otolaryngology program which is rated #13th in the country by US New & World Report so I wasn't shocked to see the video.

Good luck my dear, I'm sure you'll do just fine though

Eric

The PET scan was clear except for the jaw and neck and the Ct scan showed legs were ok for bone donation. He did say something about me being made wrong or something but we never got back to it. LOL

I am set to go for Tuesday. So far I take pain meds, sleep, wake up, drink Ensure, take pain meds, sleep, wake up take pain meds, drink Ensure, sleep. I HOPE I can stay awake sometime in there before too long.

He said I would probably go home with trach and nasal feeding tube but if I am close to getting them out I am hoping he will keep me another day or two to remove them. I don't want to have to do those myself if I am doing ok. Seems silly to drive home, turn around 2 days later and come back to get them out anyway. Got everything described...hopefully won't need jaw wired but still can't eat/drink until stitches are healed for 2 weeks so I don't get apple juice in my neck. LOL

Ok, dozing at keyboard, must go back to bed.

Michele in IL

Michele, best of luck with your surgery on Tuesday! Please have someone post updates either here on on your facebook. Let us know that you have come out of the surgery alright. We all worry about each other and always watch for updates about others when they are having surgery. So please dont forget to get someone to give updates.

If you dont have one, pickup a dry erase board. You may find its easier to write than to talk for a while.

Im not familiar with how a nasal tube works. Davidcpa had one, maybe he can give you some pointers on how that is used.

May you get thru this phase of your life quickly and move on. Best of luck with everything!

I have a white board from the tongue surgery earlier...this time I taped STRING to the pens and eraser! ;o)

I will post on facebook...if I don't get here you or anyone else with facebook with me is welcome to post updates...PLEASE! I have the forum bookmarked but don't know if the family will remember to post here or not.

The nasal tube is just having food pumped through it in my nose...not bad but I don't want to go home with it!

I don't know what I did before the last surgery. I am DRINKING everything instead of eating...I was really upset at starving I am sure.

I will check in again before I go, if not before then.

Thanks everyone...

Michele in IL

Michele, do you have children that use facebook? Or a close friend who wouldnt mind writing something about your status on your facebook? I recently had surgery and unfortunately my hospital doesnt have internet access so I asked my daughter to write on my wall. She was happy to do it, I think it made her feel important helping me.

Ive had this surgery and I was kept in a medically induced coma for 3 weeks. This was just me, I havent heard of anyone else doing that. Anyway, I know you wont feel like posting anything at all. Thats why Im asking for you to give someone a job and have them write us that you are ok.

I wish you the very best with your upcoming surgery. It is not easy but you will get thru this and be ok. I will keep you in my prayers. (((HUGS)))