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Joined: Jan 2014
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I have been lurking these forums for some time, both pre-op and post op, and I have found a lot of good information, a really some strong people who are dealing with a lot more than I have. I'd first like to say that when I felt miserable about my condition both with pre-op jitters and post-op sadness, boy did I feel selfish about that when I read some of stories on here. You are all brave souls, no matter what phase of treatment you are in.

I have a few questions on recovery, and I am hoping to get a little light shined on the "medium" to "long" term recuperating. Here is a brief description of me and whatI went through:

I am 32, non-drink, non-smoker. I was discovered to have a tumor on the lower left mandible. It was at first biopsied as a low grade osteosarcoma, but given time it did not have the aggression of cancer. But after a few years , the mass had become a problem functionally in my jaw.

I had the tumor removed December 23, 2013, and as per the "norm" one surgeon performed the resection while the another performed the fibula free flap surgery, which took about 8 hours at a California hospital.

Post op I had some complications with nausea, and IVs but nothing major and I went home with in 8 days. They removed more teeth than I had thought they would--the back wisdom tooth all the way up, leaving just the very front left tooth. I had hopes that the 2 and 3rd tooth back could be saved but I guess not. On the plus side though, the analysis on the tumor came back as "Cemento ossifying fibroma" which is non-cancerous, and will not require radiation or chemo follow up.

Of course, I came out very swollen under the chin and and on the left cheek. Also, my leg was swollen very much in the ankle, and much of the lower leg. The swelling has subsided some, and as for walking, I spent about 2.5 weeks in the "boot", and have been walking without it after that. The ankle is still fairly stiff, and swollen. As for the face, my swelling has subsided, but the lower chin has become very hard, and is quite big still. Chewing has become better, eating very tender meats, in very small pieces, over very long periods of time.

Now finally for the questions! I am curious other people's experience's getting back to "normal" after surgery. I am curious to know when the facial swelling will be essentially gone. I also would like to know people's experience with dentures versus implants, and if anyone has gotten insurance to cover implants, as my surgeons currently do not think that will happen. If anyone has an idea on cost for implants that would be helpful too.

Secondly, while not an athlete, I really enjoy running, and often participated in mud runs and obstacle races. Some may find it odd, but the functionality of my leg was one of the biggest concerns I had with this surgery. I can walk relatively well now, with only minor aches and pains now 6 weeks out, and even went for a hike on a mild trail. But so far the ankle will not provide the flexibility to RUN! Are there any other runners out there that can share their experiences and time frame on getting back to the run? I am currently in physical therapy, (just started due to mix ups in authorizations and typical insurance/hospital run-around) and REALLY REALLY want to run more than anything.

I apologize for the "wall of text", and I really feel for all of you going through everything that you are. If there is anyone out there who I can answer questions for as far as what I have been through so far, please let me know and I would be glad to provide as much insight as I am able to.

Last edited by ChristineB; 02-03-2014 09:14 PM. Reason: removed specific doctors info
Joined: Oct 2013
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"Above & Beyond" Member (500+ posts)
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Hello Josh:
Welcome to the family and good to see you move from lurker to active status. Now, let's see if we can get some answers for you that you can use.

I used to be a runner too, so I can understand your desire to get back into it. My knees have pretty much told me I can continue to walk or if I persist in running that walking may become questionnable.

Long story short, I don't have any answers for you right now, but I know we have runners in the family and hopefully one of them shares your situation and can help.

Since your surgery is pretty recent it may be a little soon to be worrying too much about your long term future. You're in therapy and from your post succeeding at it, so there's no reason not to be hopeful that in time the running can resume.

Normally, people start off in the Introduce Yourself forum, but as you are far far past those newbie issues, I'd say you are in the right forum for your particular situation. It may take a little while for you to get some answers, so hang in there and be patient, they will come.

Welcome to the family
Tony



Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Patient Advocate (old timer, 2000 posts)

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Welcome to OCF! You have been thru alot too. Always remember....all good things come in time. Recovery from the major surgery you just went thru will take a considerable amount of time (a good year, maybe even a little longer).

The swelling should be mostly subsided in about 6-8 weeks. For it to be completely gone it can take an entire year. Same goes with the leg. You have to look at the entire picture, you have been thru a MAJOR surgery which will take months to recover from. You really will get to those mud runs and events soon enough, probably not until next year though.

You cant force yourself to heal faster but you can add some high protein whey powder to your diet to help hurry it along. Of course, ask your doc first. Protein is what a body needs to heal itself so right now adding extra protein should help you to bounce back quicker.

Im glad to hear you have already begun rehab. This is something you will need to get you back into running condition. Rehab can help you with eating, your leg, stiffness and even scar tissue. Sounds like your chin has some of that going on which can limit your movements.

Bad news with the dental insurance covering implants and/or dentures! Thats something many of us have fought for. Coding and having your doc write letters to appeal the denials will hopefully help to get approvals, but it doesnt always work. Darn insurance companies are there to make a profit and they will always try to deny services which should rightfully get coverage.

Ive been lucky with my doctors going to bat for me and pushing appeals until the insurance company gave their ok. My docs have very kindly even written off some of their charges. They know me very well and stood by my side as I went thru being diagnosed with OC 3 times in 3 years. The 3rd time left me permanently disfigured. I can only hope you are as lucky as I am with your doctors going the extra mile for you as mine did for me.

Hang in there with your physical therapy. It can be a long frustrating journey to get back to your old life. Dont be surprised to see a couple set backs pop up here and there. Your age should help you to recover quicker. Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Dec 2010
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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HI - I wanted to welcome you. Christine has been there along with a few others there, so I will let them offer their advice. However, I did want to say hi...


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Jan 2013
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Patient Advocate (1000+ posts)
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Welcome Josh,

Thank goodness you do not have cancer! It is rare we get someone like you who has a significant tumor that needs resection. Your recovery will be similar as oral cancer survivors but different in some ways too. For example, implants are nearly always ruled out for those who had radiation treatment. You may be a candidate depending on the integrity of the jawbone. Nearly universal is the lack of typical insurance coverage for implants.

Good luck,
Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com

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