Hi there,

I am new here but the forum has been a great source of help to me over the past couple of months. I had the left half of my mandible removed for a benign but very aggressive tumor 4 weeks ago and reconstruction using fibula bone and muscle and skin flaps for the inside of my mouth.

I was just wondering how mobile people have been after this type of surgery. I am a young guy (27yo) and keen to get back to skiing, scuba diving, sailing etc. Has anybody gone back to doing such sports following surgery?

Ive undergone the same operation and it took me a very long time to recover. Overall Im pretty good now. My surgery was Aug 24, 2009 and in some ways Im still working on getting better. It takes one full year for the blood vessels to join together and regrow new ones. Also, the swelling takes a year to completely go away. At your age it will probably be at least 6 months post surgery before you could do any strenuous sports. When I was at the 6 month point, I was still very weak. I was walking a couple miles and back to riding my bike on short trips about 9 months post surgery.

I cant imagine putting a wetsuit or goggles anywhere near the reconstructed area. Ice cold air might not be the best idea either. This is very sensitive new tissue. My original surgery failed and it had to be redone so thats why Im suggesting all the caution. You do not want to go thru this again! Maybe you could get back to your active lifestyle by starting with less strenuous sports. Count your blessings and be happy that your tumor was benign. You are a very very fortunate young man!!!

Its best to always check this out with your doctor.

Thanks Christine, yes I think you are right that building up by doing less strenuous sports first is the way to move forward, and just see how I go.

I certainly do feel lucky, as you say. Friends and family have of course been very sympathetic to me during treatment, but I have been telling them all that really I just feel incredibly fortunate that the tumor was benign, having met so many head and neck cancer patients in the wards, clinics (and online forums) that I have been in over the past few weeks, and the far greater trials that many have to face up to.

Have you met with a pt?? If not request one through your hospital. If your doctor can't help, ask to speak with someone in social services. Your insurance should cover this. I had a pt come to the house after this surgery and he gave me exercises to do. I can not advise you about strenuous activities as I have never liked any. My theory is that one only needs to be in as good a condition as necessary for daily life and if necessary to do more the adrenalin will kick in and you'll just have have sore muscles. There have been posters here who have gone on to biking, skiing, etc. I was told not to put weight bearing activity on my leg for about a year. However as you are young and in good condition your case may be different. Scuba diving seems safer than skiing although there may be a problem with pressure. Ask your surgeon. He has experience and knows the risks.

Realize that surgery is just like any injury. Muscles and other tissues need time to heal properly. You want to help the healing process and not cause damage which could be prevented.

Good luck

I was close to your age when I had my surgery (33) and was an athlete, wrestling, running, biking, hiking etc...some intepretive dancing when I felt "saucy".

I couldn't imagine doing anything too physical 6 months after the surgery but everyone is different. Apparantly there was a guy who had his surgery at the UWMC shortly before me that was a competitive runner that was running 6 weeks afterwards. It all depends on you, what was done etc...

Personally I had too much tissue taken from the area to reconstruct my face to do too much and I still have issues 2.5 years afterwards. I walk with a bit of a limp, use a cane when on uneven ground...but I also am on my feet 12-16 hours a day 6-7 days a week. I get around pretty good and I have done some "running" since but it's not what I did before.

The positives is that you don't have any side effects from radiaiton (dry mouth, lowered testosterone etc...) so you should be in good shape.

Good luck but follow the old addage "if it hurts don't do it" as it's your body telling you it's not ready. (there is a difference between "sore" and "hurts")

So I've been researching this subject a lot lately as I've seriously thought about doing a marathon. I'm a little over 3 years post op right now and up until the last year I wasn't really active on my leg.

I actually found this post again Googling "running after fibula flap" and thought I may as well share my experience here and findings. Thus far I haven't found a lot of information out there on the follow up activities of patients that have undergone this operation only that there have been 0 permanent disability due to the leg and 1 report of a patient who's ran a marathon.

Over the last 5 months I've been training very hard to get back into shape and build muscle however my training has focused more on weight lifting, sprints, bleachers and short distances of no more then 2 miles. This activity has been difficult at times due to the long term issues I have with my leg however has also helped stabilize the leg and lessen the chronic pain I experience because of it.

After the extraction of the fibula and a large area of tissue my foot does not have full range of motion and my leg is weak particularly at the ankle, which I've read is common. Weight lifting and the sprints have helped the weakness to a point (still lags) however the range of motion is not getting any better no matter how much stretching, massage or yoga I've done.

For about the last week I've been focusing on longer distance as a goal of mine is to run a marathon and wrestling season is starting in a few weeks and I plan to help out and roll with the local high school team. I started upping my running from the short 1-2 mile runs to 4 miles of mostly even ground. What I'm finding is that I don't believe my foot will be able to handle it due to the poor range of motion.

I've been icing my leg to lessen the pain and swelling and will need to have my Dr check me out, I'm also going to try bracing at the calf and ankle. What I'm finding is that the other leg is wearing due to overcompensating for the weak and lack of motion at the foot.

I'm researching different form and techniques to possibly help, if there are any others that have experience with this, I'd love feedback as I fully intend to do this thing!

Eric

Hi everyone, very interesting posts and thanks for all your replies. Thanks for sharing your experiences Eric.

I am now 15 months post op and I thought I would also come on here to discuss my experiences a bit.

The wound on my leg took ages to heal up, over 2 months. During that time I was going back to the hospital 2/3 times a week to have the wound dressed by the nurse, every time the dressing was taken off I was hoping it would look better, but it just was not healing and always looked a real mess. Then all of a sudden it healed up. I had already been doing quite a lot of physio on the recommendation of the surgeon and the PT, building up strength in the leg, and 10 weeks post op I was in the ocean scuba diving with no problems at all.

I have been building the strength in the leg to the point where it is now as strong as it was before. However, I do have a problem to report. The flexor hallucis longus muscle which controls the big toe has seemingly been scarred in the operation and shortened. The result is that I have developed "claw" or "hammer toe" in my big toe - basically the muscles/tendons are too short and the toe is pulled downwards, especailly when my knee is bent. This makes running tough as I dont have the usual push from my toe, and walking uphill is very uncomfortable. I am going to have an operation soon to lengthen the tendon which will put me on crutches for a month or so.

I realise this is a small complication given the issues so many other people have confronted with their treatments, but I was wondering if any other fibula flap patients have experienced this or similar? It would be very interesting to hear.

It's the old adage - use it or lose it! When I nursed years ago one of the things that we did for all bed bound patients who were still mobile was passive range of motion. This was an important part of care because as you well know - if you lay all day in a bed for long periods - or even sit all day in a chair (as most of us do post rads and chemo because we feel super crappy) - you use the your muscles very little. (leg in particular - but arms, back etc... As well). Now I am not sure how long after surgery and treatment every one here started trying trying to be active, but the sooner the better. I started physio 3 weeks out of rads... And lymphatic massage and acupuncture (to drain the build up of lymph fluid and promote circulation to my jaw and neck) - approximately 6 weeks after treatment. It wasn't fun, but in my opinion the longer you wait - the more time any post operative - post treatment issues (muscle atrophy - tendon shortening - etc..) has to set in - and unfortunately become permanent -. Some stuff - because of surgery - you can't control. The hammer toe is one thing that sounds like it was going to happen regardless - but the body has an amazing way of compensating for damage done to it - the sooner you start training it the better - to maintain and regain mobility. I know that some days you just want to be a giant eggplant and veg... But that should be a reward.. Walk the dog, massage and flex your legs, do one excercise - then be a veg. Medicine is very focused on fix, and cure, with very little thought to - after?! Unfortunately not being medical professionals - most people don't know that there are things you can do to minimized the post treatment issues. I have been blessed. I have pretty much full range of motion in my neck and left arm now, I still have numbness in my neck and ear that likely will never go away. I walk around doing pufferfish exercises and stretching my neck, mouth, tongue and cheeks frequently throughout the day. I look like a fool, but I've been doing this throughout treatment from the beginning and believe me here were days it HURT however I have maximum tongue mobility - partly due to an awesome surgical team, but also because I worked at it. I can now curl my tongue so that the tip can touch the back 2/3 of my palate - and I'm missing 2/3 -1/2 of it - my other side has learned to compensate and carry the dead weight of the new side. Now my surgery was minor compared to the fibula/mandible reconstruction - i know- but the same thing holds true - though on a larger scale - use it or lose it - even if its just to hobble around a bit, or do passive flexion etc.. So to reinforce tetra you totally did the right thing, working at it as soon as able. Good luck on the tendon surgery!

I could not agree more Cheryl, you are totally right.

Unfortunately for me the claw toe is something that was unavoidable and scar tissue is scar tissue no matter how much exercise you are doing post op.

However I would say to everyone who is confronting this surgery - if anyone is reading this - that my key piece of advice is to get active as soon as you possibly can. As soon as they say you can put weight on the leg, get out of that bed no matter how tired you feel, and walk, with a frame, with two people holding your arms, whatever works. You will have spent a load of time sedated and in bed (I was asleep for 3 days post op) and you will feel seriously weak and probbaly still quite disorientated, but do what you can even if it is just walking a few feet, your leg can take it.

If you want to get walking you will be using a zimmer frame or crutches or sticks or holding onto a ballustrade, so a strong upper body is important - try to go into the operation as strong as possible in your upper body. I know this is obviously easier said than done given how much other stuff you will have going on, and none of us is going to be heading down to Gold's Gym in the days before the op (!) but if you go in to the op feeling as strong as possible, the recovery will be easier.