Anita,

sorry I haven't checked this thread sooner. I was going to say that the sight just sounds like it's drainage which occured after my surgery for a little while.

My donor leg still hurts from time to time and I don't have the strength in it I used to...but then again they had to take a lot of tissue to rebuild the inside of my mouth so he may be spared that.

The swelling takes months to come down...my jaw was wired shut for months to keep my teeth aligned so there was no chance for food for me, which is why I lossed over 40lbs afterwards (70lbs total from tx/op). I've seen so many people with the fibula replacement and they look absolutely the same afterwards...or very close. If you do a google search under Dr. Neil Futran (my surgeon) he's got a few U of Washington MC videos online where he interviews a gal after her total recovery, and she looks great.

Mine...well let's say I had other complications and got hit with the ugly stick, however my last surgery to repair my facial nerve should correct much of it.

Good luck, keep spirits up!

Eric

Hi, Eric,

I just watched the video of your Dr with his patient. I really enjoy seeing the HOW on this type of surgery. So interesting. And she does look great. I noticed that she did not have rads.

We had a marathon day with 3 appointments. The drainage from the wound has slowed down some. The PS is optimistic that this will resolve when the flap meshes completely to the radiated skin and surrounding tissues.

Clark developed a sensitivity to topical bacitracin as his skin is red, itchy and a little puffy. Discontinuing that.

The Oral/Max said at least 4 to 6 weeks before Clark can chew. He lost his sense of smell and taste which the OM thinks may be that the tube they put in his nose and throat irritated a nerve. He called it a common complaint after surgery. Clark is very worried that taste and smell won't return.

When I change the dressing on Clark's donor site, I notice that some of the new skin comes off even though I am using the non adhering petrolatum soaked gauze. The PS said that it is not unusual. If the gauze is sticking to the wound, he takes his shower with the gauze on, and afterwards the gauze peels off really easy. Then I redress the wound.

I did see your pic on Facebook. Your look so young! Thanks for writing. Take care and keep looking up!

Anita

Anita,

Remember they caught her cancer early...your husband and I are T4's, early stage usually means less invasive surgeries and easier treatment options. Nerve damage is tricky, make sure you ask pressing questions there...you'll learn that sometimes unless pressed your dr's won't offer up important information.

I'm allergic to a host of antibiotics, so that's not an uncommon thing to me. As for the looking young...well as I say I have a baby face...a curse when younger a blessing as I've aged. If this facial nerve surgery works for me I'll soon look as young and handsome as I did prior to treatment...or one can hope.

Keep the Faith as my friend Charm would say, Good luck

Eric

Eric,

It is my understanding that when cancer is detected in the bone, it is automatically Stage IV, with the standard of care surgery then Rads. Wasn't Coogan's cancer also in the bone? Why wouldn't she have had radiation?

Just wondering.

Anita

Anita,

Radiation isn't a must, it is the big gun in the room that can only be fired once...35x or so but you get my meaning. Her tumor was small, originated in the jawbone itself and she didn't have any metastisis.

She had two different types of chemo treatments, before and after surgery, her surgery was done by one of the best surgeons in the country...why have rads? The only reason to is to lessen the chance of a recurrance, but then if you get a recurrance you don't have radiation to help you if it's agressive.

My primary was huge and I had a secondary stage 4 tumor in a local lymph with 2 other hot nodes...after chemo and rads I had responded well to it and was techically cancer free (below malignant levels) and was given the option of surgery...it wasn't mandatory. In fact Dr. Futran called me himself and said, "So it seems you may not need my services after all?"

Of course my ENT intelligently referred my case to the UWMC straight away, my tumor board was held there and Dr. Futran's team set out my treatment plan for my local team to follow. So I'd been using his services all along. But I chose the surgery to repair my jaw, as it was severely damaged and to remove all of the damaged tissue plus lessen the chance of a recurrance...no one could've predicted the facial paralysis that occured due to that surgery.

Sorry...ramble, hope it made sense.

Eric

Well, here we go again. The drainage from the wound has returned in a new location. There is a small hole in the suture line right over the area that had/has the crunchy sensation (crepitus). It weeps continuously. Pinkish white color, no odor, no fever, no chills. Fortunately, we see the PS on Wed. for a follow up. Clark is so frustrated with this new thing. He is worried that the plate is causing the infection. Still has lots of pain in his jaw. The percoset helps. He is just getting tired of it all.

Just needed to write this down.

Hi Anita. I think of you often. I'm so sorry that things are not going better and Clark is still having difficulties with his healing. Hang in there and I will keep you in my prayers.

Thanks, Wanda. I can always count on you for understanding.

Vent Anita, that's what these forums are for. I highly doubt that the plate is causing the infection. I did have an area that just would not heal, had granulated tissue and continously wept for almost a year after surgery. I had a minor surgery from my ENT to remove a piece of the plate, 3 screws and he cut out the tissue that wasn't healing....haven't had an issue since.

I did have to have a skin graft to replace the tissue on my last surgery due to where the original tissue was taken. It was further disfiguring my mouth, further pulling it down due to the lack of tissue in the area. It looks better now and if the nerve graft takes then I won't have much evidence of it even being an issue.

I'm still worried about Clark's mental state, this isn't an easy path he's been set down...but it's his path, he's got to walk it. Occupy that mind with anything as long as it's positive...really though talk to your physician about anti-depressants. I don't think they are the answer everytime however I do think that you should have every tool available to Clark to keep him "in" this fight.

Good Luck

Eric

Thank you, Eric. It is so good to hear similar stories about recovery. While I am not celebrating your bumps in the road, they give us a common bond. It is less alienating.

Clark has also had some nerve damage in his left shoulder. The blood vessels for the new flap were grafted along the clavicle. The result is that his shoulder has lost some muscle tone, is numb along the top and his arm/shoulder movement is restricted. We saw his regular Dr yesterday and they took an xray. Results tomorrow. Dr wrote a script for physical therapy. The nerves may regenerate OR this could be permanent. We'll see.

This morning, Tyler Florence was on Today and was preparing a crown roast of pork, one of Clark's FAVORITES. He said to me, " Someday, I'm going to eat that again. I am not going to let this cancer defeat me." That's right, baby, put of your dukes and fight. You show 'em who's boss! We had a good laugh and he was smiling one of the biggest grins I have seen in a long time.

He wears Polo cologne and today he could smell it a little more. Up to now he didn't smell it at all since this last surgery. I will keep vigilant regarding his mental status. He vascillates from frustrated to resigned.

We have a visit with the PS tomorrow. He going to have to answer a LOT of questions.

Eric, I appreciate your support and interest!

Anita