Update on jaw resection

Mikemetz

My jaw resection was 4+ weeks ago, and so far it's been a mixed bag to report.  The good news is that the main surgical site appears to be healing well, as is the 'donor' site on my left leg where they took the skin and bone for my new left jaw.

On the other side, I had some complications that have caused me to need a lot more post-surgery attention than was anticipated.  I had an infection in my gum line that got exposed during the surgery and I've been on IV antibiotics all this time--with more weeks to come. The daily schedule for that is very time consuming--about 5 hours a day.  I take the meds through a PICC line--another unanticipated result from the surgery.

Because of the infection the docs wanted to keep my mouth clean, so I've been using a nasal feeding tube since the operation, and can only take in Iso-source liquid 'food' so far.  I hope to have the tube removed today, and start the long progression back to eating food orally.

It appears that the peroneal nerve on my left leg got nicked or bruised  at the donor site, and I have no dorsi-flexion (can't lift my foot up from the ankle) on that side.  It could also be caused by the swelling.  It was not encouraging when I told that to the plastic surgeon who did the donor site, and he said "Hmm, that's never happened before"--which tells me he made a mistake!  So, I have "drop foot" on that side and need a support brace to walk correctly.  No prognosis yet if it will be temporary or permanent.

I had hoped to walk a 10K race on July 4th, but that will depend on how fast the foot nerve comes around and the swelling goes down.  I can't walk that distance with the brace on.

All in all, I am getting stronger every day and able to work from home on a limited basis.  My wife has been a wonderful nurse to me, and I owe her for any gains I've had so far--and for keeping me from needing to go the the ER or hospital again--after some minor emergencies.  Caregivers--don't underestimate for a minute  how critical you are to us!

More soon.

mike

 

 

 

hwt

Mike

Thanks for posting, I was thinking of you and wondering how you were progressing. I had totally forgotten about the possibility of drop foot until you mentioned it. Following my surgery, I recall a girl coming in to ICU and heating material up in an electric skillet to make me a boot. I velcroed it on and they insisted it be worn at night to sleep in order to prevent drop foot so apparently, that isn't an unheard of side effect. Sorry that you encountered it and hope it resolves for you soon. 

Sorry about the infection at your gum line. Sounds like they are on top of that. I also hated that feeding tube in my nose and was ever so happy when they pulled it and gave me a g-tube. 

How is your pain? Did the jaw line match up well? When you get back to eating, I hope you won't have too much difficulty.  Is the lower corner of your lip numb? When I first got home mine did not shut completely where it was numb but that resolved with time (corner still numb and always will be). I still drink primarily with a straw but if I concentrate and go slow can do without. All takes time. Curious as to whether your lower jaw is very heavy...I used to say that mine felt like I had a bag of quarters hanging on it, then it went to a bag of nickels and then just discomfort.  

Best wishes for continued progress.

Candi

jim and i

Mike, Sorry for the nasty

Mike, Sorry for the nasty side effects. I am praying the foot heals and you are able to walk the 10L.

Debbie

D Lewis

Thanks for the update

Sending healing thoughts your way. 

Deb

traceyd1

Drop foot

My husband had this surgery two and a half years ago.  He actually had both fibulas removed because the first surgery failed due to radiation damage and poor blood flow.  He had drop foot on one of the legs and had to wear a boot for a couple of weeks.  The doctors didn't seem to think that it was an unheard of complication, just not extremely common.  They had, in fact discussed this complication possibility prior to surgery.  He also had a little trouble with this toe dropping as well.  He still doesn't have total range of motion, but it is not impeding his mobility at all.  In fact, he walked a 5K a couple of months ago for Oral Cancer Awareness here in Baton Rouge.  Good Luck to you!

donfoo

hoping for the best

Hi Mike,

I too was wondering how things were coming along. Seems like pretty serious surgery and recovery is experiencing a few bumps to say the least. You got the will, just need the time to heal and back to running. Wishes for the speediest recovery! Don

Hondo

Hi Mike

Wow you sound great for just 4 weeks out of surgery, please let me know how the new Jaw works for you eating and chewing. Also how far you will be able to open your mouth, I am stuck with only ½ of opening and can’t find a doctor who is willing to touch me. I don’t know if it is because of all the radiation I took or they just don’t want to mess with it. It is hell trying to keep my teeth clean or go to a dentist for anything.

Tim Hondo

Mikemetz

Hondo said:

Hi Mike

Wow you sound great for just 4 weeks out of surgery, please let me know how the new Jaw works for you eating and chewing. Also how far you will be able to open your mouth, I am stuck with only ½ of opening and can’t find a doctor who is willing to touch me. I don’t know if it is because of all the radiation I took or they just don’t want to mess with it. It is hell trying to keep my teeth clean or go to a dentist for anything.

Tim Hondo

Another update

Thanks to every one who responded with well wishes and your own experiences with this procedure.  To answer some of your questions, my jaw seems to be aligned well so far.  It really feels like it did pre-surgery.  The drop foot remains an issue and will likely keep me from walking a 10K on July 4th.  I'm disappointed because that race is high on my Cancer Revenge List and I've run it every year since 2010 (treatments in 2009).  Next year, for sure.

They did remove the nasal feeding tube on Tuesday--what a relief!  I hated that *&^(ing thing with a passion.  I can tolerate pain and discomfort more than the average person in every other part of my body, but when it comes to shoving stuff up my nose or down my throat, I go ballistic.

I found a brace for my left foot that seems to work OK.  No prognosis yet on if it might be permanent, or how long it will take for the nerve to regenerate.

I am now doing the careful progression with eating orally and keeping my mouth clean.  So far, pureed soups, Boost, pudding, ice cream, scramble eggs, etc.  I did sneak a steamed dumpling from my wife's plate of Chinese food last night and was able to eat that after cutting it into very small pieces. 

The challenge now is to make sure I meet my daily caloric needs.  My stomach shrunk from 5 weeks of tube feeding, so I can't eat a lot in one sitting.  So, several small meals and snacks, and counting the calories every day.  My motivation is simple--eat safely, keep my mouth clean, and meet my caloric needs, so the freaking tube doesn't go back in.

Mike (to Dr. Roser, the oral surgeon):  What happens if I get another infection or lose too much weight?

Roser: The tube goes back in.

Mike: You'll have to catch me first.

Roser (not missing a beat): You'll be easy to catch, and with your left foot in that brace, you'll run in a circle.  I'll just wait until you circle back to me.

Damn him!

If you want to read the long story of events since May 1, you can google 'mike metzler beats cancer'.  That will bring up the link to my blog.

Again, thanks for the support.

mike

 

debbiejeanne

Mikemetz said:

Another update

Thanks to every one who responded with well wishes and your own experiences with this procedure.  To answer some of your questions, my jaw seems to be aligned well so far.  It really feels like it did pre-surgery.  The drop foot remains an issue and will likely keep me from walking a 10K on July 4th.  I'm disappointed because that race is high on my Cancer Revenge List and I've run it every year since 2010 (treatments in 2009).  Next year, for sure.

They did remove the nasal feeding tube on Tuesday--what a relief!  I hated that *&^(ing thing with a passion.  I can tolerate pain and discomfort more than the average person in every other part of my body, but when it comes to shoving stuff up my nose or down my throat, I go ballistic.

I found a brace for my left foot that seems to work OK.  No prognosis yet on if it might be permanent, or how long it will take for the nerve to regenerate.

I am now doing the careful progression with eating orally and keeping my mouth clean.  So far, pureed soups, Boost, pudding, ice cream, scramble eggs, etc.  I did sneak a steamed dumpling from my wife's plate of Chinese food last night and was able to eat that after cutting it into very small pieces. 

The challenge now is to make sure I meet my daily caloric needs.  My stomach shrunk from 5 weeks of tube feeding, so I can't eat a lot in one sitting.  So, several small meals and snacks, and counting the calories every day.  My motivation is simple--eat safely, keep my mouth clean, and meet my caloric needs, so the freaking tube doesn't go back in.

Mike (to Dr. Roser, the oral surgeon):  What happens if I get another infection or lose too much weight?

Roser: The tube goes back in.

Mike: You'll have to catch me first.

Roser (not missing a beat): You'll be easy to catch, and with your left foot in that brace, you'll run in a circle.  I'll just wait until you circle back to me.

Damn him!

If you want to read the long story of events since May 1, you can google 'mike metzler beats cancer'.  That will bring up the link to my blog.

Again, thanks for the support.

mike

 

Mike, i'm glad the tube is

Mike, i'm glad the tube is gone, that is always a big deal.  i'm praying the foot is temporary and gets better quick.  next year you'll be in great shape to do that walk.  the doc had a good point but i hope he won't need to catch you.....lol.  hang in there Mike.

dj