I have decided to go ahead with reconstruction of my mandible with a fibula free flap if circulation in my legs is good. The surgery will be in December. I have an appointment next week with the prosthodontist who will be on the team. The plastic surgeon trained at SloanK and is the only one doing this surgery here. Of course my ENT oncologist will also participate. I have been told that I will be in ICU for a few days, in the hospital for 2 weeks, and have several months of followup therapy.
Thanks to all who responded to the thread started by August requwesting information on this procedure.
I had swallowing problems before OC and have to have my esophagus dilated every few years. With half a mandible I only have 2 teeth to chew with and 2 to bite/nibble food. I have to be very careful to eat tiny bites and chew well or I choke. My bite is shifting and the numbness of part of the tongue from surgery sometimes gives me problems. I am afraid that if I wait too long, I may have serious choking.
Malka,
I have read quite a bit of material about this procedure and if I were in your position and able to have it done I would. The benefits certainly outweigh the risks, in my opinion.
I know that from beginning to end it will not be an easy path but, easy disapperead when they said it was cancer. You have obviously done your research and due diligence about this procedure from what I have read and have a good team of doctors. What is the prosthodontist saying about final prosthesis or teeth?
I am sure you are much more knowledgeable about the subject than am I and I know you will keep us all up to date when you can.
I wish you all the best and you are in my thoughts and prayers.
If I can be of any assistance let me know, I'm here whenever you need me.
Cheers,
Mike
Malka:
You have always inspired me with your bravery. Wishing you the best possible outcome with your continued tx on the road to recovery. Sometimes it sure is difficult to continue all these procedures trying to get well. You have been and will continue to be a part of my prayers.
Malka, I wrote you a long note here......dunno what happened to it....You'll have angiogram first, to determine whether or not your circulation is good enough to support the tissue after it is transferred, and, I suppose, to be sure that the donor site will heal also....Then they will do, I think, a CT from which a fancy acrylic 3-D mold will be made to show every single bone in your head. The fibular graft seems to be the "gold standard" and for the mandible, the best choice of procedures. I know that you are in good hands down there is N.O. I'll keep track of you here, and I would always enjoy hearing from you by email. When do you plan to begin this process? I think that you'll be soso glad you did it, after that initial yukky period of recovery. You go, girl! Good for you! ....It's a brave, but realistic decision.
XOX
Colleen,
The medical marathon begins this week.Monday I will call the dermatologist because I have a spot on my hand that looks suspicious. That will probably take three or four visits.
I see the prosthodontist Thursday. The CT of my head (I hope they don't look at my scrambled brain), check of lower extremities for circulation and a panorex are being done Friday. I will also have annual CT of the kidneys then. Next week I go for the surgeon for check on healing from the breast cancer. (David - how's Martha?)
I have been able to schedule some double appointments - one day I see the ENT and urologist at TU and on anothe day I go to the dentist and internist who are in the same building. At least I'll save a little on gas!
I see the surgeon the 21st of Nov. and hopefully the surgery will be the first or second week of Dec.
Now I have to find time to do a little shopping. I need a new raincoat w liner - mine is shot and very old. I also need a new warm coat as the one I have is very bulky and is heavy around the neck. Such problems LOL.
Malka,
Good luck with the surgery. You are a trooper and an inspiration to us all. I have no doubt that you will have a great outcome.
You will be in my prayers.
Jerry
Malka,
Good luck to a great person. Martha & I will be waiting to hear your next post.
Malka- You will come thorugh this with flying colors...and a new coat. Best of luck!
Sue
Malka,
Let me know what brand and where you find that raincoat with a liner. I've been looking for one for years including last week and can't find a decent one.
Sounds like you'll be running a marathon of doctor appointments. Hope everything works out for you and you can have the surgery. Keep us posted.
Take care,
Eileen
I heard about these beltless raincoats that are suppose to be the rave of the future...and be very careful about walking in any wine store wearing that big puffy winter jacket.
We don't wear down here. My coat is a "wash and wear mink." It is fake fur on one side and fake suede on the other. The collar makes a hood. It weighs a few pounds.
Malka,
My favorite coat is a jacket from Cabela's. I tis Goretex, feels like a windbreaker, has a detachable polartec liner, a hood. I love it. It is so easy to wear and light to carry around. Go to
www.cabelas.com they are not very pretty, but I would think easier, lighter and warmer would be ok. I have had mine for 4 years now.
Donna
RE: raincoat
I still haven't found the all weather coat here in my size range - petites although the stores do have them in regular sizes. London Fog makes several styles and one of the stores has petites in their on line catalogue but not in stores. I will either have them order it for me or just get it myself online from them. I am a big advocate of shopping locally especially since Katrina.
Good news today.
I had a "double date" - saw the ENT at ll AM and the Urologist at 1 PM. CT showed no difference in the kidneys since last year. That means come January it will be 5 years for the kidneys.
The ENT told me to come back after the other appointment. In the meantime he spoke w the surgeon who then met with us and told us what to expect and took a few mug shots. I asked about the actual proceedure because I find the details fascinating. He showed us a photo of a free flap (real) and I thought my husband was going to fall off the chair. I think he looked at the camera and not the picture when he saw that it was a red mass!
I now have a date for the surgery - December 11. I will not be able to put weight on my leg for a while. Big problem - we have a two story townhouse with no bedroom downstairs and only a half bath. I told the ENT I could always go outside and be hosed down instead of taking a shower or bath. He said I may have to go to a rehab center for a while after discharge. Oh well, that's a Scarlet problem - I'll worry about it tomorrow.
I want to thank all who have been so informative and supportive about the free flap surgery. A special tearful thanks for Minnie. Her response helped me make this decission.
Malka
Hi Malka
In April this year I had nearly all of my mandible replaced and rebuilt with bone from my hip and a tongue flap reconstruction and was in hospital for nearly 3 weeks.
My home is one level, but I was also told where possible to keep away from stairs early after the surgery - not long after though I had no problems with stairs at all.
In my situation they also managed to save the nerves to my mouth that can be extremely difficult to keep in intact and not damage (not sure what all the technical terms are) so I was fortunate enough not to lose any feeling and movement at the side of my mouth and in my lips.
I sincerely hope that everything goes well and you have a super speedy recovery.
Thinking of you
Karen
Milka,
I had the very same surgery you are facing. Mine was done at the Mayo Hospital. The surgery was very long (14 hours). Part of my fibula was used to rebuild the mandible. I was in the hospital for two and a half weeks. I had a trach and didn't talk for about a week, but there is nothing wrong with your brain and you can certainly write notes and tell people of your concerns. The very next day I was walking with the help of a physical theropist. I was told to put pressure on my leg where a portion of the bone was removed, but to pretend that I was walking on a cracker and to be careful not to break the cracker. After three days I could walk normally. Get out of bed and wolk as soon as possible. Even around the hospital corridor by your room. Moving helps you gain stregth, but aids in your recovery. A very positive attitude is imperative. Tell yourself I can do this and everyday I will get better. It works. I was driving with in a month of the surgery. I wish you a successful surgery and a very speedy recovery.
Hacklene
Malka- My husband had that surgery and the leg pain was not too bad. He did have a wheelchair for a short time to get into doctors offices from parking lots. It would also be helpful to have a cane for awhile. He really didn't have very much trouble getting around and we used a shower chair. The overall result to the face was great. Best of luck.
Sue
Don't sweat the shower stuf -- It's a habit, not a real need, to shower daily -- The nurses in hospital don't push it, so why should you? A daily damp towel bath will more than suffice until the stairs can be conquered.
Personally, I did my best to avoid a rehab or skilled nursing facility (aka SNF, known to the med profession as a "sniff")because I KNOW from previous experience that I heal much better at home than anywhere else.
If you still have the trach when you are discharged, you will most likely need a suction machine.
BTW, here's a blow-by-blow of my own free-flap surgery, but I didn't have any bone work done:
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=75331&page=all
Hey Malka,
Proud of you for being so brave. I will be thinking of
you. I know everything will work out for you because
of your positive attitude.
Keep in touch
Debbie
Malka,
Good luck with the surgery. I have no doubt that you will continue to be the wonder woman that we all know.
How did the meeting go this week?
Jerry
Yeah Malka, GOOD LUCK and come back cured.
Some things that will help.
I made up cards ahead of time that said
"Thank YOU'"
"I need a nurse"
"I need help going to the restroom"
You get the picture. You cannot talk with a trach-so
take a notebook you can write in to people. I got tired
of writing, so notes came in handy too..
Take care
Debbie
Thank you all for the information and good wishes. You are helping me to feel more confident about this. There is much technical information available from the simplest to the most medicaly descriptive but these forums are wonderful for the practical advice from soldiers who have been in the trenches.
This is another "missing Minnie" moment. She was so positive and funny in her posts about the after effects. This reply from her on another thread is one of the factors which helped me decide to go ahead with the free flap reconstruction:
My leg issues come from the donor leg being slightly weaker than my other leg. Make sense since they have taken some of it's support bone away. I CAN run if I want to, but would rather not as it puts alot of pressure on that leg. I also find that I can't raise it up as high as the "good" leg if I don't concentrate. I have a new dog and put up some gates to keep her confined to the family room until I have her housebroken. The first time I stepped over the gate I took quite a tumble. I led with my good leg and my donor leg didn't raise up high enough to clear the gate........and over I went. Now I lead with my donor leg and dont have any issues.
Pete - I realized that I will have a cast on my leg for a while and I will not be able to put weight on the leg right away so I won't be able to get in a tub for a bath or shower for a while so it will have to be those awful sponge baths or stink. I an abide those better than I can the waterless shampoo.
Debbie - Thanks for the good idea. You forgot OUCH!! I bougth an erasable board to attach to my clipboard but don't think I will need it if I do as you suggest. Last time I just wrote on index cards and a tablet but I like your idea of having ready mades and then I could use the index cards or note paper if needed for other communication. (My clipboard is the kind that opens up to hold stuff.)
I did very well with the trach and was speaking much sooner and clearer than expected. My d-i-l said that the nurses were amazed at how quickly I was able to get rid of that thing.
One issue I haven't noticed on the boards is the importance of respiratory therapy. I remember now that I was under an oxygen tank, had respiratory therapy throughout my hospitalization and was given a breathing exerciser to use for awhile at home. (I have no recollection of the time frame of any of this).
Malka
Malka- my husband only had a soft removable cast on his leg while in the hospital. It came off before he left and he really had no restrictions on bathing except for weakness in the beginning. He has no issues with his donor leg at all now. Just a small scar to even indicate he had surgery on it. He was not given respiratory therapy at all and the trach site healed quickly once it was removed. Good luck, you'll come through with flying colors.
Sue
From my experience to have the cards may be the best suggestion the white board and note pad were good but I seemed to be so out of it I thought I was writinging clearly but is was just scribble or it started out fine and by the end of the word or note was illegible...everyone just laughed and blamed it on my uncoordination...which was true but I think it was mainly to do with the drugs...so the cards are a great idea. Man I was really out of it for at least a week so much I don't remember...this was a good thing...The best gift in the world not to remember
Update - The surgery has been rescheduled for January 5. It was supposed to be Dec.11 but the OR the doctors wanted wasn't available for the length of time needed. I got a call Fri. that it would be moved to Fri, Dec.12. I told the nurse that would not be good because it was too hard on the family. Sabbath starts at 4:44 and with the surgery starting at 7:30 AM and lasting at least 7 hours, my husband would have to sleep over in the hospital. There are several options of places for family to stay but he could not use elevators on the Sabbath and would have to go up and down stairs.
Maybe I will use the extra time finding a way to go up and down the stairs at home without putting weight on my leg.
Malka,
I had the very surgery you are going to have. Be sure you take a notepad and pen with you. You will have numerous drainage tubes at first and writing is the most effective way of communication for the first few days. The leg where they remove a part of the bone was not a major problem. They have you up and walking the next day, with a physical theripist at your side. The more walking you can do the better off you are. Even if you just walk around the hall of your room will help you gain your strength. Two weeks hospital stay is the average hospital stay. Staying positive is VERY Important. Each day tell yourself how good you are doing, one day at a time. Bless the little thing you were able to do today that you couldn't do yesterday.
I wish you the best of luck. Time passes quickly and you will be out of the hospital and on your way to recovery. Don't hesitate to ask any question that comes to mind.
Hacklene
Malka,
Hang in there and Martha sends her regards. She wants to tell you how much she appreciates what you did for her and she is almost finished her chemo but I can't get her to sit down and use my computer. She thinks she's going to blow it up or something. I'm still trying though. You know me I don't give up.