Christine,

I have not seen my surgeon yet, he has been out of town. i see him today at 2 pm, so i will get to ask questions. Monday i will see another doc for a second opinion. i assume at some point soon they will be doing scans.

According to my surgeons secretary he wants me to see other doctors at johns hopkins as well.

The doctor who did the biopsy doesn't operate anymore, but knows a lot about it. he is my oral medicine doctor.

I honestly just want to get started and get the cancer out. I am worried about how long it has been there. was it there in january when i had my last surgery?

i will write after i see my surgeon.

Gina

Gina, best of luck with everything, it is a lot to deal with it!

I met with my surgeon at johns hopkins thursday. he wants to remove my right lower jaw and replace it with a bone in my leg. I will get implants as well. they are going to take skin, tissue and an artery from my leg and reconstruct my jaw. i need to get a pet scan to see if the cancer has spread and an MRA to make sure i have two arteries in my leg (can't take one if i only have one).

And they are taking skin my hip to cover the area on my leg. it said i will be limping for awhile and the swelling will go down in about 6 months.

The surgery is on the 26th and it will last all day apparently. i will be in the hospital for 7 days approx. i will have a g-tube for a few weeks. he said if everything goes well (and that is a big IF according to him) i should be able to return to work in approx 8 weeks.

Those are the highlights i think, it's all overwhelming for me. I don't know how to process all of this. So for now i am trying to maintain some sort of normal life, but i am struggling.

Gina

Hi, Gina,

My husband had the same surgery that you are having. In November, he had a fibular graft with a free flap from his right leg. Then a skin graft from his right thigh to cover the donor site. It was a long surgery but a successful one. They removed the compromised bone, realigned his jaw with a titanium bar then placed the fibular bone with the free flap. It is a challenging procedure but he did well. Prior to his surgery, he was not able to eat because his jaw was out of alignment. We were really pleased with the results.

The pain in his leg was worse than the jaw discomfort. Clark limped a bit, too. He also has a PEG tube. Not bad at all as he was not able to eat by mouth right away.

You can do this. It will be a challenge but it is doable. You will need some help during your recovery. So take advantage of all the offers people make. Will you be getting a visiting nurse when you return home?

Pack on some calories now and line up some friends, family to help you.

Wishing you the best with your procedure--
Anita

Anita,

thanks so much for you post. it helps so much to hear about others going thru this and making it out the other side ok. i guess i would feel better if i could do this now. waiting is difficult for me. I have a great family and friends, they always take good care of me when i need their help. can you tell me about the swelling in his face? how bad was it? emotionally how did he handle the long recovery?

thanks so much
gina

Gina,
I had the fibular replacement last year. The surgery is indeed long but today I am doing very well. Do line up help for after. I am sorry that I did not ask for home assistance with housekeeping as one of my doctors suggested. I had a visiting nurse and physical therapist for a few weeks. Although I had ocupational therapy in the hospital only one home visit was required.
The biggest problem I had was that we have a two story home and there was no way to set up a place for me downstairs so I needed help for a while to let people in and out and to bring my walker up and down stairs and to bring me food. This was only for a very short while.
I also had a problem with getting into the tub. The tubs were too high for a shower bench which fits over the edge so I was stuck with just washing up. Because we have sliding doors on the tubs and I did not see the sense of taking them off to remove the frame, storing and then putting them back on a tub for a few weeks until I could put weight on my leg. After about a week at home I finally decided that the toilet was close enough to the tub that I could put the lid down,sit there, fold a towel over the door frame for cushioning,put my weight on the good leg, sit on the towel, swing the good leg into the tub and then stand on it and then very carefully shower.
I would recommend Crocs and thick socks as they can accomodate the swelling in the foot which persisted for many months. Also try to keep your leg elevated as much as possible.

Today, I am pleased with the results of the surgery and feel that it was worthwhile.
Best of luck,
Malka

Gina,
I'm right behind you. I just had a PET yesterday and will see my doctor on Friday for the results. This is my second opinion and I am prepared to go for a third. I already know I need the same kind of surgery as you and soon. Good info on this forum, helping me as much as you and, of course raising more questions. I too am very scared but coming here helps ease the fear as I grow in understanding what to expect and what questions to ask. I'll be thinking of you and following your progress here!
Pat C

Gina,

The swelling in Clark's face after the jaw recon in November was minimal. And he did not have much pain. His leg was the more uncomfortable of the two areas. Getting around was slow and painful. Well worth the time and effort though. He can eat better as a result.

Emotionally, he did well. I think the more you know before surgery the better, as you are doing now. He did have some days when he would get frustrated and I had to take the hand mirror away for a while. The patch of skin that will cover your jaw will be a different color. That can be camoflaged with products. Until now, Clark did not use them but he probably will for a wedding we will attend at the end of April.

Keep in mind that healing will take time and that this surgery is to IMPROVE the quality of your life.