HI Jim,

Thank you for your kind response. Looks like you've been posting for a long time. What a gift this is! I feel so encouraged by everyone and comforted, too. Your good wishes are very much appreciated.

Anita

Hi Karen,

Thank you for sharing your story with me. Wow, you've been through a lot! I am going to send you a PM as I do have some questions. I just wanted to let you know how much I appreciate the time you spent responding to me.

Anita

Hi Anita,

Where is Clark being treated? As you can see I live in Yardley, PA and was treated at Fox Chase in Phila..

I thought I would mention that you might find it easier to respond to posters all in the same post.

Jerry

Hi, Jerry,

Thanks for the tip.

Clark is being treated at Abramson CC at HUP.

Anita

Hi Anita,

Welcome to the board. I live in Trenton and was treated at HUP and am very happy. Who is his doctor?

Take care,
Eileen

Anita,
I had the fibula reconstruction of the mandible in January and am very pleased with the results. It is a very complicated but "elegant" surgery. I am amazed with the whole procedure. It is hard on everyone - the surgeons put in such long hours of complicated work, the family waits forever and then the patient is in the ICU for days and then in the hospital for a while and there is the long recuperation at home and afterward. It seemed much longer and more involved than the original surgery.

HOWEVER - the fears and unknown factors of cancer aren't there. I feel that the surgery was very much worth having and am glad that I did it. I found that my speech and swallowing improved and am pleased that the center of my chin is almost perfectly lined up under the centerline down from my nose. I am disappointed that I am not a candidate for furter prothodontal dental work to give me more teeth but am reasured by the fact although it did cost a lot for dental apraisals and I mayy have be able to recover some of the $$ I had the the best possible advice in that area.

If you would like to talk, pleas PM me.
Malka

I'm glad you posted Malka. I wondered how things turned out for you. Congrats there lady.

Eileen,

Head and Neck --Weinstein
Rad Oncologist -- Quon
Plastic -- Low
Prosthodontic -- Schaffer
Oral Surgeon -- Carrasco

We actually haven't met with Carrasco yet. Appt this Thursday. We are very happy with the people at HUP. Clark's team has been wonderful.

Malka,

It's so good to hear that you are happy with the results of your recon. Did you have a trach for this procedure? And how much swelling did you have? We are both feeling really positive about all this. Just want get as much info as we can about what to expect.

Anita

Anita,
Yes,I had trach with both the original surgery and the reconstruction. I would ask your doctors exactly what to expect as we all heal differently. I happened to have done very well with the trach and healed quickly. The one part that I did not like was the surgical boot. I was very uncomfortable with it and my back hurt when I used the walker until the physical therapist who came to the house ordered a juvenile walker because I am 5' tall and the regular one was too high. Once the dr. told me that I didn't need the boot 24/7 I began using a plastic ankle brace and crocs with thick socks. After my first followup visit the dr agreed that was OK for me.

The swelling in my foot lasted for many months. It has finally gone down. I had the surgery in January and in May I bought a pair of good pumps for dress and they seemed Ok in the store. When I tried to wear them, I could not get through dinner. THat same week I briefly wore loafer type shoes for a few hours a couple of times but found the crocs and thick socks I have been wearing for the past few years did better (lace-ups probably would have worked as well). I did not have the possible nerve damage which causes the big toe to droop.

Malka,

You have given us a lot to think about and I need a few days to respond. Please know that I just need time to gather my thoughts. This is so big!

Why did you have the surgical boot? I thought that they use the fibula for grafts because it is a non weight bearing bone that we don't really need. I guess I expected that Clark would be able to walk unassisted right after surgery. Boy, I must sound like such a greenhorn! Hah!

We have an appointment tomorrow with the oral surgeon. We will ask about the trach. Clark's procedure is on the 16th of November. In addition to the fibula graft that the plastic is doing, the oral is removing 2 molars and may be doing a "release" which sounds like it may help loosen up Clark's jaw.

I'll let you know what we learn tomorrow.