has anyone had gct of mandible?

[tracy h]

Hello, my name is tracy and i will be having surg. in 2 wks to remove most of my lower jaw due to gct. they will be reconstructing jaw with bone from my lower leg as well as an artery from my leg to replace in my jaw/neck area. has anyone had or heard of anyone having this type of surg.? it is so hard to find any information re: gct of jaw. thank you very much if anyone has info.

[caroline]

hello my GCT was ( and i say was with hope cos i go for an check MRI tomorrow ) my Left Temporal Bone in my skull base so about 3 inches up from yours, I have had 2 operations lost my hearing on the left hand side and have numbness and tinnitus and a few balance issues, they followed this with 5 weeks of radiotherapy which i finished last February, they thank goodness managed to preserve my facial nerve thanks to my surgeons still tingles a bit now and then especially when i am tired !!. But all in all i am back at work , lost 28lbs in weight doing everything normally taken up my old sport of long distance walking ......walked 32 miles the other week :-). I have decided its not going to beat me whatever it throws . I dont know if ur from the USA or UK i am from the UK and treatments seem to differ , i wish you well if u look on my profile u will c my story and my impressive scar which u cant see at all now because of my hair . good luck keep in touch gct is rare but gct in the skull bones is even rarer , u r the first person i have spoken too since i was diagnosed 2 years ago xx

[tracy h]

Hello and thank you very much for replying & sharing your information with me....i read your profile and saw your pic on there of your incision....wow you have gone through alot!!! i hope your test went well also. i am from the US in upstate new york near rochester. i am a nurse...my last day of work is oct. 10 th then surg. on the 12 th. the doctors say i will be in intensive care for a few days then reg. room after til i go home. i will have a feeding tube and they said possible trach to breath due to extreme facial/neck swelling. i will be having a fibular free flap also on my right leg they said (as they will be using part of the fibula bone to go in the area they will be removing of my mandible/jaw area as well as an artery from the same leg ). so i am afraid of everything that my future holds for me with this gct... yes my doctor said this is very rare. i find that i am very emotional now because of the possible outcome of the surg.i am afraid i will loose alot of feeling in my face.i have some nerve damage now near chin area from when they did my biopsy. well thank you again and hope to keep in touch in future.

[caroline]

Hi Tracy, You have a tough time ahead and of course ur scared u wouldnt be human if u wernt terrified however You will get through it. these surgeons are so skilled its amazing .I am sure that you are worried about how your face is going to look and it wont be pretty at first but ( i looked like SHREK ha ha ) the swelling will go down and the scars will fade ( mine is so faint now just a thin white line ), often they can operate from inside your mouth to reducing scaring cant they. The left side of my face is numb due to the tumour being wrapped around my facial nerve but some of the feeling has come back as the nerves have regenerated and i have just got used to the numb bits . I can still smile which is the first thing i asked the recovery team when i woke up from the operation , ( and boy was the theatre charge nurse handsome !!) When i was first post op and was healed enough to sleep on my left side it felt as if i was sleeping on nothing !!! but it has improved. Spookily ur having ur operation on the same dates i had my operation last year so i am sure thats a good vibe and the other weird thing is that i am also a Nurse !! I went for my post surgery post radiotherapy follow up scan yesterday and it was clear halleluah , I dont need to go back for a year .

So it can be treated ,dont forget although its classed as an agressive tumour it is benign and has only a less than 1% chance of it spreading anywhere else,My surgeon said facial GCT act quite differently to one in long bones and he is convince the radical surgery and radiotherapy i have had will keep it away. So tracy its going to be tough, its not going to be nice BUT you are in good hands, you will come through, and you will get rid of that pesky intruder in your jaw. I will send positive vibes and prayers on the day and after and will be waiting to hear how you are recovering.

With all my best wishes that this time next year you will be in a good place , happy and healthy with a postive future ahead

caroline xx

[Pam]

Tracey, I will also keep you in my thoughts and prayers on October 12th and during your recovery. You and Caroline have both been through so much and I'm very glad you two have each other, to compare your GCT experiences and recovery. My GCT was in my leg, a much different ordeal... but I just wanted you to know I'll be sending good vibes and prayers coming your way too. Best wishes and take are! Pam

[tracy h]

hello and thank you very much for your prayers.... i too am glad i found this site and being able to hear caroline's story ( as well as reading yours & others) it has been nice to know that there is alot of support on here and its given me alot of inspiration that i can remain strong and beat this too.

[tracy h]

hello again, wow that is really odd and spooky like you said that the surgical dates match of yours and mine!! and also can't get get over that you are a nurse just as i am....i went to see the surgeon few days ago on thurs. and they said that i will be in surg. for 6- 8 hrs and that they will be placing a trach in during surgery so that i can breath due to all the swelling and location of my operation site. they said that before i go home it will be removed. they will be cutting me from the outside right down the middle of my lower lip straight down my chin then 1/2 way down my neck then veering over towards my left side of neck few inches below my left ear. they said it will take 18 months for the incision area to fade and i will be able to get lower teeth implants in 1 yr from surg. date. i will have alot of swelling that should go away by 3 months they also stated. will be eating soft foods for a long while too.... well i am glad that your test results are good....i pray for you that they always remain that way. thank you for sharing all that you have, it has helped me a great deal. thank you, tracy

[caroline]

Hi ,
oh tracy Uv a tough time ahead your op is a biggy isnt it ,tho its amazing how little time it will take to recover and u will be home before you know it xxx. Mine was 7 hours but i cant remember it of course !! it was worse for my family waiting for me i suppose its a whole working day but to us just like a flash. I have a patient who had a tumour on his tonsills and has a scar down the front of his chin and up to his ear and now it is so well healed its actually hard to see it , he massaged it daily with Bio oil ( i dont know if u can buy this in US) and i was also advised to do this and it is amazing how much it helps. OK will be sending so many positive vibes across the Atlantic you cant fail to come through it all with good results , I cant advise u anything else, except take all the advice you get from the team ( u know what us nurses are like ha ha good at giving advice but not good at taking it ) Rest loads after (i did push myself too much and suffered for it) and most of all even through the bad time stay positive i really believe that helps xx but at the same time dont be afraid to cry when you need too cos it isnt fair and we need a release sometimes ,

with love and best wishes and many many positive thoughts ,

Caroline xx

[tracy h]

yes that is so true about nurses making the worst patients....hahaha. i have never heard of bio oil, but i will look into that...sounds like it is a good product. thank you for your kind words/thoughts/prayers.... tracy

[Kerri]

Tracy,
My heart goes out to you and what you are going through...You will be in my thoughts and prayers this week!
God bless,
Kerri

[tracy h]

thank you very much.

[Pam]

Thinking about you on the eve of your surgery... sending the best positive vibes to you and your surgeons for tomorrow's surgery. You are in my thoughts and prayers! Keep us posted on your surgery and recovery as you feel up to it, take care.... Pam

[Tara]

Thinking of you today Tracy, hope all goes well and wish you a speedy recovery. Love n hugs

Tara
x