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Joined: Apr 2020
Posts: 2
Vijay58 Offline OP
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Joined: Apr 2020
Posts: 2
Hi!
I’ve been diagnosed with Adenoid Cystic Carcinoma in January this year & my Oncologist has recommended to have surgery to remove my left parotid gland with reconstructive surgery which include a gold weight placement for eyelid & a sling placement for jaw dropping. Is Gold weight for eyes a temporary support until normal eyes functions return? Is facial malfunctioning such as smiling permanent or the normal functions return after certain interval.
If anybody went through the same procedure, could you please share your experience & facts to alleviate my confusion. This will help me in reaching the tough decision for surgery in the near future.

Thank you with anticipation

Vijay


Seeking your support to fight Adenoid Cystic Carcinoma(AdCC). Left Cheek discomfort for the last 2+years. Diagnosed January 2020. Hesitating about Surgery because of apprehension that’s it will compromise facial ADL due to the involvement of facial nerve(s) with Parotid Gland.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Hi Vijay!

I just replied to your first post about how rare your ACC is. Unfortunately, our site deals primarily with oral cancer which is what almost all of our members have, not ACC. In a search of our approximately 200,000 forum posts to find more info about ACC, only 3 posts came up. Im very sorry but its highly unlikely anyone here would be able to answer your questions as we are not familiar with your illness. At OCF we take great pride in only providing correct and up to date medical info on our site. When asking questions about an illness we do not have any members posting about, we wouldnt be able to provide any guidance to you or anyone else on this topic.

One thing Ive learned in over the 13+ years Ive dealt with OC is its always best to ask the medical team clarifying questions when at your appointments if you dont understand something. This is especially important when its regarding such a rare disease where online info is scarce! If unsure of your medical teams skill then try seeking a second opinion from another qualified doctor at a different facility is what we do in the US.

Im very sorry we are not able to assist you!!! Best wishes with everything.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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