| Joined: Sep 2011 Posts: 35 "OCF Canuck" Contributing Member (25+ posts) | OP "OCF Canuck" Contributing Member (25+ posts) Joined: Sep 2011 Posts: 35 | Anybody develop a mucocele after surgery or treatment? If so, what was done about them? I have a small one and a large dime sized one on the lateral side of my tongue where I had surgery. Both have been there on off for about 1.5 months and the dime sized one only got larger since yesterday. I have a sinus infection and am on abx and nasonex which probably is contributing to the sudden change in size. Apparently they are typically harmless. I am going for revisional surgery in March to improve the ROM of my tongue and hope this will eventually ease my positional nerve pain.
Any thoughts?
Tracy Dx @ age 47 Single No dependants NS/Social ETOH Clinical Study (early detection) Dx July/09 Mod. Dysplasia (lichen planus) Dx Sept/11 TisN0M0 SSC Lt Tongue Sx Oct/11 CO2 Laser Glossectomy Sx Mar/12 Release of tongue anchoring (Skin graft) Lingual Nerve Damage
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Sorry you are having a problem with mucoceles. I havent had them at all so Im unfamiliar with it. I cant remember anyone else mentioning it either so its not that common. When I looked up info, it sounded like it was nothing to be worried about. It looked to be very uncomfortable. Hope you are not in alot of pain from it. Here is the link for the info I read. Wikipedia mucocele info
Last edited by ChristineB; 01-15-2012 07:34 AM. Reason: add link
ChristineSCC 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 | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Tracy
Short answer: Yes, I did just last month. NOTHING is being done about it but if I were having surgery, I'd have them taken off. Long rambling answer: IMO, It sucks to have one especially since there are different approaches but I'm going to stick with my ENT's advice right now. Last month, my Christmas spirit was dampened when my ENT told me I had developed a mucocele at the base of my tongue. She said it was the result of a blocked salivary gland. She went out of her way to empathize that it was not a sign of a recurrence. She said in her experience they were always benign and would resolve on it's own. She thought that surgery was unwarranted and could compromise my ROM even more if there were complications (and since my prior surgery had major unexpected complications, neither her or I feel like gambling) But, she also said that it was going to light up big time on my annual MRI I get next month. She insisted that I make an appointment the same week I schedule the MRI because the radiologist's report is going to have to say: [quote]There is a new cyst/tumor on the base of the tongue adjacent to the former cancer that should be checked immediately[/quote]
However, I would ask the surgeons now to consider taking out both of them with your revisional surgery in March. It would not be a major matter in that context. You have time now to write, send an email and follow up. Otherwise, when you do have a follow up scan: CT, MRI or PET, the mucocele will light up and Trust me, that is NOT a good feeling Charm
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2011 Posts: 35 "OCF Canuck" Contributing Member (25+ posts) | OP "OCF Canuck" Contributing Member (25+ posts) Joined: Sep 2011 Posts: 35 | Thanks! My ENT is aware of them...he has seen them! He is admamant that their was no damage to my salivary glands as my surgery was so superficial. Then again he wasn't expecting me to develop significant adhesions that have anchored part of my tongue and twisted my tip (which I think are contributing to the blocked glands) I am sure he is a little p*ssed that he didn't do a skin graft in the first place as he originally intended. I see this morning I have another mucocele forming! I know antihistimines can contribute to mucoceles and they are not typically painful but this 3rd one rubs up on my sharp bottom teeth and so I am popping my T3's. I am taking tomorrow off work due to my sinus infection so I will call his office. He said he would watch them. But never said watch for what? He is so evasive, you cannot get a straight answer from him. So nice that you have an empathetic surgeon who reassured you that the mucocele was just that! I guess cause I am a nurse mine doesn't bother to explain much to me (gee thanks :P) I always hope he isn't this flat with his other patients. I am aware that mucoceles show up hot on scans. I am not scheduled for any at this time, perhaps closer to my revision sx. The mucoceles will obviously be dealt with during the sx if not before, if they are still there. Which might complicate things?? Did your ENT give you any suggestions on how to minimize them? Keep well hydrated? I read some suggesting Sodium compresses to draw out the fluid? Avoid alcohol (duh!) and antihistimines. Willing to try out any homemade remedies out there! Bring them on!!  Thanks again!
Tracy Dx @ age 47 Single No dependants NS/Social ETOH Clinical Study (early detection) Dx July/09 Mod. Dysplasia (lichen planus) Dx Sept/11 TisN0M0 SSC Lt Tongue Sx Oct/11 CO2 Laser Glossectomy Sx Mar/12 Release of tongue anchoring (Skin graft) Lingual Nerve Damage
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Tracy
I know one should never confuse correlation with causation, but my ENT surgeon is female while all my other doctors are male and she is the only one who worries about how I am feeling or how I will react to diagnosis. Unfortunately she did not give me any hints or suggestions about how to avoid these. Perhaps another OCF member will chime in who has had this same issue, but it may just be you and I kiddo. For what it's worth, I did have the skin graft on the base of my tongue but it did not overcome the removal of the muscular base of tongue so my ROM is similar to that of an anchored tongue. I have not done any antihistamines at all since the cancer so that can't be a causative factor for me. I don't think removing your mucoceles would complicate the surgery from what I understand. They always tell us it won't be easy, but they don't tell us just how hard this is. Keep the Faith Charm
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2011 Posts: 35 "OCF Canuck" Contributing Member (25+ posts) | OP "OCF Canuck" Contributing Member (25+ posts) Joined: Sep 2011 Posts: 35 | I take it, if the mucoceles are there still in March, he will deal with them at the same time as the revisional surgery. I saw my ENT again and he is comfortable leaving the mucoceles as they are. Unfortuately they compromise my speech which makes it difficult for my students to understand me sometimes and eating has become difficult again due to pain. :P
I was having a little pain there but now it's worse. Pain at the base of my mouth and jaw. He checked my nodes and nothing stood out to him. Just hoping it settles and its all part of this sinus infection. My ENT is just taking a see how it goes approach. The T3's help.
Again Folks....any ideas for home remedies are welcome!
Tracy Dx @ age 47 Single No dependants NS/Social ETOH Clinical Study (early detection) Dx July/09 Mod. Dysplasia (lichen planus) Dx Sept/11 TisN0M0 SSC Lt Tongue Sx Oct/11 CO2 Laser Glossectomy Sx Mar/12 Release of tongue anchoring (Skin graft) Lingual Nerve Damage
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