Hello: I am the spouse of a 65 year old, otherwise healthy guy, who had a sub-total glossectomy almost 3 weeks ago, with bi-lateral neck dissection. In pre-surgery exams and biopsies, it was determined his tumor was of a genetic predisposition type. A week after his surgery they were thinking he might go home soon. When they were attempting to change out his trach from a cuffed version to an un-cuffed version (what I call the "going home trach") he coughed and instantly had a vascular blow-out of the vein that was supplying the blood to the graft/flap. He ended up needing three units of blood as a result. It was horrifying to say the least. He was immediately in emergency surgery and during this procedure they discovered necrosis of most of his remaining natural tongue, and they had to remove it. So, they basically revised the original surgery to a total glossectomy. Emotionally for both of us, it was devastation upon devastation. He is home now walking around very well, getting a just a tiny bit more eager to do some "normal" life routine activities (which I take as a good sign). He isn't going out yet due to getting used to having a trach and abdominal feeding tube in a home setting. He has no problems breathing on his own (never even did in the hospital) so we are starting the intermittent capping of the trach to see if we can get one more "tube" out of him! I am struggling more than any time in my whole life to research what chance he has to ever eat by mouth or speak anything again. It can be quite consuming. A few days after the original surgery they did some speaking tests, and it was incredible to hear quiet but totally understandable few words. On the day he left the hospital (which was a week after the emergency surgery) they tested his speech again and I was devastated to hear simply garbeled noises. Any insight some of you may have would be appreciated. We were just beginning retirement. I never thought in my wildest nightmares he would be "reduced" to where he is today.

Hello KevinJMS,

That was a horrible ordeal, I am so sorry you guys are dealing with that.

Does that mean he has lost the grafted flap too then too? (It kind of seems like that, that the graft was attached to the remaining tongue and the vascular blow out supplying blood to the graft, and then the necrosis of the remaining natural tongue, seems like that's what the graft would have been attached)?

Yeah that's a question for the expert surgeons. It might be a situation where once things are stabilized and the cancer concerns are controlled reconstruction surgery later? Not sure if that's something dealt with semi-regularly at Comprehensive Cancer Centers or if that may be best done at like the top CCC's with a second opinion or consult with someone who says they have high confidence in being able to get a flap back allowing swallowing and speaking in the future.

Sorry I have no experience with anything like that, just wanted to give a response so that you know you've been heard.

That's a rough go of things. Hopefully the both of you have a good support network of folks assisting with things.

Glad he is ambulating well at home at least and trying to get used to the new tubes and tube feeding and all that.

Did the hospital or cancer center have any support groups or social workers or that kind of thing?

I'd be asking all those questions to your surgeon(s) and seeing if there are any uber-experts they might refer him to if it is something they don't normally do.

Hopefully you kind find a bit of peace and solace in each day amidst the chaos and shock, try to carve out what enjoyment you both can.

Praying he finds some healing and good news with treatment progress and future options for a reconstruction.