On 8/17, I had TORS (Trans Oral Robotic Surgery) at Johns Hopkins to remove MEC at the base of my tongue. It was a lot like the tonsillectomy I had back in June. They found that the remaining tumor was .5cm, though the original size was probably more like 1x1x2, before it was cut from the tonsillectomy (non-oncological procedure).

They put a nasogastric feeding tube in while I was under. For about 24 hours after the surgery, I didn't have anything other than pain killers and the tiniest bit of water via the NG tube. The next morning, they evaluated me, and I was speaking fine, and able to sip water. This was less than 24 hours after the operation. At that point, they removed my NG tube, and what a relief that was! I felt much better without the tube in. Later that same day, they released me with an Rx for oxycodone, clindamycin, and a prednisone pack. Well, when I got home, I found out that the clindamycin was giving me hiccup sessions in excess of 30 minutes. They told me to stop taking the antibiotic, and suggested it would be fine to just not take any.

Unfortunately, by the next day I had come down with acute pneumonia, so I went to Prince William Hospital, which is just down the street from us. I spent 2 nights there getting pumped full of Zosyn and azithromycin to fight the pneumonia. The coughing, vomiting, and nausea were far worse than the pain from the TORS.

By 8/22, I was released from the hospital, and put on augmentin and azithromycin, which ruined my stomach. Then the pain from the TORS operation really started to kick in. The scab started breaking away 7 days post-op, and it was pretty gross. It flipped forward, but stayed partially attached, so it was gagging me. Honestly, I almost went to the ER. Mercifully, it broke off to the point where it was no longer gagging me, but a scab continued to touch my uvula for the next few days. By 11 days post-op, the pain reduced greatly, and I was eating much more normal food.

Oh, the results from the pathology were that the tumor was a .5cm intermediate grade MEC. No partial high grade. No perineural invasion. Clear margins.

On 9/1 I even grilled up a strip steak and enjoyed it! It was a little uncomfortable, but not really painful. I was trying to fatten up a little before my bilateral selective neck dissection on 9/2.

I still have some tingling in my tongue, and my sense of taste is out of whack. Sadly, sweet items only taste sweet for the first bite or two, and then it quickly reduces to near no sweetness Some items I'm able to taste sweetness the entire time. It's quite odd. Hopefully this is just another temporary issue.

I'll discuss my ND in the next reply.

I'm only a few days out of my bilateral selective ND, so my opinion of it may be stronger than the TORS. It is no cakewalk. I have 15 staples on the left side, and 10 staples on the right. The way it's stapled makes the skin very pooched out, and the remaining skin very taught. I didn't have much loose skin there to begin with! The doctor made it sound like I would be doing great by today. His words were "I think you'll be surprised how good you feel by Tuesday".

Maybe I overestimated, but I still feel crumby. I think it's the drain tubes. They are very uncomfortable. The good news is that the tubes are coming out in less than 2 hours! I made an appointment with my local ENT to remove the tubes, since the output from each has been pretty small over the last 24 hours.

I hate the tubes. I hate them a lot. Stripping the tubes is painful when you release and it suctions. They're constantly in the way, and I think the right side must be rubbing something inside of me that makes my clavicle area hurt when I do the shoulder exercises.

My ears, chin, and neck are numb. It's a completely bizarre feeling. It's a little uncomfortable to swallow for two reasons. One because of the skin on the outside being tight, and the other is that while they were intubating me, they knocked off another scab, and it caused some bleeding while I was under. I think that's causing me some pain now. It's not bad. I'm mostly just taking tylenol. Once in a while, I will take 1mg of dilaudid, which is the narcotic which has the least nauseating effects on me.

I'm eagerly, and nervously waiting on the results of the pathology report. I will admit that I'm terrified. It's been a bumpy road already, and I can't imagine this dragging out for another few months or even years of recovery from the RT. The thought of it keeps me up sometimes, not to mention the general fear of recurrence. I don't know how some of you guys do it.

The path results should be in later this week, and the staples come out on friday.

Wow... I dont get why they didn't hide the stitches... i was given invisible stitches on my neck. I was okay after the neck dissection frankly compared to everything else they did it was by far the easiest recovery though I was and still am pretty numb! it has softened substantially (my neck) and I now have almost full range of motion back but you need to work at it.

I hope your path report comes back saying you require no further treatment. Take care~

Ok, the drain tubes are out. That hurt like a MF! I was about to see double when he pulled them. Asking me to put pressure on the gauze right after was icing on the cake.

Regarding the stiches and staples. There are dissolving stitches underneath, but externally they use staples for a week as well. I think they decide as they are closing up, because one of the residents said it depends on the patient. All I told them was to use the method they thought would result in the least amount of scarring.

It sounds like you're doing pretty well. I remember what a relief it was to get those drains out! I think you will be feeling quite a bit better in a few days. I hope the pathology report from your ND comes back clean so you can be finished with treatments. Good luck!

My understanding is that people who have had radiotherapy have a much greater delayed healing. They therefore need the staples to ensure the incision line doesn't come apart.

Was just re-reading my post. In case it wasn't clear, I have zero speech impact from the TORS procedure. I'm close to a month post op though. Earlier, like from days 1-10, I had slight speech impediment due to a swollen and painful tongue, but even still, I could talk on the phone and be understood just fine. Keeping hydrated was the key. Force that liquid down, even though it hurts like hell.

Today, my neck dissection incisions feel kind of crappy. They feel very tight, almost like someone is pulling on a noose around my neck. This is even after a warm shower (feels great in the shower), and all my PT exercises.

Okay, it's official. I've decided that recovering from TORS was a lot easier than recovering from the ND. TORS was 2 weeks of recovery, and only like 5-6 of those days was the pain really bad. I could always get comfortable in bed, and sleep the day away. Not so with the ND. I'm still having trouble sleeping. I can get to bed with half a dose of Benadryl, but I hate having to take anything at all.

My ears are the worst. They are super sensitive, especially the insides, and I'm strangely producing more ear wax than normal, so I have to go through the painful process of swabbing them. This also means I'm still unable to lie on my side to sleep, which is what I really prefer to do. Am I better than I was last week? Absolutely. Am I better day by day? Meh. My neck and shoulder mobility are very good though, so thank goodness for that.

Also, in regards to the incision being all puffy, well it turns out that they do that on purpose. The reason is that if they close it flat, the scar will cause it to indent. So they want it to start puffy.

I've also been applying skin colored silicon strips (Scaraway) to the scars. He says this should help reduce the hyper-pigmentation that I'm prone to (Asian skin). It also helps me feel a little less self conscious when I go out.

I'm starting to massage the scars too, though when he showed me today, he did it with a lot more pressure than I was doing.

Glad you're feeling better -