When You Least Expect It...

but what is "today" one day after surgery (the worst day is day two for pain, I think)...but what is today won't be what is down the road.  I was only threatened with a dissection, but never did have one....but many on here did have one.  The PT will get that arm going again, and the numbness will recede.  On one hand I'm sorry you weren't prepared, but I guess they really didn't know till they got in there....on the other hand...YEAH they got all that "Jack" out and I'm sending prayers and positive thoughts that the tumors are encapsuled (sounds like Jack was having a merry old time growing while you were waiting for this surgery!!). 

The one thing that everybody on here seems to say about the scar is that it disappears almost entirely...that in short order all you have is a line there.  The "experimental days" are short lived.   PT will help you regain the movement in your arm...There are a lot of folks here who have had the dissection that can give you tips and tricks to get you moving again.

Thank you for the update....I had you tucked in my pocket....think I'll keep you there.

p 

You are about describing my radical neck dissection, the one that was done  with my first surgery back in 1998.  Don't panic, things will improve right along.  My dissection took about 6 hours, leaving me with a scar from my mastoid process to my clavical, and an anchor under my chin to the midpoint.  About thirty five staples worth.  The numbness over that side of my face, ear, neck, and upper chest was pretty bothersome.  And the three drains was pretty impressive as well.  I looked like Frankenstein.  My parents drove me from St Louis where I had the surgery, back home, about six hours away.  They stopped to eat in a truckstop, and hou should have seen the truckers gawking at my staples, lol.

All of this stuff gets better. The drains come out in a few days, the pain subsides pretty quickly, the numbness, believe it or not, fades away.   I am never aware of it any more, can feel normally on that side of things, although I don't sweat on that side of my face    So its time to chill out and recover some.  It will all work out ok.  Heck, nowadays, having had a way more radical surgery than what I just described, complete with splitting my jaw, removing the floor of my mouth and reconstructing things,  given healing time, people really don't notice the defects.  They honestly aren't that apparent.  

Now be a good patient and take your pain medicine.

Pat

I also had a neck disection, not as bad as yours, but know about the drainage tube and they scar.  I am three months out from the surgery and the shoulder and neck are slowlly coming back.  I would say I have about 70% of my moition and strength back.  The docs said it will take a ffew more months to get back to close to normal.  My neck sometimes swells up then goes down again for no reason that the docs can find.  You have been through a ton of stuff, it will get better.  They gave me some easy arm streching exercises which I do in the shower and they have helped.

I am trying one of the stationary bikes with the handles that move to excersise my arms and if I go slow it works and helps quite a bit.

Best and hang in there.

ditto1 said:

Fishmanpa

Wow all I can say is any man that can type a full story about what he just went thru which was needless to say tough, especially the cath removal, ooch is a better man than I .  I told Diane he is one tough dude, I dont think I could even open the computer let alone update us all what he just went thru, so in my opinion Jack does not stand a chance messing with you.   Seriously Diane and I are praying for you and your better half, but again You the Man..........

for both what youwent thru and how you must be to have handled it the way you did, I agree with ditto1, I was in no shape to communicate like you after my neck resection, and I didn't even have a catheter. Most likely your neck will heal just fine. I had an ugly scar that is still pretty noticable if you look for it, but its not the first thing you see when I say hello. My right ear is still numb but I have decided I don't care about that,I can hear, and it doesn't hurt, so I'm OK with it.. I lost some reach and strength but not enough to interupt most of my activities. Odds are your body will slowly recover from the surgery, hoping that the tumors were totally removed. Good news about less rad, that was what really got me so the less they need, the better..Stay strong..Ed

am amazed that you're able to type about your surgery, and the fact that you're home. My surgery, that removed my epiglottis, was a 9 hour event , my cut was from one ear to the other, no stitches, staples...glue!! I had four of those drain ball thingys and was in the hospital ( The James, Columbus ,Ohio) for 8 days....my left ear has remained numb, but I can hear from it..just feels odd when I put my earrings in. Scar in in neck crease so barely noticeable, hope you have a quick, uneventful recovery, don't try to rush the healing, you have been through major surgery Captain America!

George_Baltimore said:

Hi T

Glad that much of your journey is over.  Just out of curiousity, what was the name of your doctor(s) that performed the operation?  One of the ones that did my mandible was out of the OTO dept. at Hopkins.

I guess I am glad they put me in a coma for 4 days following my 19 hour surgery so I didn't have to see all of that. If I can suggest anything, as soon as your doctors allow, start to exercise opening your mouth, I regret that I didn't know that and now my mouth doesn't open as wide as it used to. I too had shoulder pain and could not lift my arm to wash my hair but with a few therapy sessions it was back to normal. Prayers that the labs all come back in your favor.

fishmanpa said:

The Team

Hi George,

The surgical oncologist is Dr Jeremy Richmon, one of the top in the country cincerning the DaVinci robot. Chemo/medical oncologist Dr Christine Chang. Radiation oncologist Dr Harry Quon. There is a speech/language pathologist and a physical therapist as well as oncology nurse. I met so many doctors, interns and nurses my head was spinning. Most of them are "kids" as I'm old enough to be their father! I was expecting the theme from "Scrubs" to start playing

"T"

Hey T

It is SO critical for one to know their care is in the best of hands. Glad you feel that way about your team. I found the "intern" thing quite annoying, even though I understand they are being exposed to new and different and maybe unusual conditions. 

I know you feel a bit ambushed by your current experience. I had a "not knowing" close call to but did not suffer any consequences when the wreck blew by me. Do remember that doctors and machines are still limited to what can be done with our cancers and as has just been mentioned even the gold plating on them does not assure it rubs off. 

Personally, my view from what I have learned thus far is there is really no new significant protocol in any phase of testing that has demonstrated any improved outcomes for what we have (HNC). If there were we would have some examples here and I can not recollect a single plan that had some something unique element. Not just some variation of known drugs or therapies but something really differernt like drink some gene juice or get injected with some stems cells in the neck.

My surgeon who fellowed at MSKCC told me the only trials are good for now is to vary the existing protocols to lessen the side effects and that is all I have experienced as well. My own treatment is undergoing a slight variation of the typical induction TPF as my MO wants to lessen the side effects while maintaining the efficacy of the drug therapy.

Hang in there! don

Hey Fishman, I am sorry to hear about your surgery and its extent. It is likely a great source of comfort to know that your Alien is now out. I was lucky in that we had already done the tonsillectomy and the nine weeks of rads and chemo before surgery and then did a scan. Thus we were pretty sure that he was only going to go in and clean out junk. I will admit that for the week the tubes were in I did not go out in public much. But soon after that, I was out and about esp once we got the staples out. And a couple of weeks later was down in Mexico City for work. That must have been quite frightening for them all even though by then it just looked like someone had slit my throat -- which was true even if intentional. By the way, when they do the dissection after rads, they have to wait longer because of all the damage to the skin and they have to wait longer to take out stitches/staples. I include a couple of photos from then and will see about one from the present.

Probably from the time a month or more later when the damage and swelling went down enough for it to be touched, my wife has been massaging my neck nearly every day. He took 26 lymph nodes from that side and so, until the system found new paths, I had bad turkey neck and a big wattle under the chin. The daily massage moved the fluids and opened pathways and the Vitamin E oil she applied on the skin helped the scar to heal. It took probably a year for all the hard scar tissue along the suture to fully break up. Now two years later (last week!) it is nearly invisible and I actually have a chin. It is also neither blown up nor a big cavity, both of which it was at different times. And, because he did not have to cut anywhere near as much on me, only a few small areas are still numb where originally it was from eartop to chin. But it takes tremendous patience and dedication (nearly) every single day to achieve this. I can tell you that if I had to do it all myself, it would never have happened. It was my lovely wife.

On another note, I see more Baltimore-cented people on here (at least for treatment). If anyone wanted, I would come up there to meet when people are in town. We could go for a few drinks and maybe a steak! (Ha! Those days are just a fond memory now. How about a milkshake and a bowl of soup?) We could invite Paintslinger and George and whomever else. In any case, take heart in that you are on the road to complete recovery. Doug