Previous Thread
Next Thread
Print Thread
Page 1 of 4 1 2 3 4
#53674 07-07-2005 06:51 PM
Joined: Jun 2005
Posts: 349
Likes: 2
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Jun 2005
Posts: 349
Likes: 2
As many of you know, I just one week ago had my MRND, along with my RADICAL Tonsillectomy of the Right Tonsill.

Today, I am pain free and able to eat and drink @ 90% normal.

Seth & I walked a few miles along the ocean today with our Black Lab.

Had a great time...so glad to be getting back to "normal".

Still operating at about 90% of my previous energy levels -- which is something considering I lost 18 pounds in the last 8 days...

I have about 80% of the lateral and up/down mobility I had before the surgery, I can turn my head to the right and left nearly all the way.

The only real permanent cosmetic thing I am upset about is the fact that my normally generous smile looks so bad when I try to smile... :-(

My incision points look VERY good. Clean, well healing and no puss, blood or ooozing. They are looking like the scars may not be too bad.

I have a couple issues I wanted to confirm:

1) The right neck is TIGHT and still totally numb, the right cheek was 100% numb, but now 40%, the right shoulder & upper chest was 100% numb, and now is about 80%. My right ear remains 100% totally numb (except inside the ear canal which is normal, along with normal hearing)...

None of the numbness is 'inside'. It is just on the skin itself if that makes sense.

2) My chin and right jaw are slightly painful on pressure, like a bruise would feel

3) My neck at the base of the skull is very tight and painful, like I slept on it REAL wrong for a week or something...

4) I have a tingly feeling on my chin and incision points, like a 9 volt battery feels on your tongue...Plus occassionally, I feel like Seth sprayed me with a water bottle for a microsecond. In fact a couple of nights ago I hit him in my sleep thinking he was spritzing me with water while I was sleeping in the middle of the night.

5) My right neck and chin area is STILL HUGE!!! About 250% of pre-surgery size. Is there's anything I can do for this, please let me know.

6) My teeth and gums hurt a little, and I can only open my mouth about 75% of presurgery size. Is this normal?

That's it, just wanted to run this onto the board and see what everyone thinks.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#53675 07-07-2005 07:13 PM
Joined: Mar 2003
Posts: 1,384
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Mar 2003
Posts: 1,384
Likes: 1
All are things I had post surgery. Many get better over time, some take quite a bit of time. The swelling should go down, you can help it by lymphedema massage, lightly stroking the surface of your swollen skin towards the chest.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#53676 07-08-2005 04:19 AM
Joined: Jul 2003
Posts: 382
Likes: 3
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jul 2003
Posts: 382
Likes: 3
Michael-
Looks like you are having pretty normal results and like Mark stated some areas will take more time to heal. After 3 years I still have numbness in neck and shoulder and the tingles down the arm. Keep working on opening your mouth. As you get into radiation and drinking your food or using a peg tube it will be even harder to open your mouth. Radiation really does a number to those muscles. Can't tell you how frustrating it is to finally be able to eat again and not be able to get it in there! Good luck on your journey! - Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
#53677 07-08-2005 02:12 PM
Joined: Apr 2005
Posts: 44
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Apr 2005
Posts: 44
The biggest lesson Dad & I learned from surgery (like yours) and IMRT is PATIENCE. It's a hard lesson. Your symptoms are much like his were. He is better every day. He started PT 2 weeks after surgery for neck & shoulder (although ENT didn't think it "necessary", he did right the required order) at my insistence after reading posts here and he is soooo glad he did. He kept it up all through radiation, too, even as sore and tired as he was (and twice your age & suffering another type of cancer, too). Hang in there, kiddo. You can do this!


Daughter of 75-yr-old Dad with tongue cancer (T3NOMO) surgery and rt neck dissec 4/27/05; completed 27 X IMRT on 7/01/05; recurrance w/ surgical removal of another SCC tumor on 10/7 (he's also nonHodgkins lymphoma survivor since 1/94)
#53678 07-08-2005 03:16 PM
Joined: Apr 2005
Posts: 2,676
JAM Offline
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
Michael, John had and still has [68 days post surgery] many of the symptoms you are experiencing. He was so swollen after sdurgery that some of our friends and employees did not recognize the pictures we sent them. But most of the swelling is gone now.He still had alot of numb areas. I was interested in your mentioning the tingle thing, as he is getting that in arms and also legs, for some reason. Like you heard above, Patience and fortitude. Joh finished his 30th and last rad today and came home and ate some pasta. laugh Spend more time sitting on your deck. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#53679 07-08-2005 04:31 PM
Joined: Mar 2004
Posts: 117
Gold Member (100+ posts)
Offline
Gold Member (100+ posts)

Joined: Mar 2004
Posts: 117
Michael,

I had my MND two years ago and although it took almost 6 months, my smile did return to mormal, but I still have numbness in my ear lobe, my neck between the incision and my jaw line and my cheek just above my jaw line.

The tingles you feel are your nerves regenerating postoperatively and you will have that go on for a long time, at least I did. I just told myself that it meant something was coming back to life.

Really work on getting your jaw open by opening your mouth as much as you can, then inserting two fingers, one against your upper jaw and one against your lower jaw, and stretching it open. It will feel uncomfortable, but you want to keep stretching it so the inflammation does not settle in your jaw joint (TMJ). If your TMJ becomes stiff, it can be really difficult to get the movement back.

Barb


SCC tongue, stage I (T1N0M0), partial glossectomy and modified neck dissection 7/1/03
#53680 07-09-2005 03:46 AM
Joined: Jun 2005
Posts: 349
Likes: 2
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Jun 2005
Posts: 349
Likes: 2
Amy,

congrats to you and Jon for finishing the radiation tx!

Did he have any chemo? I ask becuase you mentioned the nuropathy and I've heard that some chemo can sometimes cause this (is is usually temporary)...

Is the numbness/tingling painful..?


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#53681 07-09-2005 04:04 PM
Joined: Apr 2005
Posts: 2,676
JAM Offline
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
Hi Michael. John did not have chemo.I'm a little worried today because he thinks his hands are swollen [his wedding band is tight tonite], but he also slept most of the day today, so his circulation is probably slowed down also. I keep picturing you on your deck- I am an ocean freak- hope you are spending alot of time there. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#53682 07-09-2005 06:01 PM
Joined: Mar 2002
Posts: 1,140
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Mar 2002
Posts: 1,140
Likes: 1
Michael, I had all the numbness you mentioned and today although the feelinging in those areas is a tad less intense than on the other side, if something itches, I scratch and I feel it. Took about six months to get that good, if I remember correctly. There is not an inch of that area that is not sensitive to even light touch. Just about the time you begin to get used to it, and you will, you will notice that it is improving. So don't worry. This, like so many other things, will most likely straighten out with time. As Bellarte so wisely says, patience is the name of this game.

Also, listen to Barb about keeping your mouth open. Do this during rad, after rad, and do it a lot. Nobody told me to do that, and it was a lot of work to get my mouth open wide post rad.

Finally, my smile returned to normal and yours will too.

Good questions. While I know you are extraordinary (grin), in this instance you are absolutely normal.

Joanna

#53683 07-15-2005 11:49 AM
Joined: Jun 2005
Posts: 349
Likes: 2
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Jun 2005
Posts: 349
Likes: 2
The "pins and needles" are still driving me MAD!!

They wake me up everynight a few times...

Any ideas?


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
Page 1 of 4 1 2 3 4

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,920
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5