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Joined: Jul 2011
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WarrenW Offline OP
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Another question about side effects. How bad was the pins and needles feel for you folks? This is worse than the TORS BOT procedure to me frown

I feel like I have a noose around my neck from time to time that gets tightened, and then my nerves go crazy on occasion, so it feels tingly. It's extremely uncomfortable. My ears feel extremely sensitive too. No touching allowed! The worst is when I lie down to attempt to sleep. I have to lie on my back, and I still sleep at a considerable incline, but the feeling around my neck gets so bad that it prevents me from falling asleep unless I'm totally exhausted. I'm good about doing my PT, and I have pretty darn good mobility in both my neck and shoulders. I feel little to no loss of strength or movement in my arms.

My surgeon is out this week. I've got an appt with him next tuesday, but I was wondering what other people's experiences were like. TORS was easy compared to this, IMO. There's a peak of maybe 5 days of bad pain for TORS. The ND is lingering discomfort.

Last edited by WarrenW; 09-14-2011 04:17 AM.

Age 35
non-smoker, non-drinker
7/1/11 - Diagnosed with SCC @ BOT, stage 1, lingual tonsil & cyst removed
8/9/11 - Corrected diagnosis of MEC @ BOT
8/17/11 - TORS to remove lesion
9/2/11 - Bilateral neck dissection. All nodes clear! Done!
12/13/11 - PET/CT scan clear
Joined: Apr 2011
Posts: 267
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Posts: 267
After my neck dissection I had the pins and needles and little sharp pains that felt kind of like electric shocks. It was very unpleasant when my husband or baby touched certain spots on my neck. I also had terrible itching in my right ear. The ear was totally numb so I could never scratch the itch.

I don't remember exactly when that all got better, but I know that by the time I started radiation (six weeks later) I was not having those sensations anymore and some of the numbness had gone away. Some areas will be numb forever.

I think the noose sensation from the scar is due to swelling because I had it for a few weeks after surgery but it came back when I had swelling fromyhe radiation.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
Joined: Jul 2011
Posts: 42
WarrenW Offline OP
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Thanks for the info Tracy! If I could just sleep. The on-call doc recommended I take a little benadryl to help til this passes. I'll talk to my surgeon about it next week when I go in to see him.


Age 35
non-smoker, non-drinker
7/1/11 - Diagnosed with SCC @ BOT, stage 1, lingual tonsil & cyst removed
8/9/11 - Corrected diagnosis of MEC @ BOT
8/17/11 - TORS to remove lesion
9/2/11 - Bilateral neck dissection. All nodes clear! Done!
12/13/11 - PET/CT scan clear
Joined: Jul 2011
Posts: 42
WarrenW Offline OP
Contributing Member (25+ posts)
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Joined: Jul 2011
Posts: 42
FYI - In case someone runs into this thread in a search. They intentionally close it up so that it protrudes. This is so that when the scar tissue forms, it lies flat. If they close it flat, it will heal indented. Thought that was interesting (and good!)


Age 35
non-smoker, non-drinker
7/1/11 - Diagnosed with SCC @ BOT, stage 1, lingual tonsil & cyst removed
8/9/11 - Corrected diagnosis of MEC @ BOT
8/17/11 - TORS to remove lesion
9/2/11 - Bilateral neck dissection. All nodes clear! Done!
12/13/11 - PET/CT scan clear
Joined: Jan 2011
Posts: 571
"Above & Beyond" Member (500+ posts)
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Joined: Jan 2011
Posts: 571
yep, yep, yep! That is true...and it works beautifully. I know from experience...not ND experience...but sumpin else.


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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