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#185639 10-02-2014 12:11 PM
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I've been reading your site for a while and finally decided to dip my toe in the pond and say hello.

This past year has been a whirlwind, roller coaster ride, but I am exceedingly thankful for finding this site, for having a wonderful rah rah team, and for having a great team of doctors. Things are going very well except for the weakness and pain I have in my right arm and shoulder. I've done the PT, several nerve blocks, and continued daily exercises but nothing seems to help. My ENT surgeon is fabulous at what he does, but has no sympathy for my arm/shoulder complaint which originates below my right collarbone and extends down to about my elbow. I've read this can be a common occurrence after a radical neck. Does it last forever or does it eventually get better? After a nine month hiatus, I've gone back to one of my great passions, which is teaching dance, but I hate that I can't get my arm up. Any suggestions?

Paula, your friendly Gardening Girl


Paula
59yo former smoker
SCC floor of mouth and mandible
Stage 2, T2N0M0, G2
DX 09.20.13
TX: 01.21.14 Surgical removal floor of mouth, hemiglossectomy,removal teeth #21-29, alveolar ridge, midline and right marginal mandibulectomy. Temp trach. Radical Neck Dissection.
No Chem or Rad
07.18.14 No sign of disease <yay!>
09.17.14 Temporary Fixed Prosthesis (Yay, some more!>
Frustration: pain and limited movement r arm/shoulder
Joy: I am so thankful to be alive and to enjoy life.
Gardening Girl #185640 10-02-2014 01:10 PM
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Welcome to OCF, Paula!

Thru PT you may get more range of motion. Unfortunately for most patients (myself included) I have limited mobility which is permanent. With so many after effects that can occur and do, to me its just one of the minor annoyances that remind me of my journey.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Gardening Girl #185641 10-02-2014 02:29 PM
Joined: Aug 2007
Posts: 1,301
"OCF Down Under"
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Hi Paula,
We had similar surgery and I also could not lift my arm up on the side of the mandibulectomy.
I did PT for quite a while which may have helped but in the end the therapist told me he could not do any more and it would come good in it's own time.
Sure enough one day I realised while showering that I could raise my arm to wash my hair shocked
I have a theory and may have even been told that during the very long surgery my arm was placed up and behind my head.
Best of luck with your ongoing recovery.
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Gardening Girl #185648 10-03-2014 02:19 AM
Joined: Dec 2003
Posts: 2,606
Likes: 2
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Hi Paula and welcome!

Do you know if there were any issues with the accessory nerve during your surgery? That is what innervates the muscle that begins the process of lifting the arm. If it isn't damaged, there's a high likelihood it will come back but the longer you stop trying, the less likely.

There are some other therapies that may help if you are interested. I have been able to revive many atrophied muscles but it is constant effort.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Gardening Girl #185653 10-03-2014 10:33 AM
Joined: Oct 2014
Posts: 5
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Joined: Oct 2014
Posts: 5
Thanks for the responses. I had an EMG scheduled for Monday, the 6th, but cancelled it because several PT friends said there wasn't any point except for the information it would give us. As in, it would not change any treatment plans, which is simply continued PT exercise program at home.

Uptown, I would be interested in hearing about any other therapies that may be helpful. Like you, there's no quit here either.

One other question, in reading so many of the forum threads, recurrence of OC seems to happen quite often. Is that really the case or is it that once people have gotten past a certain stage in their recovery they simply drop out, leaving information skewed in that direction? If recurrence IS the case, what is the best advice you can give? I have no intention of living in a state of paranoia, but forewarned is forearmed, right? It's all a new perspective.





Paula
59yo former smoker
SCC floor of mouth and mandible
Stage 2, T2N0M0, G2
DX 09.20.13
TX: 01.21.14 Surgical removal floor of mouth, hemiglossectomy,removal teeth #21-29, alveolar ridge, midline and right marginal mandibulectomy. Temp trach. Radical Neck Dissection.
No Chem or Rad
07.18.14 No sign of disease <yay!>
09.17.14 Temporary Fixed Prosthesis (Yay, some more!>
Frustration: pain and limited movement r arm/shoulder
Joy: I am so thankful to be alive and to enjoy life.
Gardening Girl #185654 10-03-2014 12:15 PM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Recurrences do not happen as frequently as you may think. Its way less than 50%, maybe as low as 15 or 20% of OC patients will have a recurrence. Sorry, Im not one who is big on numbers as I was fortunate enough to beat this with the odds stacked against me.

The best advice I can give anyone is to not let cancer steal away their time by constant worrying the other shoe will drop and wondering "what if". Worrying has never changed a test result, its only made the patient or caregiver feel unneeded anxiety. Make the most of every single day and try your best to make memories with your friends and family. By focusing on the positives in life it will help limit the time spent with unproductive worrying. A recurrence is all of our biggest fear but somehow we all must learn to overcome this and move past it. Hard, huh? Sure is!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Gardening Girl #185655 10-03-2014 02:04 PM
Joined: Oct 2014
Posts: 5
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Joined: Oct 2014
Posts: 5
Thank you, Christine. I like the way you think!


Paula
59yo former smoker
SCC floor of mouth and mandible
Stage 2, T2N0M0, G2
DX 09.20.13
TX: 01.21.14 Surgical removal floor of mouth, hemiglossectomy,removal teeth #21-29, alveolar ridge, midline and right marginal mandibulectomy. Temp trach. Radical Neck Dissection.
No Chem or Rad
07.18.14 No sign of disease <yay!>
09.17.14 Temporary Fixed Prosthesis (Yay, some more!>
Frustration: pain and limited movement r arm/shoulder
Joy: I am so thankful to be alive and to enjoy life.
Gardening Girl #185659 10-03-2014 03:19 PM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Paula, the most important thing is blood flow. If the nerve isn't damaged, as in severed, it will all be fine. It can take a while but you have to keep working it to keep blood flowing and the mechanics intact.

I have a sequence of stretches and I use s chirporactor trained in nerve and muscle issues. His office used ART, Active Release Technique. It is part accupressure, part trigger point, part stretching and other techniques intended to improve circulation, joint alignment while reducing or eliminating pain. The doctor I use is about the only one left I trust anywhere in the country.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023

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