| | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Very interesting. I just figured it was since I sit at a terminal hours on end, that was the primary cause. I do find when I make a conscious effort to stretch and take more breaks the pain is noticeably lessened.
Is an orthopedist specializing in shoulder the go to person or is it more important to find someone who treats post tx HNC and other radiation blasted survivors?
I've been considering hitting the gym but do not want to do that until I talk with PT as it would be just as easy to make thing worse than any better.
Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Jan 2015 Posts: 15 Member | | OP Member
Joined: Jan 2015 Posts: 15 | Hey everyone just a quick update. Back on January 22nd I was weighing 132 lbs, I got a gym membership and have been going a measly 2-3 days a week. I've been still eating around 3 meals a day and I added in a protein shake about 5 days a week. I jumped from 132 lbs and today I weighed in at 145 lbs. I'm so glad to be able to put on this weight as it was very much well needed!
Male, 23 year old�Dx 6/17/14 with SCC R Lateral tongue
CT scan clear lymph nodes 6/20/14
HPV-, form-smoker, casual drinker
Right Hemiglossectomy Surgery 6/24/14
(Not reccurrence but went to NCCC instead)
Right neck diss., trach, radial free flap, right tongue diss. surg 8/11/14
PT1N2B..3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) and Cisplatin (2x) begun
10-21-14 peg in. 11-4-14 IMRT rx comp. 1-9-15 peg out
3-27-15 Recurrent tumor in lymph node, Left neck diss.
10-29-15 passed away
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | [quote=donfoo]Very interesting. I just figured it was since I sit at a terminal hours on end, that was the primary cause. I do find when I make a conscious effort to stretch and take more breaks the pain is noticeably lessened.
Is an orthopedist specializing in shoulder the go to person or is it more important to find someone who treats post tx HNC and other radiation blasted survivors?
I've been considering hitting the gym but do not want to do that until I talk with PT as it would be just as easy to make thing worse than any better.
Don [/quote]
Don, I never answered your question. I went to an orthopod, two actually, and they both did surgery, because that is what they do. I think that caused more problems. I also have had at least a hundred PT sessions and never could maintain the gains achieved. As soon as I got into a cold, air conditioned room, everything tightened up. My most recent successes were using what the PT's did but rapidly accelerating the additional weight. Then I go to an ART provider once a month for a tune up. With about 100 weeks in a row at the gym, a big portion of my back filled in where a lot of atrophy was. It just inflated like a tire about 4-6 weeks ago. The ART dude was blown away and the therapist that works on me was shocked as well. They have been on this journey with me for over 2 years and the office for 5.
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
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | BrandonK427, that is great news! You seem to be way ahead of schedule. God job.
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
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | So PT is the most likely specialist to get some release of the tension and cramping. What does ART stand for? My searching only found art as in paint brush therapy. lol
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | PT is for lost range of motion mostly, designed to free up soft tissue.
Active Release Technique
If you aren't doing anything October 17, come to the Houston walk. There will be a presentation by my ART provider.
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
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Ed,
I do have limiting motion that shouts out in the shoulder toward the end of normal range in the upward direction. This is still well above horizontal so not all that confining but does make putting on a jacket a bit ouchie at times. When lying in bed on that shoulder does cause pain at times as well, enough so I wake and have to roll over.
I see ART is practiced by chiropractic folks. Do you know if this is generally covered by insurance under chiropractic services?
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | It's covered by my insurance but limited to 20 treatments a year. The beauty of ART is the mostly work on muscles and nerves.
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
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Ed,
Who generally does referral to ART?
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | You do, unless your insurance requires chiropractic referrals.
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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