| Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Drs tend to blow it off - a lot of the time it's the - well you're cured and alive - thought. So live with it.
????!!!!
Muscles that have been radiated are damaged. Now muscles have a memory and that memory has been damaged. Radiation also causes reduced blood flow to that area which in turn allows the muscles to atrophy and die.
Can you revive them? To a degree. Eventually over time the damaged cells to generate but this could take years. (one of our members who had facial paralysis with therapy - years later has regained some movement. This is also the same concept with nerves though they take longer.
Pain could essentially be the muscles dying due to lack of O2/blood flow. My advice for what it's worth is acupuncture maybe once or twice weekly to help restore blood flow to the area, plus massage, this too helps warm and soften the muscle and improve blood flow. Also physio this helps stretch and warm the muscles as well plus it has the benefit strengthening. (this also works for nerves too)
Unfortunately it's a long haul. I've regained full function to my arm and neck and maintain it by stretching daily. In the early stages I did acupuncture and physio. And the physio can be passive, simply using your good arm to help the bad improve circulation and range of motion.
I had a left neck dissection and bilateral radiation.
Hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | As far as myself, the doctors don't blow me off, but it's more a matter of priority, and where I can fit such in my schedule with all my other appointments, tests, treatments, and surgeries. I'm not sure about all nerves being able to regenerate once removed. Time will tell, although it's 4 years already, 5 neck dissections and 5 radiation treatments later, total 192Gy, actually more since IORT is 3x the actual IMRT dosage, but with time it's worse than better. Acupuncture, although I did it before successfully for my back, I'm reluctant to do it for my neck/shoulder for several reasons, and very cautious with any type treatment, although I learned by demonstration how light lymphatic lymph drainage is, and not like shiatsu or deep massage I was thinking, so that's on the table too. Forget about chiropractor. I had prior experience with 4 pre-cancer, and not manipulating my neck with the surgical clips, and sutures for the common carotid artery stumps. Today I see the nephrologist, Friday I start PT for the 3rd time, and I can't drive, so that's a factor too, whew!
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | Whew is right, Paul. By engaging and participating, you have proved the docs are out there, willing to do everything. You are the standard of care and patient advocacy as complementary activties.
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 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | YIKES.... If a nerve has been removed... it will not grow back. If it has been cut it will regain some sensation.
Lymphatic massage is good but only after you've gotten a NED over a reasonable period of time.
I would eventually give if not acupuncture a try... maybe acupressure? I'm not sure how long term it is but I've actually seen a hysterectomy performed without anaesthesia only acupuncture. But as you know it really needs to be someone who knows their crap... hugs and blessings.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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