| | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | OP  "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | Hi Martin is in constant pain on the side of the neck along the scar and in his shoulder. He has accepted this might the case forever now, but is trying all of the suggestions from the pain management team. So he tried botox. It had the reverse effect to start with and now it's the same as ever. The botox made his muscle cramp up and twitch and ache more. Has anyone else tried and seen a positive result? Pain team reckon it might work second time round.
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Its so nice to see you posting again!
I asked my ENT a few years ago about botox. He told me absolutely positively NO. He explained that botox paralyzes the muscle which in my situation would not be a good thing.
I havent seen anyone with good results on the forum. Hope it works out for him.
Good luck!
ChristineSCC 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  | | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Agreed... I have seen botox used to rid a person of pain but usually this is an extreme circumstance - a friend's nephew has muscular dystrophy and is very twisted. The botox alleviates his pain, but has minimal effect on his health and movement ability as he is already so disabled. I would be concerned about paralyzing a muscle you need to use... (neck and shoulder) and think that by strengthening both he may be able to minimize his pain. best of luck
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: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | OP "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | Thanks for the feedback. Acupuncture worked for the movementfor a while but now it hasrun out.Martin is on awaiting list to see thatladyagain. Sheisvery much indemand. In the meantime a lady who comes to workto massage ouroffice worker sore backs has said shewould tryandhelpand will a, so try reflexology as well.
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | 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 | Try someone who specializes in active release technique. I see it is something across the pond as well. It is more a cross between eastern and western approaches to total body alignment for optimal functionality. Chiropractic but more focused on muscles. I would say it is accupressure. I too would stay away from Botox especially if there are any neuro or muscular issues anywhere in the body. The main side effect is difficulty swallowing so if you have that it sure doesn't make sense you would want to make it worse.
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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