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#160561 01-20-2013 12:39 PM
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jeffy Offline OP
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Hi everyone,

I don't post here often but I was wondering if anyone is going through anything like what i've experienced for several years now.

I was treated for L tonsilar ssc with L cervical lymphnode involvement...stage 3...in 2005.

The radiation was bilateral, but of course it was full throttle on the left side. As result, I have a great deal of muscle spasms on the left side of my neck and shoulder...still. Dizzines, oral spasms.

Is anyone experiencing anything like this? It's been 7 to 8 years now and it can still send me into the fetal position at times.

Thanks for any help...and am sending out prayers to all who are undergoing treatment, survived it and trying to live in the post treatment world....caregivers included.

Jeff

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Hi Jeff,

Welcome to OCF. So sorry to hear about such painful and long term post TX pain. You did not include much about what the doctors say about this situation, what they have done to help, what they are doing, or what is planned different to improve your situation. Get to a doctor ASAP if you are suffering this alone.

I'm new to this all so I can not give you any specific options for chronic pain management protocols but many drugs are around to ease the pain and various therapies to reduce the spasms.

good luck
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
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"OCF Kiwi Down Under"
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HI Jeff, Congratulations on being a long term survivor.
My advice would be to get this checked out by your Dr. Especially the dizzyness.
A long term effect of the radiation ( down the track) is it can cause problems with the carotid artery. You may need an ultrasound of this area to exclude an occlusion.
Again, congrats on your survivorhood,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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You may want someone to check the left side of your neck for a subclavian steal. It's fairly common (the older men get) for the carotid artery on the left side to narrow causing a shortage of blood which the body makes up by "stealing" blood from surrounding vessels. The result can cause dizziness. There are of course many other causes of dizziness but I would advise you to try and determine what id making you dizzy.

My radiation was also concentrated on the left side and I occassionally (a few times a week) experience a tightening of my left neck muscles and I also recently started experiencing some dizziness and I was found to have this steal crap.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Radiation can have acute and late occurring problems with muscles and nerves, causing head and neck muscle spasms and pain. I heard of Botulinum toxin a injections is sometimes given to treat this, specifically of the sternocleidomadtoid muscle, and heard of Botox injections too.


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






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I was going to say the same thing about the artery... Also he spasms - maybe regular massage often spasms are caused by poor blood circulation in the area?! Congrats on your survivorship.


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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Sort of on the same subject. I do not see much in the way of using water therapy to abate various symptoms. I see often massage being utilized for things like neck pain and poor circulation. Spas and hot tubs often used for similar purposes yet rarely discussed.


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: Mar 2008
Posts: 3,082
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Jeff

I had/have similar problems but big improvement after exercises. In my case, the carotid is wide open. Best guess by my docs is radiation fibrosis. For me, Yoga and shoulder exercises have really helped. It could not hurt to get a prescription for physical therapy for your neck. The therapist helped me develop some exercises. The trainers at my gym helped with strengthing exercises. I found them both helpful . As the muscles slowly strengthened it did get better
Real massages (not woo woo reiki - look ma no hands) do feel good but get expensive. Again, some therapists can do myofascial release to break thru the adhesions.
Charm

Last edited by Charm2017; 01-21-2013 06:42 PM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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