#72710 04-09-2008 09:31 AM | Joined: Mar 2008 Posts: 3 Member | OP Member Joined: Mar 2008 Posts: 3 | after a few radiation treatments i am having mussle spasms in my neck, is there something that i can do to relieve the spasms ? | | | | Joined: Sep 2007 Posts: 98 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Sep 2007 Posts: 98 | Hi Skifan,
Could you give us more history such as type of cancer, any surgeries, treatment plan such as how much radiation or any chemo? Everything you can tell us. You can get an idea from the signatures of the people posting on this board. You can add your own signature info by clicking on My Stuff at the top and then clicking My Profile. At the bottom you can create your own signature with info.
Tom SCC T4N1M0 left side tongue & 1 node Dx 05/21/07 42 yrs old 40 Tx IMRT @ 70 Gy started 06/25/07 Cysplatin & 5fu 1st & 4th wks treatment ended 08/23/07
| | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | Ditto what Tom said. Also, have you had a neck dissection? All of these things factor in. Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I never had any spasms from the chemo or the rad and I didn't have a ND either.
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.
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | It took 2 years before the fibrosis in my neck (from RT) got to the point where I was having fairly consistent neck spasms. I tried PT with limited success and now they just give me scripts for Valium. I would ask the techs about your neck position and the spasms - something is not right. Maybe they got the headrest backwards - they did that to me one time. In any case you shouldn't be having spasms this early in the game.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Mar 2008 Posts: 3 Member | OP Member Joined: Mar 2008 Posts: 3 | thanks to all who gave their time in responding. I had my left side parotid glan removed on feb. 14. i started radiation last thursday at a rate of 5 times per week. on my 3rd treatment i experienced spasms on the area being treated 6 hours after treatment. no chemo. skifan
acinic cell adenocarsinoma , removeral of the poradid gland, radiation only (35 treatments @ 5 min run time). age 54/m/fla
| | | | Joined: Feb 2008 Posts: 341 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Feb 2008 Posts: 341 | I just asked Dan this question and he said he gets them under his chin after yawning... But they must not be too bad because he's not mentioned them before.
Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO) Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer, TX IMRT 39x, cisplatin 7x (completed 5/1/08), PEG (4/22 - 7/9), No port. Currently in remission!
| | | | 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 | What a great topic. I have spasms that I now know are called fasciculations. The muscles on the left side of my neck, the big ones in the back of the head, the left shoulder all twitch as many as hundreds of times per minute. After going through PT that only made it 100 times worse, I found a neurologist that has conducted numerous studies on post-radiation issues and many people 10 years out from radiation develop a syndrome that he has discovered. I was just lucky because it happened so soon, I guess. I had an EMG and then another test where they stick a needle into the neck and all the spasm areas, even the tongue from under the chin with a sonagram type noise when the muscle fires. I have tried the standard drugs, Neurontin, Gabapentin, etc., but nothing has worked and likely will work.
I took Gary's advice long ago and a valium/vicodin at bed time keeps my neck from flopping off the pillow and allows me to sleep without the dog and wife complaining about me not laying still!
A good night's sleep keeps the spasms down most of the day so I do not medicate until after work.
I still get massive spasms that create a fist sized ball in my neck sometimes but they massage out and only last for seconds.
I would be glad to offer the study if anyone is interested.
Ed
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | David, the best is yet to come. The RT damage to the traps doesn't come into play for as long as 2 years post Tx. Radiation truly is the gift that keeps on giving. The spasms I have been getting are progressively getting worse as time goes on.
Michelle, I had pain on yawning early on in Tx and immediately post Tx as well. Most of that is from the radiation burns and mucositus. it could hurt like hell at times.
Ed, I use codeine instead because Vicodin has acetaminophen in it which is bad for the liver. PT didn't help me either but they did come up with suggestions for pillow heights depending on how you sleep which were useful (lower for stomach sleepers and higher for side sleepers).
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | 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 | Thanks Gary! I have had such remarkable results from the Hep C stuff and all liver functions are normal since 2003. I still limit the acetaminophen to 2 grains per day. My father is a pharmacist and we have been having lengthy discussions about codeine versus vicodin/loritab and he says codeine may cause more constipatin when taken longer term and oxycodone is considerably stronger. I have even gone back to the Fentanyl patches although only at 25 mcg/hr. The pain gets really tough sometimes.
The pillow thing isn't an issue because I can only last about 45 seconds on the side because of the shoulder surgeries. I use the pillows from Brookstone that really work well plus the wierd wheat or something like that pillow that conforms well.
I'm sorry to hear yours is progressivley worse but I know exactly what you mean. I have gone to a c-collar for all airplane trips and extended car trips as well. I just know something has to work.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Gary,
You're trying to cheer me up during the throws of tax season, Right??
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.
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Ed, maybe you're a candidate for botox injections.
500/5 Vicodin is 500mg of Tylenol and 5 mg of oxycodone (but you knew that).
I disagree with him in that all narcotics, synthetic or otherwise can cause constipation.
Valium works for me alone most of the time - I don't use the codeine unless it is particularly gnarly.
My liver function has progressively improved as well, but my personal protocol is not to ingest anything that could further exacerbate the damage.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Gary and Ed, How do you guys get your doctors to give your medication to help with the spasms? I have been complaining about them for over a year now and all I ever hear is "go to PT". PT might loosen up my neck but it doesn't stop the spasms. It does make it tough to sleep and I have a difficult time sitting and watching my girls play their sports because of the position of my neck. I end up having to stand during the games. I would love to have some medication that could relieve it.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I am fortunate that my doctors understand fibrosis caused by radiation damage. The last time I saw my MO he asked me if I needed any scripts but my GP has been pretty good about renewing my Valium and Codeine scripts. I usually just email her when I'm getting low and they mail it to the house (exception is the codeine -I have to pick that up at the hospital pharmacy due to federal regulations). Like Ed, I did try PT and attempted to train different muscle groups to take up the slack but it was unsuccessful. I believe that long ago I sent them some links about fibrosis and muscle damage from RT. Last time in they offered me Flexeril but I declined it as it is stronger than Valium and Valium works just fine. I can function just fine on Valium but Flexeril made me groggy and I would also get a hangover from it. I may attempt to extend my SSDI when it expires in October.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2006 Posts: 199 | Gary - have you tried Skelaxin? I was just talking with my sis, who is a PT, about the different muscle relaxants and we both agreed that Skelaxin seemed to be the one that works the best with the least amount of side effects. Flexaril makes me feel horrible... groggy, dry mouth, etc..
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I'm perfectly content with Valium but I will ask about the Skelaxin.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | 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 | I did pursue the botox injections but after the EMG and this other thing using about a 3 or 4 inch fine needle into my neck, arm, shoulder and believe it or not through the bottom of my chin into my tongue, they determined it was more motor related and botox would not help. They mentioned Gabapentin and Skelaxin but after Neurontin, Flexiril and about 5 others I ended up believing the Valium does the best. I did go back to Fentynil patches but only 25 mcg/hr and I use 10/325 Vicodin and 5 mg of valium at night. This seems to give me good sleep and I function fine at work although I would like to use nothing but that doesn't seem to be in the cards, unfortunately.
Minnie, you should just mention to your doctor that you know other people that have had significant relief with the Valium/Vicodin combination just before bedtime and he should do it. My spasms started out with the jaw literally locking with a big lump like a fist where it locks. Now I just get a constant firing like twitches that gets ooos and ahhhhs from all the doctors when I just ask them to lay their hand on my neck. It is definitely fibrosis from the radiation. I have now had neurological tests done and in the end they attribute it to radiation but have no known treatment. I opted for a good night's sleep. If I don't get that, the twitches are a series of many muscles many times per second. My wife says it looks like Parkinson's when I am sitting at the computer. The term now I've learned is "fasciculation". That is just so much more sexy than muscle twitch! It's nothing close to the infamous "Sabrina's butt dance" if you remember that one (Lhermitte's).
I am so sorry I forgot to mention the Kansas Jayhawks won the National basketball Championship on my 52nd birthday, April 7. Happy belated birthday to me, happy belated birthday to me...happy belated birthday to me-ee...happy belated birthday to me!
Thinking of all of you but especially Gary and Minnie right now!
Ed
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: Mar 2008 Posts: 6 Member | Member Joined: Mar 2008 Posts: 6 | Greeting's Everyone, As Ed mentioned in the above post, I'm in my third rad TX , 1 Cisplatin/Decadron/malatron?/and came out of the local K-mart today after shopping for roses and began to get the pins and needles all over my body , then the rt neck/shoulder spasm started . Ricky ____________________________________________ DX: 2/7/08 SCC rt tonsil Rt: neck disection 3(L) removed 30 rads@200 IMRT/3Cisplatin ___________________________________________
| | | | Joined: Jan 2004 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2004 Posts: 64 | I found this thread when I did a search for botox injections. I just read an article from the otolaryngology dept of the university of iowa about the use of botox into the SCM muscle to alleviate spasms due to late effects of radiation. I thought I had struck gold, but now I'm not so sure. I have been having progressive pain in my neck for a while now, but i'm not sure if they are spasms. It is very tender, almost like trigger points, but my neck does not twitch. my trapezius at the base of my skull is super tender as well as where the neck and shoulder meet. This is all on the opposite side of my disection, although i was radiated there. Ive been to neurologist and had an mri done of my neck. the mri states i have some mild bulging in c4 through c6, some neural encroachment etc. everything is mild and the dr suggested elevil, which i found out is an antidepressant used for nerve pain. i've asked my mo for pain meds throughout the last several months, and he basically refused. these are the docs who only prescribed me liquid vicodin during the worst part of treatment. I guess i didnt complain enough. well i'm certainly making up for it now, but no luck on the meds. i take .25mg xanax from time to time and raid my medicine cabinet for old pain meds(i've been taking a 1/2 a darvocet every other day, but just took my last one last night). i contacted a pain management center at a local hospital and asked about botox injections and the woman had no idea what i was talking about . does anyone know where i can inquire about this? also, Gary, do you take the valium and vicodin at the same time and can you function on that? Also, my left throat, tongue, sinus and ear have continued to hurt(just a dull ache/pressure), pretty constant now. they assure me it isnt a recurrence. could that be a muscle spasm as well? i've read about glossopharyngeal and trigeminal neuralgia however my pain in not sharp and severe, so maybe atypical? Lastly(i promise), i read a study on a drug combination of pentoxifylline and vitamin e for radiation induced fibrosis. anyone ever hear of it? sorry so long, i seem to be my own advocate these days. thanks. Kelley
SCC tonsil(left) with contralateral mets. Modified right neck disection August, 2002. 33 rads(62 gy)both sides of neck and 3 cycles cisplatin completed October 25, 2002. 34 yo at time of diagnosis
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I take a .25 xanax twice a day and usually split a percocet in half for 2 times. As for darvocet, to me it's about as good as aspirin. just doesn't kill pain at all. The Drs are supposed to control your pain with meds if necessary.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Kelley, I mainly use 10mg (blue) Valiums for the spasms and Codeine, occasionally, if the pain is too great. I don't take more than 30 codiene a year and less then 200 Valium in a year. I am prescibed to take 1 Valium a day for sleep, but I don't always.
I can't take Vicodin because of my liver issues.
They did offer Botox as an alternative but I am saving that option if it gets more unmanageable.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Jan 2004 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2004 Posts: 64 | Gary, Who would be the most likely doctor that would do the injections? I just spoke with the pain management people and they only do steroid injections. Jim, I asked my medical oncologist for ultracet last visit which I believe is the most mild narcotic and he refused. He said if I had cancer...but I dont. I feel I am being undertreated. I'm not narcotic seeking, I just want to be able to function. BTW, glad to see you up and posting. I dont post often, but have been following your progress. You've got an amazing attitude and are truly an inspiration!
SCC tonsil(left) with contralateral mets. Modified right neck disection August, 2002. 33 rads(62 gy)both sides of neck and 3 cycles cisplatin completed October 25, 2002. 34 yo at time of diagnosis
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I keep looking for that LITE at the end of the tunnel but it keeps backing further away. LOL Gonna have to get one of my guns and stop it. Got a call from the director of the Cancer center today and he wants another PSA test real soon. Geez, they hardly let one heal and go after another.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
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