Muscle Spasms in Neck: Can anyone relate?

luv4lacrosse

NECK ISSUES
Hi Kim, outside of the Neck issues Mark is having, it sounds like he is doing remarkably well. I do not have spasms, but my neck and shoulders are extremely sore when I wake up. I do not know if it is Lymphatic Fluid backing up,the way I sleep or something else. I can usually work the stiffness out with a long hot shower and some stretching.

I only had a Modified Neck Dissection, I still have my muscle, but the surgeon had to scrape allot on the musle to get the cancer growth(s) away.

I am guessing this is a nerve issue either from surgery, or might he have a pinched nerve in his Cervical Spine that could be relieved with an adjustment or some Ultrasound Therapy?

Mike

Skiffin16

KristynRuth86 said:

I can relate
I know what he means, I have the same pains in my neck and when I tilt my head all the way forward (like looking down) I get a numbness all the way down my spine. I've asked the oncologist and though there is no remedy he says he does expect it to get better. He says it is due to the radiation on the spine, and that it is neurological (sp?). I hope he gets to feeling better!

L'Hermettes ~ Kristyn


I would venture to say that your oncologist is wrong about not to expect it to get better....

What you describe is not what Kim was talking about. It's called L'Hermettes Syndrome or Symptom..very common among us that have had the H&N radiation.

It usually come on a few months after rads, lasting around a year. Then usually going nearly if not completely away.

You tilt your head forward and get this tingling almost electric shock feeling. It can go through your arms and fingers, down your spine through each leg, even reaching your toes....

Don't give up, more than likely it'll go away on its own.

Best,
John

vsudd

I can relate
Hi Kim, My husband also had a radical neck dissection in May of 2011. He suffers from muscle spasms, especially when cold air hits his neck. You can see the muscle spasm. They took out his lymph nodes and the muscle in his neck and replaced it with his pectoral muscle, He also has pain in shoulder and loss of his right arm. This got worse about 3 months after surgery . His surgeon really has been no help. They don't tell him if this is normal or not. We went to a new surgeon and he said he is no different than any dissection patient. So I have been on different web site, message boards, etc. to try and find some advice. I looked up pain after neck dissection and found studies that show acupuncture helps neck dissection patients. He has been going for about 5 weeks and I do see a gradual improvement. It may help your husband. Good luck. Hope this helps. Valerie

staceya

vsudd said:

I can relate
Hi Kim, My husband also had a radical neck dissection in May of 2011. He suffers from muscle spasms, especially when cold air hits his neck. You can see the muscle spasm. They took out his lymph nodes and the muscle in his neck and replaced it with his pectoral muscle, He also has pain in shoulder and loss of his right arm. This got worse about 3 months after surgery . His surgeon really has been no help. They don't tell him if this is normal or not. We went to a new surgeon and he said he is no different than any dissection patient. So I have been on different web site, message boards, etc. to try and find some advice. I looked up pain after neck dissection and found studies that show acupuncture helps neck dissection patients. He has been going for about 5 weeks and I do see a gradual improvement. It may help your husband. Good luck. Hope this helps. Valerie

Medical Massage?
Not sure if this was already mentioned..can't find my glasses so I couldn't read the posts too well
I also have neck spasms, they come on suddenly and I can;t help but make that awful noise, like when you step on the cat.
Maybe it was my co-workers (who have to listen to me) who suggested massage...our insurance covers it, and it has made a WORLD of difference, neck spasms maybe every 6 weeks, instead of daily and the right side of my mouth is now normal, it was turning down instead of up when I smiled and now it is how it used to be. Swallowing improved significantly after massage. I tried working on it myself, but she can move the tissue around in ways that I cannot...
If you can, give it a try, make sure it is medical massage, is a bit different, doesn't really feel too good during the treatment, but worth it for me.
Stacey

tonyanddenise

Kim,
Tony's pain has been
Kim,
Tony's pain has been severe since his radical neck dissection last June. He has tried several pain meds with little to no relief. The doctors have told him that it is part of the healing process but I found a study from the University of Iowa that shows a correlation between severe pain and recurrence. Many doctors dismiss the pain. Make sure that you are a vocal advocate for frequent scans if the pain continues. Tony's cancer has returned to another lymph node on the left side again. This is just 8 months post treatment. Stay on top of it!
Denise (Tony's wife)

sweetblood22

tonyanddenise said:

Kim,
Tony's pain has been
Kim,
Tony's pain has been severe since his radical neck dissection last June. He has tried several pain meds with little to no relief. The doctors have told him that it is part of the healing process but I found a study from the University of Iowa that shows a correlation between severe pain and recurrence. Many doctors dismiss the pain. Make sure that you are a vocal advocate for frequent scans if the pain continues. Tony's cancer has returned to another lymph node on the left side again. This is just 8 months post treatment. Stay on top of it!
Denise (Tony's wife)

Well I sure as heck don't
Well I sure as heck don't want to read those two things. First and formost, about Tony's recurrence. So sorry to read this. Second - the pain in my neck has been constant.

wifeforlife

sweetblood22 said:

Well I sure as heck don't
Well I sure as heck don't want to read those two things. First and formost, about Tony's recurrence. So sorry to read this. Second - the pain in my neck has been constant.

cramps..
My husband still gets what can only be called cramps in the neck... much like you would get in your legs... he doesn't get L'Hermettes Syndrome much anymore... and funny thing about that is when the L'Hermettes started it frightened him... now he misses it some... go figure!..
Wife

luv4lacrosse

NECK PAIN AND STIFFNESS
Hi Kim, other than the neck pain, it sounds like Mark is well on his way to returning to normaal. I did not have the radical neck dissection, but I too have allot of stiffness in my neck and shoulders and the area around where i had my surgery is almost rock hard. When I am at the gym, I have been doing some shrugs and some targeted shoulder excercises that seem to add some strength back as well as flexibility. I also swaer by the dry heat sauna at my gym as I sit in there after a workout and do allot of targeted stretching of my neck, jaw and shoulders which if done regualarly for me, it seems to loosen everything up.

I do not have too many spasms, but I do seem to have two spots, one on my neck and one on my chin where nerves are constantly contracting.

Hope this helps.

Best!!

Mike

Pam M

staceya said:

Medical Massage?
Not sure if this was already mentioned..can't find my glasses so I couldn't read the posts too well
I also have neck spasms, they come on suddenly and I can;t help but make that awful noise, like when you step on the cat.
Maybe it was my co-workers (who have to listen to me) who suggested massage...our insurance covers it, and it has made a WORLD of difference, neck spasms maybe every 6 weeks, instead of daily and the right side of my mouth is now normal, it was turning down instead of up when I smiled and now it is how it used to be. Swallowing improved significantly after massage. I tried working on it myself, but she can move the tissue around in ways that I cannot...
If you can, give it a try, make sure it is medical massage, is a bit different, doesn't really feel too good during the treatment, but worth it for me.
Stacey

Been a Little While
Nice pic

feedmindanaochildren

Kent Cass said:

Neck pain
Kim
Only C&R for me, and I still experience neck spasms on a daily basis- triggered by activity. L'hermitte's Sign is different, and experience that less, now, as I can ID what triggers it. I figure it's just another, albeit acceptable, side-effect. Hope it gets better for Mark.

kcass

Post C&R neck muscle spasms
I also had C&R in 2004-2005 and am now experiencing neck muscle spasms. My wife and I were in the Philippines for two years and I was able to get a two hour massage on a nightly basis from her sister and I found I had very very few episodes of muscle spasms but since we have come back to the US and I don't get those nightly massages I have been getting spasms about ten or fifteen times a day. They don't last long but man are they painful and distort my neck (it looks like I am clenching my teeth when it happens).
Tom
P.S. I like your composite pic.

sweetblood22

Mine is actually getting worse.
Now I am having wicked pain and tightness/cramping on the left side, where the dissection was, but within the last couple weeks, I've gotten them on my right side as well. The intensity of the pain is worse too.

Hal61

Super-Glued Neck
Hi Kimba, yes, my neck on the partial dissection side has gone through the list already given. I have lately been getting less actual pain and stinging in my ear lobe, but the tightness, and infrequent spasms are with me. When I yawn, it cramps on the effected side.
I was just prescribed a new med for it by my new medical onc. I don't know if it will do anything because I just started taking it, and will comment on it if I get a result. It's called "gabapentin." I'll paste a brief statement on it's use taken from a medical info site:

"Gabapentin capsules, tablets, and oral solution are used to help control certain types of seizures in people who have epilepsy. Gabapentin capsules, tablets, and oral solution are also used to relieve the pain of postherpetic neuralgia (PHN; the burning, stabbing pain or aches that may last for months or years after an attack of shingles). Gabapentin extended-release tablets (Horizant) are used to treat restless legs syndrome (RLS; a condition that causes discomfort in the legs and a strong urge to move the legs, especially at night and when sitting or lying down). Gabapentin is in a class of medications called anticonvulsants. Gabapentin treats seizures by decreasing abnormal excitement in the brain. Gabapentin relieves the pain of PHN by changing the way the body senses pain. It is not known exactly how gabapentin works to treat restless legs syndrome."

It also has a list of potential side effects that cover all the legal bases, so they range from drowsiness, to suicidal. Hey, but a lot of drugs say that. Like I said, I'll post my opinion on its effects once I use it a bit.

best to you both, Hal

Greend

Common
I spent thousands of dollars getting a diagnosis and it was in the superthread all along :>( My Dr. says the neck spasams result from irriation/damage to the trigeminal nerve in the jaw from the radiation. My diagnosis is Dysphagia which is in the thread. Only relief I get is from heat and sometimes if I lay on my side. My neck and right shoulder are in a constant "twitch" and they hurt pretty much all the time.

Kimba1505

Greend said:

Common
I spent thousands of dollars getting a diagnosis and it was in the superthread all along :>( My Dr. says the neck spasams result from irriation/damage to the trigeminal nerve in the jaw from the radiation. My diagnosis is Dysphagia which is in the thread. Only relief I get is from heat and sometimes if I lay on my side. My neck and right shoulder are in a constant "twitch" and they hurt pretty much all the time.

Thank you all...
I have not been on the boards for a while and popped on to check out another cancer (friend diagnosed) and thought I would see what is shakin' on head and neck. Glad I did. Mark has an appointment with H&N doc soon and I am going to copy this most recent info from Hal61 and Greend. Mark is doing fantastic, but the spasms, dry mouth, and "herky jerky" (involuntary head jerks) are really his only complaints. But he feels the herky jerky is getting worse. Love all of you guys!!! Mike (Luvulacrosse)love the new pic!!
Kim

buzz99

Kimba1505 said:

Thank you all...
I have not been on the boards for a while and popped on to check out another cancer (friend diagnosed) and thought I would see what is shakin' on head and neck. Glad I did. Mark has an appointment with H&N doc soon and I am going to copy this most recent info from Hal61 and Greend. Mark is doing fantastic, but the spasms, dry mouth, and "herky jerky" (involuntary head jerks) are really his only complaints. But he feels the herky jerky is getting worse. Love all of you guys!!! Mike (Luvulacrosse)love the new pic!!
Kim

Spasms
Buzz also has a stiff, tight neck. I have heard that there is a treatment involving botox injections into the muscle. You might want to look into that. Karen

luv4lacrosse

Kimba1505 said:

Thank you all...
I have not been on the boards for a while and popped on to check out another cancer (friend diagnosed) and thought I would see what is shakin' on head and neck. Glad I did. Mark has an appointment with H&N doc soon and I am going to copy this most recent info from Hal61 and Greend. Mark is doing fantastic, but the spasms, dry mouth, and "herky jerky" (involuntary head jerks) are really his only complaints. But he feels the herky jerky is getting worse. Love all of you guys!!! Mike (Luvulacrosse)love the new pic!!
Kim

GOOD TO SEE YOU POST
Hi Kim, good to hear Mark is doing great. I think about you guys and others who are not on for awhile. I feel great too and have my one year exam and CT coming up this week. 3 weeks ahead of schedule as I have or had a swollen area on my gum / tissue behind my wisdom tooth. Of course I immediately paniced and called my ENT.

The new pic is a tail gate party before the Kansas State Football game with my son's Fraternity. He is the kid on the right side.

Keep us posted on Mark's progress.

Best!!

Mike

ratface

luv4lacrosse said:

GOOD TO SEE YOU POST
Hi Kim, good to hear Mark is doing great. I think about you guys and others who are not on for awhile. I feel great too and have my one year exam and CT coming up this week. 3 weeks ahead of schedule as I have or had a swollen area on my gum / tissue behind my wisdom tooth. Of course I immediately paniced and called my ENT.

The new pic is a tail gate party before the Kansas State Football game with my son's Fraternity. He is the kid on the right side.

Keep us posted on Mark's progress.

Best!!

Mike

Will almost entirely eliminate those nagging pains. These are gentle practices that almost always incorporate spinal twists engaging the head, neck, tongue, cheeks, eyebrows and eye sockets. Many practices incorporate these techniques as a sort of cool down and that is all he need do to get started. Every other day, 15 minuetes a day, no more pain.

KTeacher

ratface said:

Will almost entirely eliminate those nagging pains. These are gentle practices that almost always incorporate spinal twists engaging the head, neck, tongue, cheeks, eyebrows and eye sockets. Many practices incorporate these techniques as a sort of cool down and that is all he need do to get started. Every other day, 15 minuetes a day, no more pain.

Rat, can you give me more information about restorative yoga. Do you have a DVD or are there classes offered? My last radiation treatment is tomorrow and I am looking forward to feeling better.

ratface

KTeacher said:

Rat, can you give me more information about restorative yoga. Do you have a DVD or are there classes offered? My last radiation treatment is tomorrow and I am looking forward to feeling better.

I am certainly not an expert on yoga but do know a good thing when I find it and yoga really is tailor made for head and neck cancer patients. Just for comparison I had 39 radiation treatments, chemo, and a left side neck dissection. The neck will never be the way it used to be but overall I can feel the difference yoga makes. If I skip yoga just for a few days it begins to tighten and ache and just generally cause discomfort.

I practice yoga at home on dvd. Generally speaking the restorative part I have experienced for the head and neck is at the end of an individual practices in the cool down/relaxing phase where particular attention is focused on the head, neck area. It can get quite focused on the eye sockets, the tongue, the cheeks, the areas where we need to stretch and relax. The spinal twists leading to this portion are of great benefit in stretching the neck muscles. I maintain full range of motion with little discomfort as long as I maintain yoga. I find it invaluable as we can all relate to the painful spasms that can occur after a neck dissection. Additionally yoga will provide countless other mental rejuvenating benefits that any cancer patient will find welcoming. This occurs because yoga forces you to live in the present moment and thus forget cancer for a few precious moments per day.

I searched Amazon for you and they have several dvd's under "restorative yoga" read the reviews and just try one. I also recommend "The GIFT OF YOGA" a Hatha style yoga concentrating on relaxation but also a good workout. I think this is a good starting point for you. Gena Kenny the instructor is very soothing and a good teacher.

I can't say enough about Mr. Rodney Yee. The man is the king of yoga and where I originally discovered restorative yoga buried at the end of one of his dvd's. This guy does everything well and you just can't buy a bad DVD with him in it. Again tons of choices on Amazon. I hope you just try one yoga practice and decide for yourself as it really has paid huge dividends in my recovery. Namaste!

KTeacher

ratface said:

I am certainly not an expert on yoga but do know a good thing when I find it and yoga really is tailor made for head and neck cancer patients. Just for comparison I had 39 radiation treatments, chemo, and a left side neck dissection. The neck will never be the way it used to be but overall I can feel the difference yoga makes. If I skip yoga just for a few days it begins to tighten and ache and just generally cause discomfort.

I practice yoga at home on dvd. Generally speaking the restorative part I have experienced for the head and neck is at the end of an individual practices in the cool down/relaxing phase where particular attention is focused on the head, neck area. It can get quite focused on the eye sockets, the tongue, the cheeks, the areas where we need to stretch and relax. The spinal twists leading to this portion are of great benefit in stretching the neck muscles. I maintain full range of motion with little discomfort as long as I maintain yoga. I find it invaluable as we can all relate to the painful spasms that can occur after a neck dissection. Additionally yoga will provide countless other mental rejuvenating benefits that any cancer patient will find welcoming. This occurs because yoga forces you to live in the present moment and thus forget cancer for a few precious moments per day.

I searched Amazon for you and they have several dvd's under "restorative yoga" read the reviews and just try one. I also recommend "The GIFT OF YOGA" a Hatha style yoga concentrating on relaxation but also a good workout. I think this is a good starting point for you. Gena Kenny the instructor is very soothing and a good teacher.

I can't say enough about Mr. Rodney Yee. The man is the king of yoga and where I originally discovered restorative yoga buried at the end of one of his dvd's. This guy does everything well and you just can't buy a bad DVD with him in it. Again tons of choices on Amazon. I hope you just try one yoga practice and decide for yourself as it really has paid huge dividends in my recovery. Namaste!

Thank you
Mr. Rat, Thank you for the reply. I am just finishing my second go around with radiation today. Last year I was pretty beat up, my weight loss was so much muscle, I was weak. I know that I have much to do to get better this time. I had the neck dissection in July and am doing well, just want to do better! I would not know what to look for in yoga, so thank you for some names. We do not go through this alone. I am so thankful for this site.