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

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

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

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.

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.

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.

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.

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