Radiation indused fibrosis .

I wrote in almost a couple of years ago on this subtect  regarding the terrible neck pain caused by radiation.I got some advise from others,but none of their sugestions worked for me . Actually it is 4yrs now since my surgery and radiation was finished . I just wonder if since I asked for help, anyone has come up with any other " tips " they could share with me  that may help. My pain just gets worse !!      Thanks.

                   joanie33

Hi Joanie

unfortunately, I cannot offer you any tips on this subject.  I hope that someone can jump in and give you some information.

Julie

On Jun 19, 2012 7:44 PM Joanie33 wrote:

I wrote in almost a couple of years ago on this subtect  regarding the terrible neck pain caused by radiation.I got some advise from others,but none of their sugestions worked for me . Actually it is 4yrs now since my surgery and radiation was finished . I just wonder if since I asked for help, anyone has come up with any other " tips " they could share with me  that may help. My pain just gets worse !!      Thanks.

                   joanie33

Joanie,

I can't understand why more patients are not complaining about this symptom.  Each day I struggle with pain and strange sensations coming from within my neck muscles.  I did not have a neck dissection.  I don't think I could have handled it.

From a remedy point of view it seems like Aleve (naproxen sodium) does help.  Most of the literature that I have read says that massage/palpitation of the neck muscles helps some people.  In my case I don't like to be touched by people that I do not know.  It is bad enough to have to surrender to the doctors and medical technitions.  Sorry for the digression.

Mark

On Jun 20, 2012 5:42 PM mark5004 wrote:

On Jun 19, 2012 7:44 PM Joanie33 wrote:

I wrote in almost a couple of years ago on this subtect  regarding the terrible neck pain caused by radiation.I got some advise from others,but none of their sugestions worked for me . Actually it is 4yrs now since my surgery and radiation was finished . I just wonder if since I asked for help, anyone has come up with any other " tips " they could share with me  that may help. My pain just gets worse !!      Thanks.

                   joanie33

Joanie,

I can't understand why more patients are not complaining about this symptom.  Each day I struggle with pain and strange sensations coming from within my neck muscles.  I did not have a neck dissection.  I don't think I could have handled it.

From a remedy point of view it seems like Aleve (naproxen sodium) does help.  Most of the literature that I have read says that massage/palpitation of the neck muscles helps some people.  In my case I don't like to be touched by people that I do not know.  It is bad enough to have to surrender to the doctors and medical technitions.  Sorry for the digression.

Mark

Hi Mark, 

I agree, I can`t understand the lack of complaints either. I`m told that the fibrosis in the neck is spasms in the muscles. There is no cure for them and it can get worse !!! 

Do you have the feeling of a noose around the neck that just gets tighter and tighter ?? 

I don`t know what your original problem was, but I presume you had radiation that has caused this ......right ?

I cannot take any anti-inflamatory medication because of a previous stomach ulcer, so I`m out of luck with Aleve.

Keep in touch Mark, and if I find anything that helps you can be sure you will hear from me.

         Joannie 

I am almost  3 years out from cancer and I do have neck fibrosis. I streach my neck several times a day, several like six!Hard to exolain the streach, but a PT gave it to me. BTW I did have quite a big blast of radiation over a wide field, anyway here goes. It is actualy the right side of my neck that hurts, so I hold a 25 pound dumbell in my righr hand. This pulls one side of my neck down, then with my left arm I pull my head over to the left, I hold the streach for 30 to 45 secondsthis truly  streaches the heck oout of ther nerck. For a long time I had "opiate level" pain every day, now it almost never hurt.

Steve

Mark and Joannie,

You might not hear of lingering pain because not everyone has it.

I had a modified radical neck dissection, then radiation to my entire neck, as they couldn't find the primary.  I've been out of treatment for 16 months.  I only ever took one pain pill for it, and that was in the hospital at the nurse's insistence.

I don't really have any pain as a result of either the surgery or the radiation.  The left side of my neck is still partly numb from the incision upward, due to severed nerves, and I do have a lot of tightness on that side, which is worse at some times than others. 

My RO gave me instructions to do "gentle massage" to the area myself several times a day to prevent fibrosis and lymphedema.  I was pretty good about doing it for the first six months or so, but rarely do anymore.

Have you explained this to your doctors?  You shouldn't have to deal with so much pain for so long. 

Best of luck to you with this.

Susan

Hi Joanie,

Doctors are often busy and accept side effects as all part of the necessary treatment. However, if there is a problem there has to be either a cause or causes. Where there are causes there are usually solutions.

If you can get hold of a book called the A-z of Drug, Herb, Vitamin interaction by Dr Alan Gaby (Healthnotes) It has detailed information on the side effects of many drugs, and what can help alleviate these. There are five pages on chemotherapy alone. I just glanced through it, and although it doesn't appear to specifically mention this side effect. It does say "Some chemotherapy drugs cause excessive loss of magnesium and potassium."

I now quote an online (unrelated) article:

Magnesium is a mineral that is essential to the human body, playing a role in nearly all bodily functions and contributing to most body tissues. Many of people do not get enough magnesium in their daily diets, a lack that can contribute to a wide range of symptoms, neck pain among them.

I am out of treatment since November 2011.  My treatment was a neck dissection, followed by radiation.  I too have neck pain daily.  Sleeping is aslo a problem.  Between the dry moth, getting a drink, going to the restroom, and trying to find a way to sleep with the neck pain poses challenges every day.  I had hope that this would improve in time, but I must admit after the feeling came back into my neck, it has been downhill.  If you get any releif, please let me know.  So sorry you are still in pain this far after treatment

Debbie

On Jun 19, 2012 7:44 PM Joanie33 wrote:

I wrote in almost a couple of years ago on this subtect  regarding the terrible neck pain caused by radiation.I got some advise from others,but none of their sugestions worked for me . Actually it is 4yrs now since my surgery and radiation was finished . I just wonder if since I asked for help, anyone has come up with any other " tips " they could share with me  that may help. My pain just gets worse !!      Thanks.

                   joanie33

Joanie,

I am sorry that you are having so much pain. I would recommend that you talk with your physician about hyperbaric oxygen therapy (HBO). Several studies have shown that HBO is a valuable adjunctive therapy in the treatment of soft tissue radionecrosis, osteoradionecrosis (irradiated bone) and osteomyelitis (bone infection). HBO will help decrease the infection, decrease swelling, grow new blood vessels in the irradiated tissue and possible avert the need of repeated antibiotics, pain medication and surgeries.

I hope this information is helpful.

David Davis, BS, RRT, CHT

www.sharedhealthservices.com

Four letters: HBOT!  Hyper Baric Oxygen Therapy.

I was badly burned and it helped soooo much. Took off the heat, reduced swelling and redness IMMEDIATELY.  Helped build new blood vessels to stop the scarification process. The fibrosis is healthy tissue dying and becoming a giant lump of scar tissue in your body.  HBOT helps it get blood and nutrients again so it can stay alive or re-grow and the dead calls can be eliminated.  I don't have much lumping now, the irradiated area seems fairly normal, just a bit tender still since it's newly healed.

It's time consuming but a very pleasant experience. I just watched movies during forty 90-minute sessions over the course of 2 mos. Felt very refreshed after each one.  I wish everyone could use this after radiation, it was one of the only truly HEALING experiences to eradicate the cancer.

Although my radiation was recent, the Dr told me it can help patients even when the radiation was done years before.  Your insurance may cover it; I understand Medicare does in some cases.

http://www.cancer.org/Treatment/TreatmentsandSideEffects/Com