CSN Login
Members Online: 4

Neck atrophy and slumped shoulders

bwg1014
Posts: 2
Joined: Jan 2014

After a diagnosis of neuroblastoma in October of 1992, my 1 year old son went through 9 months of chemo, 12 doses of radiation to the neck and chest, and 2 surgeries, one of which removed 24 lymph nodes from the neck. Over the years, there have been several unusual characteristics that he has developed, that we have always suspected had something to do with his cancer and subsequent treatments, but doctors have never confirmed. 

First, after his first treatment, he developed a set of "stripes" that extended from the back of his ankle up to his rear end. This appears to be a loss of pigment, and as he has grown, these stripes have stretched, but are fairly proportional in size to their original appearance. 

Second, he has two teeth, about the 4th back from the front top on both sides, that are the size of baby teeth. 

Next, even though my son is extremely athletic, and works out for football, baseball, and soccer, his unusually small neck will not develop. He is 5'10" but has a smaller than 14" neck. He also complains that his upper chest does not show any muscle gain. He has good muscle growth in his abdomen and legs. 

Finally, his shoulders roll forward, creating a slightly humped back. After breaking a collar bone, he asked the doctor about this, and the doctor said it appeared that he had short clavicles. 

Has anyone else had similar experiences?  We are wondering if there is anything that can be done to counteract these symptoms, or even if they are actually caused by the cancer experience. 

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I would think that your sons neck muscle atrophy and rounded shoulders are indeed from the radiation tx's.  I was 29 when I had my radaition for Hodgkin' Lymphoma and I have the atrophy and rounded shoulders (the chest fascia is pulled tight which rolls the shoulders forward and inward) Specialists have confirmed both are from my treatments.  Since your son was growing while undergoing radiation, it seems he would be effected more so.  Have you considerd consulting with a pediatric Long Term Follow up Specialist?  As for the stripes, I had "tiger stripes" from one of my chemo agents.  Perhaps that may explain your sons.

Best wishes as you sort this all out!

Cathy

bwg1014
Posts: 2
Joined: Jan 2014

Thanks for your reply. I haven't consulted with a specialist because doctors didn't seem concerned with these oddities, and so I just thought they were something unique to him. We went for a follow up when he was 16 and the doctors just said they had never seen the stripes before, and didn't comment on his shoulders. However, since then my son has lifted weights, taken protein shakes, etc to try and build up his neck and chest muscles, to no avail. It has become apparent to us that there is something different about his body. 

cinnamonsmile
Posts: 1129
Joined: Dec 2010

I had to go to occupational/physical therapy for severe scar tissue adhesions and got myofascial release therapy. In addition to the scar tissue on my chest, my shoulders were being pulled inward and I was hunched over to the front. I already had bad posture, and the scar tissue adhesions made it worse.

It took me months of occupational therapy.

Maybe you could try some ot/pt therapy with an experienced therapist? It is just a thought/suggestion.

Sometimes WE HAVE TO MAKE THE DRS NOTICE AND CARE WHEN THEY DON'T!

I wish you luck and am so sorry to hear your story.

Butterfli7's picture
Butterfli7
Posts: 10
Joined: Jul 2015

I am new to the site and wished I had found it sooner.  I would not have felt so alone out there.  I had treatments in 1987.  All I can say to you as a mom is fight for your son.  Unfortunately there are only a handful of specialized doctors out there that know about long term symptoms from radiation.  I am now 56 and have had the same problems and more that your son is having since 2004.  It took me until 2009 to get a diagnosis of neck fibrosis.  Keep up the fight for your son.  When I started telling doctors of my symptoms they would look at me like I was crazy and had two heads.  Physical therapy may help with his neck and shoulders.  I now wear a hard collar that I got from an orthopedic doctor because it is so difficult to hold my head up on my own without being in pain.  I also have trouble with food getting stuck in my throat.  Also not to scare you let him know when he gets older to go to a cardiologist and be checked.  I had a heart attack and tripple bypass surgery in 2014 and the doctors said it was due to radiation treatments.  I am fine now.  I also have restrictive lung disease which is coming from the fact that my shoulders slump over also and it causes your lungs to have less room the expand.  The shoulders slump over because it stops the muscles to constrict and tighten in the pecs areas.  I think some of the doctors know our problem it is just getting them to say it.  I hope I have not upset you by letting you know my other symptoms.  I only tell you because I wish I had known what I could have done early on to help me have a better quality of life now.  It is going to be an ongoing battle to fix the muscles and in all the work ahead for him with that he still may not see any fix for it.  I wish him and you lots of luck in your adventure of being a long term survivor.

viola43
Posts: 19
Joined: Aug 2011

hi Buterfli7,

i am a 20 year survivor of Hodgkin's Lymphoma and have had serious RFS for 5 years from radiation. I go to Sloan Kettering long term effects clinic every few years for follow-up. I have tried 2 different rigid collars for neck weakness and pain but I am always interested in how others are managing their symptoms.  Would you please describe the collar you received from an orthopedist? Thanks. I am finding that PT (myofascial release) and acupuncture are most helpful for my symptoms right now.

Thanks, Viola

Butterfli7's picture
Butterfli7
Posts: 10
Joined: Jul 2015

Viola,  

  Good to hear from you.  I have a vista by aspen.  It is the hard collar with lots of adjustment features on it.  It is not a pretty thing but it helps.  My neck is long and skinny so the adjustments are a good feature.  I did purchase a collar called the headmaster.  I don't use it though.  It puts a lot of pressure on the jaw area and gives me a headache within five minutes of using it.  Just put headmaster collar in the computer and it shows a picture.  I did PT for two months.  My neck felt better for about 30 minutes then back to square one. I do not live close enough to the Sloan Ketttering clinic.  I went to the orthopedic doctor because I had bought the headmaster out of my pocket and did not like it, so I went to the doctor to see what collar he had to offer and let it go through my insurance company.  I am only 56.  After my heart attack in 2014, I had a really hard time with my neck, strength wise.  I also have restrictive lung disease and scarring due to the radiation.  I am trying for disability now.  Do you know of anyone who tried for disability for neck fibrosis and got it?  I am having a hard time getting mine to pass. They said since I had done a job keying on the computer,  I was able to still work. They should have to carry a load of bricks on their head for a while and see how their neck feels. 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2015 © Cancer Survivors Network