CSN Login
Members Online: 2

You are here

Long Term Effects of Mantle Radiation for Hodgkins Disease - Dropped Head Syndrome

viola43
Posts: 19
Joined: Aug 2011

I've read about a number of people experiencing neck and shoulder pain along with dropped head syndrome as long term effects of Hodgkin's Disease. I have experienced these symptoms for over a year and my doctor believes these are effects of radiation. I was treated 18 years ago and have basically been healthy. I am wondering what people have done to deal with this - any hints? PT has been unsuccessful and I often wear a soft collar at the end of the day. I would appreciate suggestions how to best handle this and still maintain a normal life. Thanks.

cathyp's picture
cathyp
Posts: 373
Joined: Dec 2009

The term for this is Radiation Fibrosis Syndrome. I will have my first appt in Oct. at MSKCC with a specialist who deals primarily with long term HL survivors. He has a specific PT protocol that helps, but nothing can "cure" this for us. Do you find your symptoms come and go or is it conctant for you? I have been wearing the collar for a couple of days every few weeks or so.

Cathy
HL 1989,194
idc 2008

viola43
Posts: 19
Joined: Aug 2011

Thanks for your comments. Is MSKCC Sloan Kettering? I would be interested in knowing about the PT protocol since the PT I have had on and off for almost 2 years has been only very mildly helpful. My symptoms come and go but more recently they are constant, especially as the day wears on. Today I am seeing a physiatrist to see if there is any treatment to alleviate some of the symptoms such as medication or injections. How long have you had your RFS symptoms and have they significantly progressed? Good luck with your appointment! If I lived on the east coast I would definitely go to Sloan Kettering Long Term Effects Clinic.

cathyp's picture
cathyp
Posts: 373
Joined: Dec 2009

Yes MSKCC is Sloan Kettering. I am 2 hours away. I think that after I see the Dr, I will have to see their PT's first. Then I will be able to do a home theraphy program or take the recommendations to a local PT.
My symptoms have started in the last year, 20 years after the radiation treatments for HL. I never have a problem until my activity level was reduced by working full+ time. Up till then, I was mowing numerous lawns, doing tons of yard work and helping clean for many clients. I then went to work in an office and eventually, using a PC all day started to take its toll. Our office PC monitors are not at the correct level and I could work at many different stations throughout the day. This spring, I did the spring yard cleanup and the next day drove round trip 4 hours. While driving I wasn't able to move my neck it was so sore and stiff. Since then, my symptoms come and go, severe pain and neck weakness for 2 days and then it mysteriously lessens. A few times, I've used a cervical collar for support. Then I'm out hiking for 2 hours with no problem. Hopefully Dr S can shed some light on this. Physically, I have "pencil neck", from the rads, very thin neck and my shoulders round in looking like I have terrible posture.
Thanks for the well wishes, I'll let you know how it goes. I have to wait till end of Oct to cooridinate it with some other appointments for long term effects.

Cathy
1989, 1994 HL
2008, IDC

viola43
Posts: 19
Joined: Aug 2011

My symptoms started about 2 years ago with a stiff neck, particularly an inability to fully turn my neck to either side. At that time they thought it was due to to arthritic changes. A year ago I rowed a boat in a lake and when I came to shore I could barely lift my head. Since that time it has been on and off like your situation but now I almost daily wear the soft collar part of the day. I went to a wonderful rehab doctor today who is going to determine through EMG what the big picture is. She had many ideas and will make recommendations once the tests are done. She thinks water therapy will be very useful. She knows about Dr.S. I also have pencil neck and rounded shoulders and find it hard to stand up straight. It sounds like you are an energetic and hard worker and I hope these changes have not altered your life style too much.

Viola

cathyp's picture
cathyp
Posts: 373
Joined: Dec 2009

I'm happy to hear that your doctor is aware of Dr S.! It will be interesting to hear the EMG results. I don't know if RFS symptoms are caused by the muscle "wasting" and or a nerve problem. Keep us updated!

Cathy

viola43
Posts: 19
Joined: Aug 2011

Cathy, it sounds like you've had similar symptoms for about the same amount of time. I was wondering if it has interfered with your ability to work. I find by mid-afternoon I have to wear a collar or take some medication to keep on doing what I am doing. I was just wondering if you have experienced that.

Viola

viola43
Posts: 19
Joined: Aug 2011

duplicate

JanetGreen91's picture
JanetGreen91
Posts: 5
Joined: Mar 2017

I am having trouble finding a doctor in Columbus Ohio who knows how to diagnose RFS and I'm feeling discouraged.  They say it's cervical arthritis or DDD but It doesn't hurt to turn my head side to side at all.  It is in the muscles but they don't believe me.  I had mantle radiation for mediastinal tumors in 1991 and progressively been getting worse with upper middle back muscle burning/stabbing pain that radiates down my left arm nerve causing involuntary muscle.  Looking up or down for more than a minute is excruciating and often causes the dropped head feeling.  I can deal with having had thyroid cancer 2013, 3 basal cell cancer spots within the radiaton field treated, and the elevated resting heart rate of 100 but this back and arm pain is beginning to take over my life and stop me from doing everyday things.  I'm only 53 years old!   

po18guy
Posts: 1097
Joined: Nov 2011

Ever suffered a whiplash? Have you been screened for possible degenerative cervical disc disease? Just a thought. As to long-term radiation effects, I think that you are most likely to find a specialist at a National Cancer Institute designated cancer center. There are two in Ohio, and you may already have been to James CC?

Case Comprehensive Cancer Center

Case Western Reserve University
Cleveland, Ohio

Stanton L. Gerson, M.D.
Director

11100 Euclid Avenue, Wearn 151
Cleveland, Ohio 44106
Main: (216) 844-8797

The Ohio State University Comprehensive Cancer CenterJames Cancer Hospital and Solove Research Institute
Columbus, Ohio

Michael A. Caligiuri, M.D.
Director

460 West 10th Avenue
Columbus, Ohio 43210
Main: (614) 293-5066
Toll Free: 1-800-293-5066

 

.

 

illead's picture
illead
Posts: 862
Joined: Aug 2012

I also had the arm pain. No cancer, my husband is the one.  Anyway I thought it was a herniated disc.  The pain was excrutiating and lasted for about 8-10 months, 2 years later it happened to the other arm but a different kind of pain but still excrutiating.  I took celebrex and it really helped the first arm, nothing helped the other arm.  I had an MRI on my neck a yr. or so ago and I have major arthritis in my neck, basically bone on bone.  I am not in pain now and no meds but my shoulders are weak and a litlle painful at times but nothing like the initial pains.  It sounds like the same thing you are experiencing.  Acupunture helped a little too.  So far I am living with it.  My husband's back surgeon says surgery would be a last resort, it's pretty serious.  Hopefully the pain will go away eventually if it is arthritis.

Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

Janet,

I have not had (known) bone pain secondary to cancers or chemo (well, except fpr Neulasta injections), but can speak a little on the subject of arthritic pain.

I broke my back at T9 30 years ago in an accident (compression fracture).  Soon thereafter 2 disks completely collapsed; as Illead said, 'bone to bone.'  I then developed severe trauma-induced scoliosis, which is a side-to-side warpage.   How I'm not sure, but up a bit at T1 I got a trauma-induced kyphotic deformity (hunchback effect). Kyphosis is defined as a curvature of 30% or more from straight-normal. As kyphotic warpage is front-real, with the scoliosis added, my spine is corkscrew shaped; I have had radiation staff come out to the waiting rom after films were taken, to gawk at me and speak briefly, so astonished were they.  This spot at T1 still hurts significantly at times, but the T9 area, after about 20 years, quit hurting at all. T1 is a stabbing sensation, as if a knife blade is being thrust in.  I use a Ben Gay type patch on that which works quite well.

My head at times won't turn left, and I have to pop it loose with my hands. I am assuming this is happening at C1 at the skull base.

Two years after the wreck (28 years ago) films said I had massive arthritic involvement throughout the T region and much of the C region, but little in the L region of the spine.  Doctors have told me what I have is totally inoperable.  Chiropractors refuse to treat me.

I have ossification (spurs emerging into soft tissue) of the hip plate, and an orthopedic doc put me on Celebrix about 15 years ago, but it did nothing. He then substituted Mobic, which worked very well, something worth sharing. Both are similiar and asprin-based, but the one did not work for me, the other did.

I guess what is most curious is that I have little arthritic pain most of the time, and ordinarily take nothing.  Most of the pains went away over the years, I have no idea why. (I also have both scapulars broken, 13 rib fractures, a ripped loose kneecap/reattached, and a destroyed/repaired  femur, all of which no longer hurt either.

I also had spurrious neurological symptoms in the early years:  an arm would quit working, have electric shock sensations, and others. I went for electrical conductivity tests, in which an electrical box with leads were placed into my back and hand at differening spots, to see if nerve current was correct, exactly the way an electrician would test a circuit in a house.  The electrical never issues healed also.  My sternum was displaced, and at times today it feels like a cell phone is vibrating on my chest, no idea why. This has never happened more than twice in a day, usually less than that.  (I have never had a pacemaker or defib device.) This is so marked that I reach for a cell phone in my shirt pocket occasionally.  I am clueless, and don't even mention it to doctors; they just shake their heads and say they havn't the least idea either for most of what I used to describe.  If something is not in most doctor's PPDR or Repair Manual, often they just ignore it.

These things are odd, put the positive take away for me is that they sometimes simply go away, as Illead suggested.  You may want to try the Mobic and the ortho pain patches if necessary.

max

Subscribe to Comments for "Long Term Effects of Mantle Radiation for Hodgkins Disease - Dropped Head Syndrome"