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

RFS
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 said:

RFS
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.

PT for RFS
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

JanetGreen91 said:

RFS diagnosis

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!   

I would consult with a major cancer center

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

 

.

 

Generally on topic

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