Success with Adjuvant PVNS Radiation Treatment, Story

Why Did I Choose To Have Adjuvant PVNS Radiation Treatment

 I had my first "open knee synovectomy" for diffuse Pigmented Villonodular Synovitis on Dec 14, 2011. My oncologist orthopedic surgeon assured me that she had removed all visible signs of the pvns - which is a very aggressive nonmalignant tumor of joints with synovial tissue such as the knees, hips, elbows, ankles etc.  She emphasized that it only takes a single PVNS cell to reseed and begin the process of tumor growth. I was uncomfortable with the variable yet high recurrence rate of up to  60%, even when all visible tumor had been excised.

I read many research studies comparing the short and long term statistics of  chemotherapy, and radiation therapy as an adjuvant treatment for diffuse pvns.  I found that I wasn't a candidate for chemotherapy due to having polyneuropathy, so the only other treatment available in my case was external radiation treatment. 

Radiology Oncologist Assessment

I constructed a {list of questions} to ask my radiology oncologist, at my consultation appointment. The answers to these questions are case specific, but the following is in general.

In my case, pvns recurrence after an open synovectomy was estimated to be in the high 40 percentile. Open synovectomy with adjuvant external radiation would reduce my recurrence rate to the mid-teen percentile. 

I was concerned about rumors of external radiation treatment dangers such as the possibility of forming a secondary cancer. I was assured by my radiology oncologist and years worth of research, that this fear was totally unfounded. There has never been a reported case of secondary cancer from PVNS radiation treatment. 

The level of risk as explained by my radiology oncologist..."you are much more likely to suffer from a serious adverse reaction to anesthesia during surgery than to experience a secondary malignancy caused by radiation treatment for pvns." There are possible complications and risks associated with all treatments, including repeated surgeries... so the risks and benefits must be carefully evaluated.

I'm neither for or against radiation or chemo in the treatment of PVNS, because they both have a place in it's treatment with their own unique risks. Recent studies are showing that they have nearly the same effectiveness. However there are additional concerns that should seriously be looked at when using a systemic drug on a disease that is confined to one joint. Unfortunately, I've found that many of the physician promoting chemotherapy agents have some type of association or financial interest in promoting chemotherapy drugs and their trials. A consultation with an oncologist or radiology oncologist will be able to provide you with a personal risk for these adjuvant treatments.

Radiation Therapy Experience

On my seventh week post synovectomy, I decided to have 18 external radiation treatments of 200 greys each, Monday - Friday for 3 1/2 weeks.  This is the normal radiation dose used by most physicians for the treatment of diffuse pvns in the knee. 

Second week of radiation treatment: I've had four treatments, flexion range of motion (ROM) 84º, extension is normal, pain 3-4 with increased activity, increasing fatigue and swelling.

Third week: I've had nine treatments, flexion ROM 84º, I'm feeling the cumulative effects, pain 3-5, slight burning sensation, vice grip feeling, heat at site, darkening of skin, swelling, fatigue is overwhelming. I had to back off on physical therapy due to the swelling interfering with proper positioning of my knee during RT delivery. Compression, elevation, ice, and medication is helping to control the side effects.  

Fourth week: I've had 14 treatments, flexion ROM 74º. I'm finding that it's a challenge to keep my attitude in check as the fatigue drains my ability to keep pace with my normal daily activities. I'm told that the fatigue will pass as my body recovers from the treatment. 

Fifth week: I've had 18 treatments and I'm now finished with radiation. Flexion ROM 81º It is now 12 weeks post op and I have physical therapy 3-4 days a week to work on increasing my ROM.

16 wk post synovectomy, 4 wks post radiation therapy and my flexion ROM has been stuck at 81 degrees for 2 wks. Prior to RT my ROM was at 84 degrees. I lost 10 degrees during RT= 74 degrees, regained 7 degrees the 1st 2 wks post RT

18 week post op my flexion ROM is stuck at 81º and I am now having  a knee manipulation under anesthesia followed up by aggressive physical therapy. This procedure worked well in breaking up scar tissue and my flexion ROM is now at 113º.

PVNS and Pain Free 15 months post synovectomy, RT, manipulation, false pvns recurrence and arthroscopy, several months of physical therapy, partial knee replacement with flexion ROM now at 118º. Normal knee flexion is 130º

In summary, I feel that I've attacked this disease as aggressively as possible, and only time will tell if my choices were worth the risks. I know that the radiation treatment damaged my knee in the sense that it caused additional scar tissue. Although, surgery also caused scar tissue. Hopefully I will remain in remission, and I'll  have MRIs done every six months and eventually yearly for the rest of my life. The partial knee replacement will make the MRIs even more difficult to read, but it was necessary since the pvns and treatments left me with painful bone on bone arthritis.  

Making The Right Decision

I will be very cautious in approaching any surgery for a possible recurrence of pvns, since I've already had one false positive recurrence on the MRI reading (scar tissue). One year after my synovectomy, I had an arthroscope which ruled out a pvns recurrence, my meniscus was repaired, and that's when they discovered that I needed a knee replacement. 

Nearly a year after making my decision to have external radiation treatment after my first synovectomy....I'm seeing a trend toward more aggressive treatment on the onset of pvns and not waiting until there has been a recurrence. I honestly don't know if this is a good thing or not. Once again only time will tell. Obviously my thoughts were to throw every weapon  at it, to kill it off on the initial assault, and so far it has worked for me. I can't say this is the right route for others because there are just too many variables in each case, and I'm not a doctor. The information that I share, are links to empirical studies, otherwise it's just my personal opinion based on my experience, and it should not be taken as medical advice. 

When I was under the impression that there was a recurrence of the pvns...I questioned whether I made right decision to be treated with radiation. However, I feel strongly that it was worth decreasing my recurrence rates by having the radiation treatment, and I would do it again. Only time will tell if I will remain in remission. One year after my open synovectomy I had a partial knee replacement.  Nearly three years later, I remain pvns and pain free, but I will never know for sure if RT has played a role in my positive outcome or not. Statistics point to yes, but there are others that have had less than satisfactory outcomes. 

Riding Accident Led To MRSA...How To Avoid Infection

Personal Experience With MERSA

Playing horse tag and racing our horses at the ranch seemed like a harmless activity, but on this particular day in the mountains of Montana, my life was nearly changed forever. Growing up I had been graced with the presence of horses in my life, and being challenged to a sprint was common place. I had accepted the challenge, and my horse and I were determined to win. With the cool Montana wind blowing in my face and thundering clap of my horses hooves hitting the trail, he had a misstep. I suddenly found myself being forcefully thrown to the ground and my horse tumbling along side of me.

I was panic stricken as my first thought was of my horses safety, but he had immediately returned to his feet and motionlessly stood next to my body on the ground. To much relief, my horse was fine but my wellbeing was yet to be determined.

As a search and rescue trauma medic, I proceeded to assess my own injuries. Even with a helmet on; the buzzing in my head made it obvious that I had sustained a concussion. Trying to draw in my first few breaths were near impossible since the impact had knocked all of the air out of my lungs. After a few seconds,  I was finally able to take a few short gasps. I began going through my mental check list. Conscious-check, Breathing-check, No numbness or tingling of extremities and neck in alignment-check, No obvious broken bones, however, my shoulder was questionable-check. A few minor scratches but no gushing blood-check

I appeared to be ok, and had escaped serious injury, even though I knew that many bruises and muscle strains would become obvious within the next few hours. Others helped me to mount my horse, because my injured shoulder was being uncooperative. We all returned to the stables and I went for x-rays, which turned out to be ok. I finished out a rather painful week at the ranch and I was anxious to return home.

 Back in Arizona, and terribly bruised, I noticed a minor scratch had become severely inflamed, even though I had been putting antibiotic cream on it. Within a few hours I began feeling ill and feverish so I went to the emergency department. As suspected I had a raging infection, but what I didn't expect to be told was that it was MRSA staph infection.

I was admitted to the hospital on IV antibiotics but they had little effect on the infection. Within a few hours, the once tiny scratch above my ankle had turned into an oozing hole of necrotized tissue. As I was being wheeled into surgery, fear began to take root as I realized that I could loose my foot and possibly my life. I had just moved to Arizona, I didn't know a soul and this was not a good time to be alone.

I awoke in recovery not knowing if my foot was still attached, but the nurse calmed my fears by letting me know that they were able to save the limb. I wasn't out of the woods yet, but I had my bags packed for the journey. After a few days had passed, I was discharged to outpatient wound care.

It took months of specialized care for my wound to heal, and in the process I learned much about infection control. Although I didn't contract my infection in the hospital, I had to learn how to avoid a hospital acquired infection, since I would be facing surgery for pvns in the near future.

You may realize that the hospital is a harbor for life and limb threatening bacteria, but have you thought about how they could find their way into your body?

General Information About Staph

First of all, studies show 25-30% of people in the general population carry staph without any signs or symptom and this statistic is much higher in hospital personnel.

Secondly, staph is easily passed on through physical contact, or even when people touch the same objects and surfaces, like silverware, towels and railings.

Precautions that I take 

1. Shower with Hibiclens prior to surgery and continue until wound is completely healed. Hibiclens helps to get rid of staph bacteria on the skin. 
2. Be conscientious of what has been touched by others, food trays, blankets, pens, crutches, physical therapy equipment, etc. 
3. I’m not a germophobic but honestly you can’t wash your hands enough. Staff should always wash their hands (where you can see) prior to touching you or your items. If an item falls on the floor be aware that it is now contaminated by germs that hitchhiked on the soles of everyones shoes. 
4. Upon arrival home, I immediately shed any clothes that I had on at the hospital, wipe down my possessions and sponge bath with Hibiclens.  
5. Everyone becomes anxious to take a real shower after surgery, however, getting an incision wet "before the exterior incision is totally healed" puts you at great risk of infection.

I haven’t had any problems with infection since I began taking these precautions.

Links

Click here to read an informative article about staph infections.

Wonderful Exercise Site

Body Building.com is an informative Exercise Site were you can choose videos on stretching, exercise by body parts and even track your work outs. This is my go to site when I'm not in physical therapy.

References For Children with PVNS

I've been working on finding childhood cases of pvns for a few weeks now and wanted to post some of my findings.  My hope is that this will help with your individual research into the different types and ages of childhood PVNS. 

Numerous incidents of PVNS occurrence within the pediatric population have been well documented, yet it has been stated that PVNS occurs primarily between the ages of 20-50. As I reviewed articles with the terms infant, pediatric, adolescent and teenage populations, I found the following references. Based on a meta-analysis of reports between 1968 and 2007, the age range was found to be between 8 months and 17 years.

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2. Freedman BA, Lin DL, Tis JE. Pigmented villonodular synovitis of the calcaneocuboid joint in an 11-year-old child with subtalar coalition. Foot Ankle Int 28(4):511–515, 2007.
3. Brenner JS. Pigmented villonodular synovitis causing painless chronic knee swelling in an adolescent. Clin Pediatr 46(3):268–271, 2007.
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5. Mukhopadhyay K, Smith M, Hughes PM. Multifocal PVNS in a child–followed over 25 years. Skeletal Radiol 35:539–542, 2006.
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