RT...Questions To Ask About PVNS Radiation Therapy

Questions To Ask Your Radiology Oncologist

1.   Why is radiation a good or poor choice for me?
2.   How many PVNS patients have you treated?
3.   What are my chances of recurrance with or without radiation treatment? 
4.   How does radiation effect the PVNS and healthy cells in my joint? 
5.   What dose of radiation will you be using and how/why did you select that dose?
6.   How often and how long will I receive radiation treatment?
7.   What are the chances that radiation will cause a secondary cancer?
8.   Will the dose of radiation have any effect on fertility?
9.   What kind of side effects will I experience during the treatment?  Fatigue, etc
10.   What is the process for setting me up for radiation and how long will it take?
11.   Will I need a post surgical MRI or CAT scan?
12.   What is mapping and will my surgeon be participating it?
13.   If I have radiation now will I be able to have the same joint radiated in the future?
14.   What is your follow up care plan?
15.   Is there anything that I can do to reduce adhesions from forming?
16.   How much will my treatment cost and do you participate with my insurance?
17.   What is the best time of day to schedule my appointments to avoid long waits?
18.   If I experience treatment complications who do I call and who handles it?
19.   How will my joint be immobilized to prevent movement during treatment?
20. I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

PVNS Pain Management

It's my opinion that anyone dealing with long term pain issues should have a pain management doctor. There are many medications and treatment modalities that can be used to control pain much better than narcotics. Before turning to a narcotic do your research and find out the different modalities, devices and treatments being used for pain control. You may just be surprised. "Recent research has shown that the spread of pain receptors near the site of tissue damage is controlled by a chemical known as nerve growth factor (NGF)." Tanezumab is an injectable nerve growth factor inhibitor that is in phase 3 clinical trials for osteoarthritis. To learn more about pain management go to http://www.guardian.co.uk/science/2011/sep/04/chronic-pain-drugs-medical-research

The bad thing about narcotics is that our bodies get used to them leading to increased dosages in order to have the same pain relief effect...this causes dependence. Eventually the narcotics quit relieving pain because you can't bump up the dosage any higher. They can also mess with the receptor sites and cause the feeling of increased pain when there really isn't any physical cause.  It can easily become a vicious cycle and many people form psychological addictions along with the physical addiction that you will form if narcotics are taken frequently and for an extended period of time.

Staying healthy, active, ice and elevation has helped reduce the pain far more than narcotics. Narcotics have a place but they must be used sparingly. You may be saying but "you don't understand how much I hurt" I was placed in a coma because my heart couldn't handle the extended period of time and the level of pain that I was experiencing with a neuro condition in 2000. I was on max dosages of IV narcotics. Months later my life depended on having a port placed in my chest. They couldn't numb me because of the level of narcotics my body was used to. I felt every slice of the scalpel and every stitch. This was a very difficult lesson to learn. I do understand pain beyond pain. Save the narcotics for when you really need them and don’t use them as your first line of defense in managing your pain. 

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

PVNS Radiation Post TKR

Recently there was a question asked if you can have radiation treatment after a TKR? My orthopedic oncologist said that you can have radiation treatment after a TKR. She said generally they would do it to control symptoms vs controlling the disease because their isn't as much of a natural joint that the pvns can harm. The other question posted was “ how can pvns return after a TKR?” During a TKR they don't take out the entire joint capsule (synovial tissue) because you still need it so your joint will function. There is still a possibility that PVNS could be in the remaining tissues but the chances are reduced.

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

PVNS Cortizone Injections

06/28/2012 

I saw my ortho-oncologist surgeon today and received steroid injections into both knees. The first time she attempted to get the needle in my pvns knee it wouldn't go through the scar tissue and she could only inject a very small amount of medication, pain scale 9.  I had her try again in a different location and it hurt but only lasted 5 seconds, pain scale 3-4. She then injected my non pvns knee that's been hurting and that was a breeze. She gave me a hug after she was finished. The wow factor. 

Bilateral steroid injections in the knees due to swelling and constant pain. Experienced a Cortizone flare increasing the pain for 2-3 days. Had a systemic reaction to the steroids causing severe anxiety, moodiness,  flushing of the face, slight difficulty breathing and increased heart rate, necessitating valium to avoid asthma attack and tachycardia... this lasted  about 4 days. . The symptoms are slowly abating and my knees are feeling much better with very little swelling. Do your research prior to having steroid injections, systemic reactions are rare but can be quite severe and far outweigh the benefits of the shots. I'm unable to have the Cortizone shots again due to the reaction. 

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

Using Ice Correctly: Making Ice Packs

Caution When Using Ice: When using ice only use it for ten minutes. Leaving the ice on too long will result in the body sensing cold and it will respond by forcing blood into the area and can result in additional swelling.

So leave ice on, ten minutes and no longer, then remove the cold and allow the body to return to normal temperature then repeat the ice treatment for another ten minutes.

You should repeat this process several times to obtain a process known as "pumping" that removes toxins and swelling from an area.

How to make your Own Reusable Gel Type Ice Packs

Type 1:

1 cup rubbing alcohol
2 cups water

Food coloring- to identify it as an ice pack and not to be consumed.
2 Ziploc Freezer Bags

Pour liquids into freezer bag, remove air and seal bag. Double bag mixture. Place in freezer and reuse as needed (nice and slushy!). If you have a bag sealer even better.

Type 2:

2 cups water

1/3 cup vodka (80 proof)

Food coloring (any color)...to identify it as an ice pack

2 Zip Lock Freezer Bags, may duct tape edge for added security 

Type 3:

Frozen Beanie Babies will stay cold about 20 minutes. great for kids.

TIPS: 

When taking packs from the freezer to use, wrap in towel first before applying to body. If they freeze too hard and aren’t slushy, simply allow them to melt and then add more alcohol.

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

PVNS Radiation, Recurrence Update

Stats on external radiation are looking good and decreasing recurrance to 15-20% vs 45% in diffuse pvns. That is why an increasing amount of physicians are utilizing it early on in pvns treatment. We know from the stats on malignant tumors the area that the radiation actually dose hits will sterilize the cells so they can't reproduce, but then again treatment is only as good as the mapping and dosage which is not only a science but an art. Radiation does not come without it's own risks and consequences. 

In my case I over healed and had to be knocked out again for a manipulation to break up the adhesions. It now feels like there is a tight band around my knee and it stiffens easily. In all fairness you can get the same thing from just having an open synovectomy like I had, so I'm not sure how I would feel if I didn't have radiation. Radiation also increases recovery time, for me it was 6 weeks before I had my normal energy level and it did add onto physical therapy time. The tab for my RT was $26,000 thank goodness for insurance but I still had copays.

The surgeon and I again discussed that it was a right decision to get RT in my case since it was diffuse throughout my knee combined with my past medical history. They removed all pvns that showed in the mri and all that was visible, but it's impossible to get out the microscopic cells. Unfortunately it looks like there are now new areas of pvns. She isn't convinced that it is pvns on the tendons and if it is the only thing that they could do is graft a new tendon into the knee which would cause more problems then the pvns at this stage. Another new area that it is showing is almost into the muscle which it won't damage the joint. There are other areas that are probably pvns and time will tell. My joint is still good but in my case it looks like the pvns may acting very very aggressive.  So yes RT was a wise decision in my case. My next mri is in 3 months. Hind site is 20/20. The dice could have just as easily rolled the opposite way and I would never know if I caused unnecessary damage to my knee. Everything is a roll of the dice when making treatment decisions about pvns. Remember certain effects from radiation and chemo can not be reversed.

Update: 08/2014 I'm now approaching three years of being PVNS Free. 


(During 12/14/2012 surgery discovered pvns had not recurred and the mri was showing scar tissue)

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.