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.

PVNS Doctor Appointment Tips

Tips to make your doctors appointment fast and efficient

Here are some ways to help ensure you utilize your time efficiently, accomplish your goals and receive the best medical care possible.

Making Your Appointment:

1. When making your appointment confirm that the office takes your insurance.
2. Ask how much time is reserved for a new patient appointment and also follow up appointments. If you have multiple problems  to discuss at a routine visit let the scheduler know not to double book during your appointment time.
3. Be accurate as to why you need to see the doctor. Otherwise the appropriate time may not be reserved or the necessary equipment to evaluate you may not be available.
4. It greatly increases your chances of being seen on time if you ask for the first appointment in the morning or the first appointment after lunch. This way you are not waiting for the physician to finish with other patients.
5. Complete new patient forms before appointment. Ask if the office has a website were the forms may be printed out. If not ask for them to fax or mail the forms to you. This way you will have access to all the information needed to fill them out completely and you won't be wasting your appointment time filling them out. Hand these forms to the receptionist when you sign in so she may add them to your chart.
6. Make a prioritized list of goals and questions prior to appointment and make a copy for the physician. This allows both of you to focus on your concerns and not forget anything that is pertinent. Try to limit your goals to three main issue so there is time to  evaluate, fully discuss and come up with solutions. If you have more then three main issues it may require another appointment.
7. Keep a health journal - Track your medications, supplements, diet changes, symptoms, illnesses, etc. could help your doctor when he or she is trying to investigate your health or prescribe medications.
8. For new patients: One week prior to your new patient appointment sign a "release of medical records form" a the new office for each doctor that they need to obtain records from. This gives your new doctor a chance to review your case prior to your appointment. Two days prior to your appointment confirm that the new office has received your medical records.

Items To Bring To Your Appointment:

1. Bring completed new patient forms or any forms that you may need to be filled out.
2. Bring medication bottles, creams, misc. to the apointment. Many people are unable to remember the actual medication names, dosages and instructions or the physician that prescribed them.
3. Bring your prioritized list of goals and questions with extra space to write notes and a copy for your physician.
4. Bring a recording device if you prefer to record your visit instead of taking notes.
5. Bring your health journal.
6. Bring test, biopsy, MRI, Xray, lab reports ordered by other physicians if you have them.
7. Bring a friend- Doctors provide a lot of information quickly. It is easy to forget what is said.

Checking Into Your Appointment:

1. Before you leave for an appointment, call to find out if the doctor is running late, or ask the minute you walk in the door. If you are over 15 minutes late the doctor may not be able to see you.
2. When checking in have your insurance card with you and ready to present. You are responsible to know your benefits. If your card has not arrived then get your insurance information before the appointment.
3. If you need forms to be completed, present them at check in so the staff can start to fill them out. It is your job to bring the forms that you need filled out such as workman's comp, disability, etc. There may be an extra charge for the form unless it was the entire reason for your visit. 
4. If you have long forms to be completed by the doctor the staff will give you an estimate of cost and time required to complete. 
5. If you think you may need to have a urinalysis done ask the receptionist if the doctor has requested one. this saves you time by having the results processed before being seen by the doctor. If the doctor has to wait for the results he will see another patient and then return to you. thus causing you to wait for the doctor twice.
6. Pay your copay and schedule your follow-up appointment if applicable while in the waiting room. This will save you time after your appointment.

During Your Appointment:

1. Remember the doctor only has about 8 minutes to assess you needs, examine and provide treatment.
2. Provide the doctor with a copy of your prioritized list of issues and questions.
3. You may ask the doctor if he minds if you record your discussion vs taking notes.
4. Be clear about what you want the doctor to do, such as refer you to a specialist, prescribe a different medication or go over test results. 
5. Be honest about what you think may be causing the problem and don't be embarrassed. Your doctor has seen and heard it all before.
6. Ask the doctor to repeat anything that you don't understand.

Proper Medical Office Etiquette:

1. Talking with the doctor about unrelated issues such as family, pets, latest drama is very expensive and makes other patients wait longer. It is a waste of your appointment time and takes away from the time that the doctor has to focus on your medical issues.
2. Most doctors only have approximately 8 minutes of actual time that they can spend with you. The rest of their time is tied up in administrative duties related to researching, writing scripts, ordering tests and charting.
3. If you are a family member or friend accompanying the patient, do not "steal the spotlight" by asking questions about yourself.
4. Don't ask to have your other child checked out.
5. Don't talk on the cell phone in the waiting or exam room. It is very annoying to others
6. Treat the receptionist, medical assistants and nurses as an extension of the doctor.
7. Every member of the office is committed to providing you with the best care.

These Are The Average Time Goals Of a General Medical Office:

Step                                                                                Time Spent

Patient arrives and checks in: 1  minute

Receptionist verifies insurance and collects copays: 4  minutes

Patient wait in waiting room: 13 minutes

Patient is taken to exam room, vitals and intake are done: 5 minutes

Patient waits in exam room: 7 minutes

Physician examines and treats patient, charts, scripts: 8 minutes

Patient checks out: 3 minutes

Total Cycle Time:  41 minutes

Total time spent waiting: 20 minutes

Total time spent with nurse and or physician: 13 minutes

Total time spent with office administrative duties: 8 minutes