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.

1. Maheshwari A, Muro-Cacho C, Pitcher D. Pigmented villonodular bursitis/diffuse giant cell tumor of the pes anserine bursa: a report of two cases and review of the literature. Knee 14:402–407, 2007. 
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.
4. Sekiya H, Ozawa H, Sugimoto N, Kariya Y, Hoshino Y. Pigmented villonodular synovitis of the elbow in a 6-year-old girl: a case report. J Orthop Surg (HongKong) 15(1):106–108, 2007.
5. Mukhopadhyay K, Smith M, Hughes PM. Multifocal PVNS in a child–followed over 25 years. Skeletal Radiol 35:539–542, 2006.
6. Tavangar SM, Ghafouri M. Multifocal pigmented villonodular synovitis in a child. Singapore Med J 46(4):193–195, 2005. 
7. Cussotti S, Ingrosso G, Parola PG, Mellano D, Linari A, Pucci A, Di Rosa G. Tendinous villonodular synovitis: a rare case of recurrence during childhood. Chir Organi Mov 89(2):167–170, 2004.
8. Saulsbury FT. Pigmented villonodular synovitis of the knee in a 9-year-old child. South Med J 97(1):80–82, 2004.
9. Eckhardt BP, Hernandez RJ. Pigmented villonodular synovitis: MR imaging in pediatric patients. Pediatr Radiol 12:943–947, 2004.
10. Aydingoz V, Leblebicioglu G, Gedikoglu G, Atay O. Pigmented villonodular synovitis of the elbow in a 6-year old girl. J Shoulder Elbow Surg 11(3):274–277, 2002.
11. Pill SG, Adams SB, Hubbard AM, Carpentieri DF, Dormans JP. Soft tissue mass of the second toe in an 11-year-old boy. Clin Orthop Relat Res 401:265–270, 2002.
12. Bruecks AK, Macaulay RJ, Tong KA, Goplen G. Nov 2000: 13 year old girl with back pain and leg weakness. Brain Pathol 2:263–264, 2001.
13. Rosenberg D, Kohler R, Chau E, Bouvier R, Pouillaude JM, David L. Pigmented villonodular synovitis. Diffuse and localized forms in children. Arch Pediatr 8 (4):381–384, 2001.
14. Kaneko K, Nakahar D, Tobe M, Iwase H, Inoue Y, Ohbayashi O, Kurosawa H. Pigmented villonodular synovitis of the ankle in an adolescent. Int Orthop 23:234–237, 2000.
15. Vedantam R, Strecker WB, Schoenecker PL, Salinas-Madrigal L. Polyarticular pigmented villonodular synovitis in a child. Clin Orthop Relat Res 348:208–211, 1998.
16. Ganley TJ, De Ruiter CJ, Dormans JP, Meyer JS, Collins MH. Ankle pain and swelling in a 10-year-old girl. Clin Orthop Relat Res (348):282–284þ287–289, 1998.
17. Hansen P, Nielson PT, Wahlin AB. Pigmented villonodular synovitis of the extensor tendon sheaths in a child. J Hand Surg Br 13(3):313–314, 1998.
18. Hoeffel JC, Mainard L, Champigneulle J, Claudon M. Pigmented villonodular synovitis of the wrist in childhood. Clin Pediatr (Phila) 36(7):423–426, 1997.
19. Minisola G, Porzio V, Ceralli F, Grillo LR, Porzio F. Polyarticular pigmented villonodular synovitis associated with multiple congenital anomalies: a case of noonan-like/ multiple giant cell lesion syndrome. Clin Exp Rheumatol 14(2):207– 210, 1996.
20. Kay RM, Eckardt JJ, Mirra JM. Multifocal pigmented villonodular synovitis in a child: a case report. Clin Orthop Relat Res 322:194–197, 1996.
21. Meehan PL, Deftari T. Pigmented villonodular synovitis presenting as a popliteal cyst in a child. J Bone Joint Surg Am 76(4):593–595, 1994.
22. Kang GH, Chi JG, Choi IH. Pigmented villonodular synovitis in the sacral joint with extensive bone destruction in a child. Pediatr Pathol 12:725–730, 1992.
23. Soifer T, Guirguis S, Vigorita VJ, Bryk E. Pigmented villonodular synovitis in a child. J Pediatr Surg 28(2):1597–1600, 1993.
24. Curtin WA, Lahoti OP, Fogarty EE, Dowling FE, Regan BF. Pigmented villonodular synovitis arising from the sheath of the extensor hallucis longus in an eight-month-old infant. Clin Orthop Relat Res 292:282–284, 1993.
25. Bruns J, Schubert T, Eggers-Stroeder G. Pigmented villonodular synovitis in children. Arch Orthop Trauma Surg 112(3):148–151, 1993.
26. Green A, Sutherland W, Trafton PG. Localized nodular synovitis of the ankle: a case report. Foot Ankle 12(1):47–51, 1991. 
27. Givon U, Granel A, Heim M. Pigmented villonodular synovitis. Arch Dis Child 66:1449–1450, 1991. 
28. Matejicek M, Dungle, Trnka V, Havelka S, Hoza J. Multiocular pigmented villo- nodular synovitis in a child: a case report. Acta Universitatis Medica 37(1-2):31–36, 1991.
29. Aghasi MK, Robinson D, Reif RM, Halperin N. Pigmented villonodular synovitis of the talus in a child. Foot Ankle 9(3):139–142, 1988. 
30. Wendt RG, Wolfe F, McQueen D. Polyarticular pigmented villonodular synovitis in children: Evidence for a genetic contribution. J Rheumatol 13(5):921–926, 1986. 
31. Walls JP, Nogi J. Multifocal pigmented villonodular synovitis in a child. J Pediatr Orthop 5:229–231, 1985.
32. Wagner ML, Spjut HJ, Dutton RV. Polyarticular pigmented villonodular synovitis. AJR 136(4):821–823, 1981.
33. Lindenbaum BL, Hunt T. An unusual presentation of pigmented villonodular synovitis. Clin Orthop Relat Res 122:263–267, 1977.
34. Leszczynski J, Huckell JR, Percy JS, LeRiche JC, Lentle BC. Pigmented villonodular synovitis in multiple joints: occurrence in a child with cavernous haemangioma of hip and pulmonary stenosis. Ann Rheum Dis 34:269–272, 1975.
35. Bobechko WP, Kostuik JP. Childhood villonodular synovitis. Can J Surg 11:480–486, 1968

What I Would Have Done Differently with PVNS

The following question was asked in the pvns is pants site "Open synovectomy or TKR?"

If I Had only Known 

I was newly diagnosed with diffuse pigmented villonodular synovitis of the knee, in November of 2011. The game plan for removal of the tumor was to begin with arthroscopic surgery to confirm the pvns via intra operative biopsy. the tumor was extensiveness so my orthopedic oncologist surgeon reverted to an open synovectomy. this procedure gave me the best chance of a cure. 

Per mri I wouldn’t need a knee replacement for several years if at all. Looking back, I feel that the surgeon must have known when doing the synovectomy, that I would be left with severe arthritis. I don’t believe the discovery that I needed a knee replacement was a surprise to the surgeon in December when she performed an arthroscope for possible pvns recurrence (which turned out to be scar tissue) and meniscus repair.

Prior to open knee surgery, this is where I wish that I had discussed knee replacement in the event that the synovectomy would leave me with little to no cartilage. If it had been determined that I would be left with severe arthritis, I would have had them fix the meniscus, excise the pvns that they could with the arthroscopic procedure and close me up. I still would have done radiation but then I would have had the open synovectomy and the knee replacement done as soon as I was healed. 

This strategy would have save me from needing a manipulation 4-5 mo post op/starting me all over in the healing process.  It also would have saved me from an additional arthroscopic surgery to fix the meniscus. Not to mention the financial hardship of being  off work for over a year due to severe pain and the inability to do my job.

With all of the said I had a partial knee replacement two weeks ago and for the first time in over a year I am not taking narcotics or anything else for pain.  Note; with a minimally invasive knee replacement,  they don’t cut through the quad muscle like with a traditional tkr and open synovectomy. This cuts down on discomfort and increased rehab time. 

TKR is not a cure for pvns although it does seem to show that it may decrease the recurrence rate. Again there are risks no matter what you choose. I found that the open synovectomy was by far a much longer, more difficult and painful recovery than the arthroscopy and the partial replacement. I would never choose an open syno knowing that I would shortly need a TKR. When I was in rehab from my open syno I was very slow in my recovery compared to the people who had TKR. There are many peeps on this site that have had TKR and could direct you better than myself. Best of luck and well wishes. 

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, Hospitals Are Not Created Equal, TKR or Partial

MRI Bad News

Energy drained and my heart plummeted when I read my 6 month follow-up mri report "new areas consistent with pvns, lateral meniscus tear, new medial meniscus tear, and tendinopathy." After an open synovectomy, months of physical therapy, radiation treatment and surgery to break up adhesions... I was exhausted and couldn't bear the thought of more surgery. However, that is exactly what I needed to do because the pain had become debilitating.

Not My Usual Hospital

Fortunately, I was able to schedule an arthroscopic procedure with the same surgeon exactly one year to the date of my first pvns surgery. This time I had to have surgery in a different hospital and I wasn't comfortable with my surroundings. This particular hospital had the look and feel of an inner city hospital on the wrong side of town...if you know what I mean. My admittance to the presurgical area seemed to be rushed even though it was thorough, which made me feel uncomfortable. However, my confidence in the hospital continued to diminish  when the nurse couldn't get an IV started and began freaking out about it. The upside to this is that my IV was started in the surgical suite and the block was given after I was already unconscious. I didn't realize at the time that having the block administered after I was asleep increases my chances for possible nerve damage. Fortunately I was fine but would have liked to have known. 

Recovery

In recovery I was given morphine and my arm turned red and itchy. Not a true allergy, only a sensitivity so I was given benedryl. Within 5 minutes I was asked if I was ready to sit in a chair. "well I guess so." So they transferred me to stage two. 

While in stage 2 recovery my husband notified me that there was good and bad news. "Bad news?" Nope I don't want to here any bad news. "I'll take the good news first." Thankfully, the suspected recurrence of pvns turned out to be scar tissue. Finally, I catch a break with this dreaded disease. Then "the hammer" shatters my good fortune. In a hesitant voice my husband informs me that I need a knee replacement and they could do it in about 6 weeks. Yikes! More surgery is not what you want to here when you are just waking up from a surgery.

My groggy head was still trying to comprehend the news... when after only being in stage 2 recovery for five minutes I was asked if I was ready to go home. Being drugged, uncomfortable in my surroundings, questioning the qualifications of the nursing staff, home seemed like the safest alternative.  The nurse handed my husband some papers and asked if she needed to call transportation or if I could walk. I'm barely conscious, just had knee surgery...what the heck. 

On the way home, I realize the nurse never gave any verbal instructions and I didn't have a clue as to what I needed to do for follow up. Folks this is not what you want to experience from a hospital stay. Thankfully it was just an outpatient procedure but this is why it's important to check out the hospital and make sure you are comfortable with it.

It has taken me a couple weeks to wrap my head around needing a knee replacement. I'm only 48 and the thought of a total knee replacement is terrifying. I figure knowledge is power, right? So I went on utube and watched several TKR videos and was cringing the entire time. 

Appointment With New Surgeon

Now that I had desensitized myself to the idea of a knee replacement, I made an appointment with my surgeon to ask her some questions. After a couple more weeks and much research I finally saw my surgeon. Long story short she feels that I may be a good candidate for a uni-compartmental replacement/resurfacing which is a fancy description of a partial replacement. So I make an appointment with an orthopedic surgeon who specializes in this technique and waited 2 more weeks which just gave me more time to do additional research on partial replacements. Well, what I was finding in the literature was not promising and quite frankly discouraging for the long term success of this technique.

Finally the day has come to get some questions answered from my possible new knee replacement surgeon. I was equipped with a list a questions fueled with the ability to test the surgeons personality, preparation, skill and experience. All of these traits and aspects are very important to me. I was impressed and it's not easy to impress me. He prepared for my appointment, thoroughly knew my case, and had already read all of the reports prior to my arrival. The only thing that he needed to see was the photos that were taken of my knee at the time of my last surgery...which I brought with me.  He thoroughly in a non rushed manner answered every last question. 

He presented a couple of different options. #1 He could put plugs of cartilage in my knee, do a Patello Femoral Resurfacing, or go back to my pvns surgeon for a total replacement. As we discussed what role the pvns could play in the different choices we both agreed that cartilage transplant probably would not be the best way to go. I told him of my aprehension of a partial replacement due to the recent studies. He informed me the studies reflected the old hardware and patient selection guidelines. The problem have been identified and they corrected the design flaws in the hardware and the short term reviews are wonderful but obviously there aren't any long term studies yet. 

He is confident that the resurfacing (partial replacement) would buy me some time and that it would be a better choice instead of a full replacement since the damage was confined to the patello femoral area. In a couple of weeks, I'll be having a resurfacing, in other words a partial knee replacement.  I also learn about many other procedures and forthcoming bio joint replacements. Yup, they have grown new joints for animals. The links are in the side bar of the home page. Immediately after this appointment I went across the street and checked out the hospital to see if I felt comfortable, talk with workers and pick up information about the hospital.

Update Two Years Post Partial Replacement


I'm happy to say that I'm approaching three years of being PVNS free and the Partial knee replacement was an outstanding success...for a year. I chose the partial because the only area in my knee that was showing arthritis was in the central area. I'm not sure why, but it only took one year and now the lateral and medial aspects of the knee are showing severe arthritis. I'm not sure whether the having previous pvns or the radiation therapy has played a role in the accelerate of cartilage destruction or not. My instinct says that it's been a factor. If I'm correct, than I wouldn't suggest having a partial knee replacement, because in the relatively near future, I will need my partial knee revised to a full replacement. Which is a nauseating thought. 

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, Is Profit A Driving Force Behind Clinical Trials?

Many of us who have pvns are desperate to find any treatment modalities that may offer us a chance at irradiating this flesh eating monster from our joints. In doing so we must be very careful and ask many questions before participating in clinical trials. I thank everyone who has participated in a clinical trial and I'm neither for or against any given treatment option. With that being said I am very concerned... What Happens when Profit Margins drive Clinical Research? Check out this article to find out. http://www.motherjones.com/environment/2010/09/clinical-trials-contact-research-organizations

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.

Finding A Balance With PVNS Pain Management

The pain management for PVNS can be difficult. I see a pain management specialist but not for the pvns. If you have chronic long term severe pain issues that physical therapy and healthy living is not able to get under control, then pain management may be for you. They have many modalities of treatment available such as injections, blocks, and non narcotic medications which help many people. 

I have a pain pump inserted in my abdomen which requires very expensive maintenance every 3 months and if something goes wrong with it or insurance,  I can die. I take oral narcotics for break through pain but I am not pain free and never will be. I have learned that staying mentally healthy and moderate activity is the best way to decrease the pain. If I just pop a pill when I hurt they cease to have any effect. In the meanwhile the higher the narcotic dose the more your brain function declines. 

In the end most pain management patients understand there is a fine line in balancing medication, pain, brain function, activity, physical and mental health, biofeedback, self hypnosis, acupuncture techniques...in order to live a healthy happy productive life. The people that go into pain management and solely depend upon medication to control pain become medication dependent with very poor pain control. So if you feel pain management is for you ask you primary care physician for a referral and schedule a consultation to inform you of what is available to help control 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.

Were You Recently Diagnosed With PVNS?

PVNS is a Marathon Not a Sprint

It's helpful to understand that pvns is not a race in which you sprint, but a marathon that takes time, proper information, pacing and preparation in order to successfully reach the finish line with grace. PVNS is not a trip to the grocery store, but a family vacation in a foreign country with an undesirable passenger along for the ride. In car terms pvns is not a drag race but an Indy 500 which takes endurance.  

If you were told that you had to run a marathon tomorrow...that would freak you out pretty bad, right?  Well, being diagnosed with pvns elicits similar feelings. So the feelings that you are experiencing now are completely normal and healthy. I know it sucks, but just go with it.  

Not Cancer But...

I always hate when people say "it could be worse." "like this isn't bad enough? WTF." Sure I'm glad that it's not cancer that is going to kill me, but like cancer it has a voracious appetite and I can just envision it eating away at my joint like a Pac Man in a race.  Just when you think it has had it's fill...it starts eating away like a crazed bulimic again. How do we tame this monster? Take a deep breath and realize that you are going to learn how to control this beast by educating yourself and fighting back with knowledge. 

Informed Decisions

Making informed decisions in your treatment and long term care will give you the weapons to fight and prevent the pvns from sinking it's elongated villinous claws into your throbbing joint. Most feel overwhelmed and frightened as to how the pvns is going to effect their finances, lifestyle, family dynamics and socialization. This is understandable since your not so friendly carjacker is trying to gain control of the vehicle, but remember it's your life  and you can fight to regain control. Hopefully, you will be one of the fortunate people that will be able to kick this beast out of your car and tow him behind in a trailer and semi-forget about him. Understand that you will be driving your vehicle at times and at other times you will be an unwilling passenger.  However, it is up to you to design the road map in which you are going to travel. Learning to anticipate and plan for the possible potholes, financial cliffs and rugged terrain. This planning will make for a much more enjoyable trip. I didn’t want to take on this passenger/carjacker either but fortunately, most are in a country where they have access to some of the best medical care in the world and I am very thankful for that. 

Once again, pvns is not a sprinting race but a marathon that takes time, education, proper pacing and preparation in order to successfully guide your way gracefully to the finish line.

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.