Disclaimer

The information on the Blog Posts reflects my opinions, personal suggestions and is not intended as medical advise. The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained on or available through this web site is for general information purposes only. PVNS Success makes no representation and assumes no responsibility for the accuracy of information contained on or available through this web site, and such information is subject to change without notice. You are encouraged to confirm any information obtained from or through this web site with other sources, and review all information regarding any medical condition or treatment with your physician.

PVNS Success does not recommend, endorse or make any representation about the efficacy, appropriateness or suitability of any specific tests, products, procedures, treatments, services, opinions, health care providers or other information that may be contained on or available through this web site.

PVNS Success is not responsible nor liable for any advice, course of treatment, diagnosis or any other information, service or products the you obtain through this web site.


NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE OR DELAY SEEKING MEDICAL TREATMENT BECAUSE OF SOMETHING YOU HAVE READ ON OR ACCESSED THROUGH THIS WEB SITE.



Friday, January 18, 2013

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.

Thursday, January 10, 2013

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.

Wednesday, January 9, 2013

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.