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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.

13 comments:

  1. I have PVNS in both of my shoulders. How come there is no information on here or hardly anywhere describing it there? I know it's rare but there are a few of us out there. I've had my bilateral synovectomies and am being treated with 20 mg methotrexate weekly to hopefully keep it from coming back but would love to hear from someone out there that is going what I'm going through and see if they are having the same treatment. It's a guessing game it seems.

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  2. Bebe, I appreciate your input and you make a good point. The reason that you don't see reference to shoulder pvns on here is because of it's rarity, and I haven't found the studies to link to. However, I will make some calls and take a more concerted effort to find out more information about it. Thank you again for your input.

    I'm sorry that you have had such a rough time with this dreaded disease. I understand the need to converse with others with the same type of pvns that you have and your best bet in finding a shoulder pvns specific person will be on the pvns is pants site. Sheila Piner from that site has the data on who has what the of pvns and may be able to hook you up. :-)

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  3. CJ thank you writing. I read your blog here and there, and it is always a joy to see you plow through this. I agree that knowledge is power! You mentioned that you make some calls. Do you have connections who are big in the field of PVNS? I am a researcher myself with my master's in public health this stuff fascinates me. In case you need a reference I am willing to help.

    Bebe, I can speak to you about my post-op shoulder surgery now. I do not know why you are on methotrexate but please do shoot me another message on facebook. Let us hang in there!

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  4. Jacqueline, thanks for your reply. I have physicians (some that are involved with research studies) that I'm able to present questions to but I don't know what would constitute being big in the field of pvns. I would love to find a physician or health scientist that makes pvns their life work but I don't think I will because quite frankly pvns effects too few people.

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  5. Check on Dr. Gregory Brick @ Brigham and Womens Hospital in Boston. He has literaly done hundreds of open anterior/posterior synovectomies. I wish I had seen him prior to the 6 arthroscopies I had previously. Dr. Brick has demonstrated you have to prestage with MRI prior to any PVNS synovectomie.

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    1. Thank you for the input. I will definitely put him on my list of docs to contact. The mris are essential in helping to approximate the extent and distribution of pvns but they are only as good as the radiologist reading them.

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  6. Hi CJ! I agree that learning that you have to undergo another surgery immediately just after you had your first is bad news, and quite terrifying especially while you just started recovering. But I do hope that your patella Femoral Resurfacing procedure goes well.

    Sienna Christie

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  7. Thank you for your reply. I'm just getting ready to write a post and update everyone on how the resurfacing went but I will tell you I couldn't be happier with the results.

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  8. Hi, My name is Joyce Schaffer RN. I work in clinical trials in Scottsdale, AZ. We have a very promising drug that has had remarkable results for individuals with PVNS. Can you help me get the word out? You can read more about the trial at: http://1.usa.gov/1agoeYh My number is 480-323-1339 and my email address is joschaffer@shc.org. I would be happy to answer any questions. Thank you for your time!
    Joyce

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  10. Thank you. I'm now going on 4 years of being PVNS Free and will be adding and updating info the beginning of next year.

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