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Have PVNS and a genetic blood defect, a Perfect Storm

Posted , 4 users are following.

OConnor
OConnor

Anybody out there like me? After 15 years of knee pains and 3 ortho doctors who did little to inform me or help, a hemorrhage in the knee while in an MRI machine finally got me the results I needed to define my problem. PVNS causes bleeding, is not curable, is progressive and if one also has a genetic bleeding defect, then Heaven help you. When my knee swells, my whole leg is involved, it becomes one stiff, huge, severely painful limb that cannot be put down on the ground, much less stand on it.  The doctors always say in the USA to rate pain from one to 10 with 10 being crying. Well, my pain is crying, hysterics, screams to bystanders to help me quick as the swelling all happens in literally less than 2 minutes.  any of you who have had an active hemorrhage in a knee joint can agree. It is off the charts, cannot be measured.

I have enjoyed reading all these posts as I have felt so alone and distrustful of doctors who have shut doors on me when I ask questions that they cannot answer. At this point I have been told only that when I have these gigantic swellings, I can make an appointment on Monday or Wednesday or Friday to see a Physician's Assistant to try draining it and then a cortisone shot. In this country, they usually say you can only get 3 shots in the same joint, or the cortisone will be counterproductive. Well, I have had 2 already and feel I will never time my "event" to fit the schedule of the busy medical center in my valley. In short, they are done with me.

My kindly internist who knows me best has seen to it that I have  prednisone and pain pills on hand to use when needed and my hematologist has given me Transexamic Acid pills to slow bleeding when needed. It seems that my bleeding disorder is also very rare and is characterized by my forming a clot, reluctantly, then the clot will disolve and it bleeds again. I carry these meds along in a sack with my heavy knee brace and medical literature should I be caught on the streets without my husband when it hits and I have to convince someone what my problem is because I will need their help immediately. This is like an albatross around my neck, a constant reminder of my disability.  And I dare not look too far ahead into the future because I so much want to remain mobile and independent.

It has helped me to read these forums, but it also causes me to fear the future so much as I hear all of your pain line by line and inbetween the lines. Please continue writing as you are my only contact with the reality that I live with ....and you too.  I am quite old, but i have people to see, places to go, things to do, and I am not finished with life. You can all help me with your comments.

OConnor

 

1 like, 14 replies

14 Replies

  • moandrieu
    moandrieu OConnor

    Posted

    OConnor, that sure is a difficult pill to swallow. What country are you in? I have a friend in the USA who says she has been getting shots for a number of years, definitely more than three times in a particular joint. She's just undergone her second Total Knee Replacement, so she won't need those shots any more, but she does get them in her shoulder and either neck or back. I do know that some say there is a limit to what you can have. Maybe my friend is an exception.

    • OConnor
      OConnor moandrieu

      Posted

      I'm in southern California and have heard various advice from doctors re: cortisone shots. The first 2 I had worked for exactly 14 days and that was when the PVNS had not even been diagnosed, so I don't know where I would stand now with a 3rd shot.  Having the PVNS more advanced now and the doctors I had seen not agreeing on treatment, I guess the decision to continue shots will be mine alone. I will consider all advice given to me by those of you with experience with this miserable disorder. I value your imput.  Thank you.

  • Oldfatguy1
    Oldfatguy1 OConnor

    Posted

    Where are you located?

    I too have pvns but mine affected me a little differently. I was 65 and a few months away from retiring and was making a donor call one day. At noon my knee was fine and I was sitting at a high table on a bar stool. At 3 I started to get up and the pain of which you speak ripped through me when I started to get up. When I got back to my office I could hardly get out of the car. I used my cell phone to call the company nurse and have hi me bring me a pair of crutches then went on home. By that time the pain had worsened and I got out of the car but couldn't get up the 2 steps and had wait for my wife to get home to get me ice so I could numb they let and get in the house. Then to ER. They had to finally put me out 3 times and take out 200 c.c of blood, use a needle 6 times and take out 65 to 75 c.c each time. Then came radiation, synovectomy and finally tkr. 9 years later the PVNS had eaten the bone and the stem of the prosthesis broke loose, turning and hitting nerves each time it moved. The revision showed the tumor and also the fact there was a little of it in a bundle of nerves that can't be removed. I've had 5 more surgeries on the l÷g due to abroken fenmur and staph. As far as moving around in the body, not necessarily.......1r years and its stayed in the same joint.

    I go to a medical school at major university and have a young assoc professor that has treated close to 3 dozen cases and I am one of the oldest. The synovectomy was done by a orthopedic oncologist and she Obviousily , as the title indicates, does some really nasty cancerous bone cancer. These are the people you need on your side. I truly understand the pain, confusion and frustration that goes with the disease. I am now close to 80 and fight pain every day all day. If you aren't getting the medical support you need, look elsewhere.

    Stay in touch. BTW.....I am in the Kansas City metro area an go to the University of Kansas medical school. My Dr would be happy to fill me in on a specialist near you if he should know anyone.

    Best of luck

    • Irish_Al
      Irish_Al Oldfatguy1

      Posted

      Hi OFG,

      You are a good person. I don't know you but admire you. You are so helpful taking time to respond to people whether they have mild issues or extreme issues. Thank You.

      I am a distance from Kansas bur if you are ever in Ireland you are welcome in my home.

      Thank You, Take care, God Bless,

      Alan

    • Oldfatguy1
      Oldfatguy1 Irish_Al

      Posted

      Thanks so much for your sincere kindness. Ireland would be one of those dream trips I would have loved to take. When we were in Switzerland a few years ago we discussed going to Ireland but d's iced we need to get home. Now with my wife's advanced Parkinson's disease we barely get out of town. Like I tell people.....if it weren't for Dr's appointments we wouldn't have a social life.

      Thanks again.

    • OConnor
      OConnor Oldfatguy1

      Posted

      I'm in southern California and took previous advice to try to find an orthopedist oncologist , but couldn't locate one anywhere near that met my driving limits. I agree that an oncologist type doctor might be the best choice, as from what I read, PVNS used to be considered a kind of cancer, but was taken off that label because it did not metastasize.  This is not logical to me. If the tissue could be killed where it grows, why not use chemo?  But then I am just beginning my research to help myself. I appreciate your review of your problem and I can see that you do know the level of pain I have had 5 times already with these severe swellings. I can hardly tolerate an acquaintance who tells me of her arthritis aches and asks me if I want some of her Aleve.  I start to explain and then stop. With this bleeding disorder, i am warned off of all NSAIDS. And have to focus carefully on my use of other pain meds with a careful accounting system to show my doctor who prescribed them.

      I do so appreciate all of the time you take to respond to others in need. I see that you have helped them tremendously. If your doctor should know of any Ortho guy who indeed is familiar with PVNS and related disorders, I would appreciate knowing.  As the day draws near that I will have to do some kind of surgery to be able to walk, I need to have a doctor to turn to.  For now, I rejoice in finding this site and knowing that I am not alone. Now 80 years old, but having had a healthy adulthood for the most part, it is hard to wrap my head around the idea of being disabled temporarily and maybe someday permanently. Well.....together , we go forth.

    • Oldfatguy1
      Oldfatguy1 OConnor

      Posted

      Understand the drive time situation in your area. I have in laws plus a son in the bay and central valley of CA. I'd hate to think I had to drive and bed in the kind of pain you're experiencing. You might go on line with UCLA, USC & Stanford medical schools and see if they know of any of this with PVNS experience close by your area. I know they have ortho oncologists on board in their facilities as i looked them up years ago.

    • OConnor
      OConnor Oldfatguy1

      Posted

      Good point to ponder. Had one experience with USC in downtown LA on behalf of my husband who was investigating deep brain stimulation. Bars on all the windows in that neighborhood, plus guards every ten feet in the underground parking garages made me uneasy to say the least.  But we lived for decades in the Bay Area and we know the Stanford U. area very well.  I could try to find a good doctor there to line up for the time I would need surgery maybe. At least one relative is there and that would make it a good choice.  Again, I appreciate your suggestions.
    • Oldfatguy1
      Oldfatguy1 OConnor

      Posted

      ?......why were you looking at DBS? We go to a Parkinson's symposium every couple of years ( my wife is in advanced stages of Parkinson's disease. DBS not an option for her but they always have an expert do a session. The university of Kansas has one of the leading neurologists specializing in the disease and they put it on. ) They generally have 1200-1500 in attendance.

      Our nephew did both undergrad and residency (internal medicine) at Stanford. My sister and brother in law live in Menlo park 10 mins from the campus. I would trust them as much as anyone. They did a cyberknife brain sugery on my wife's great niece 4 years ago removing a normally fatal brain cancer. At that time they had one of the 2 pieces of equipment like that in the country.

    • OConnor
      OConnor Oldfatguy1

      Posted

      Yes, I think that Stanford Hospital and Medical School are excellent.  Saved my life once.  My husband has a pretty advanced essential tremor, benign and familial, but a total negative factor in his life. He wanted to learn about DBS which still frightens me, but we'll see if our research brings us closer to a decision. I need to see if Stanford also offers that surgery. We lived for 30 years in Saratoga and my husbnad also worked at Stanford U. for a long time.  We are comfortable there except for the traffic jams and fast pace of life.  Small world, isn't it?

    • Oldfatguy1
      Oldfatguy1 OConnor

      Posted

      My cousins neighbor was in such bad shape he couldn't get on his feet by himself. He ha DBS and now walks 1-2 miles daily. Another lady , much younger, was wheel chair bound pre surgery and post op is driving, do house work and being active with the family. Of course it isn't foolproof but what is. St. Luke's hospital in Kansas City no has a proceedure that can be done under sedation. You might go on line with them and see what they are doing.

  • Irish_Al
    Irish_Al OConnor

    Posted

    Hi OConnor,

    I cannot relate to your level of pain. I can only say a prayer for you and wish you better health.

    Re cortisone, a few years ago I had several corisone injections in my heel. One day when 'trying to help' in the kitchen I tripped over my wifes foot (It WAS an accident!!!) and snapped my achilles tendon, surgeons said the root cause was too much cortisone.

    All is OK now, but that is my only experience of cortisone.

    Best wishes and Take care,

    Alan

    • OConnor
      OConnor Irish_Al

      Posted

      I have absorbed your advice about cortisone and will not take additional shots without more validation that they are not just a short termed solution, but a longer term problem.  And you may not believe this, but last night, I had the best sleep of my last 2 years, almost totallly painfree.  I awoke to read of your prayer for me and I want you to know....by golly...I think it worked!!  Many thanks!!
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