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Showing posts with label pvns first surgeon appointment. Show all posts
Showing posts with label pvns first surgeon appointment. Show all posts

Friday, August 24, 2012

PVNS Questions to Ask Your Doctor


Questions to Ask at  your PVND Doctors Appointment:

  • What type of experience do you have with PVNS? diffuse, nodular, open/arthro, clinical trials
  • What type of PVNS do I have? diffuse, nodular, mixed, intra-articular, extra-articular
  • When will biopsy be taken, how long for the results and will surgery be done at that time? 
  • How has this disease affected my joint? what damage is the mri showing if any?
  • What are my treatment choices and which is the best treatment for this type of PVNS?
  • Do you prefer open vs arthroscopic surgery and why? How many have you done? Outcomes?
  • Will I be given a nerve block along with general anesthesia?
  • Do you use staples or sutures to close the incision and why?
  • Knee joint: will a continuous passive movement machine be available after surgery? 
  • How long will I be in the hospital?
  • What will I be given for pain management?
  • When will I begin physical therapy and for how long?
  • Will I need crutches or any other equipment after surgery?
  • When will I be able to return to work and normal activities?
  • What are the risks of delaying or opting out of surgery?
  • What will your long term follow up plan for monitoring the PVNS be? Check ups/MRIs
  • Are there any complementary or alternative therapies that I should consider? radiation internal/external, chemo, cryotherapy, homeopathic?
  • What are the risks and possible side effects of each treatment including long term effects?
  • Are there any clinical trials that would be appropriate for me?
  • Do you recommend any herbs or other supplements- such as fish oil or glucosamine?
  • What should I do if my symptom worsen?
  • What can I do to decrease the discomfort?
  • What can I do to preserve my joint?
  • What kind of out-of pocket expenses can I expect; are payment plans available?

Tuesday, December 6, 2011

Appointment with Surgeon Episode 1, Part 2


My head is spinning and I'm so stressed about making the right decision. I'm fortunate that my surgeon is familiar with PVNS, however, as she put it there aren't any clear cut answers as far as over treating or under treating because everyone is so different. 

I have diffuse PVNS in my knee and already have a significant amount of arthritis. I'm scheduled for surgery next Wednesday and have some big decisions to make. 
This will be the first and hopefully the last surgery.  Dr. D will begin surgery arthroscopically...take a frozen section for biopsy.


If confirmed to be PVNS the surgeon needs to know beforehand how aggressively I want to her to treat it. Continue with the arthroscope or revert to an open synovectomy. Post surgery she will have me speak with an oncologist radiologist. 
Dr. D looked over my chest ct with me. She just said “no, don’t go there. It would be so incredibly rare for it to show up in your lungs.” What ever is in my lungs grew in the last month and is now involving the lymph nodes in the mediastium... they will take another ct of the lungs in 3 months. I’m still trying to get authorization from insurance for my thoracic and lumbar spine MRI to help them figure out why I have so much back/flank pain. Hopefully not PVNS.  
When a person starts aging they require more tests to make sure your healthy enough to survive surgery. Personally I think all of the tests are to cover the anesthesiologists butt. It would be cheaper for him to just wear depends in case I scare the piss out of him instead of me paying several hundred dollars to have tests repeated within the 30 day criteria window. 

Oh well, going to my primary care doc tomorrow to obtain a health clearance. I haven’t been healthy for a longtime and the PVNS was just a side trip on the way to finding out what’s causing me to feel so ill and cause so much pain.
I’m going to use distraction and refocussing now and go make some cut out Christmas cookies. 

Saturday, December 3, 2011

Questions to ask the Doctor


From: CSL Cartoon Stock

I saw the brainy doctor yesterday....as her staff describes her. Actually her biography is absolutely amazing and that is why I chose to interview her. Yes, I interviewed her to see if I wanted to hire her to be my physician. Just because a surgeon is willing to take your case doesn't mean that they are the best doctor for you in the long run. There are many things that you must consider.

What distance are you willing to travel and how often. If traveling a long distance... after surgery when would you be able to comfortably return home and who would you follow up with. I'm learning quickly that it takes a team to manage this disease. A primary care who coordinates all aspects of your care, a surgeon, radiation oncologist and a physical therapist. Your life may depend on how well you get along with your doctor and the staff.

Story Time:
A few years ago I was admitted to the hospital with septicemia. My internist had another physician covering him on that day. Long story short, the physician on call ordered an antibiotic and after it was running into my IV for about an hour, I started to get itchy and that feeling  of impending doom overwhelmed my body.  I've had allergic reactions before and notified my nurse of my symptoms and concern that I may be starting an allergic reaction. She called the doctor who said that I could have some Benedryl but insisted that the antibiotic continue to run until he could see me in the morning. I took the Benedryl and tried to relax. A few minutes later the itchiness had increased with very slight difficulty breathing but now it felt like adrenaline was pouring into my system. I asked the nurse to turn off the IV antibiotic and to call the doctor...she said, she couldn't turn off the IV but would call the doctor. 

After speaking with the doctor again she informed me that the antibiotic had to continue to run until the doctor could see me in the morning. By this time I was having more apprehension, itchiness and slightly more difficulty breathing. I ended up turning off the IV and said "I can't tolerate any more of this antibiotic and it needs to be changed. He isn't listening and I'm not going to let him kill me." Soon afterwards the doctor came into my room and I told him that I couldn't have any more of this specific type of antibiotic because of my symptoms and fear of going into anaphalaxis if I continue. He said in a very angry tone "If you don't let us restart that IV right now I'm discharging you to home and you'll be dead in a few hours.  After the statement that you made to the nurse about me trying to kill you...do you think I care whether you live or die? Do whatever you want because I honestly don't care."

Feeling very ill, alone, completely worn down, in tears and against every instinct, I foolishly consented for the IV to be turned back on. Within a few moments I was having great difficulty breathing, hives were emerging and my hands were blue. I frantically rang for the nurse multiple times, she never responded. I turned off the IV again and as I took my last gasping breaths I hit the code button on the wall and fell to the floor unconscious. In a nutshell, I awoke in the ICU after a severe anaphalactic reaction, very ill with septicemia and now a chest that felt like someone took a bat to it. I almost died that night because of personality conflicts and I was too ill to fight with the doctor... even though I knew restarting the IV could have deadly consequences. Yes, he was fired from my internists practice and the nurse was put on report. 

This was a very highly skill physician who I had seen in the office previously and knew he didn't like me and I didn't like him. It was just some type of negative chemistry and my instincts told me to stay away from him, but he was just there as backup for my physician. It's important to listen to your gut feeling and make sure that you trust and like your physician and the others in his office. I have dealt with many physicians and compatible personality trumps skill any day. Of course there needs to be a balance.

Don't underestimate the financial aspect of health care....can you afford to be treated by a specific doctor.

Questions to ask during your doctors appointment:
  • What type of experience do you have with PVNS?
  • What type of PVNS do I have?
  • Is a biopsy required to make a definitive diagnosis? When will the biopsy be taken and how long for results?
  • How has this disease affected my joint?
  • Can it affect other parts of my body?
  • What are my treatment choices and which is the best treatment for this type of PVNS?
  • What are the risks and possible side effects of each treatment and long term effects?
  • Will I need surgery or will I need it in the future?
  • What are the risks of delaying or opting out of surgery?
  • Are there any complementary or alternative therapies that I should consider? internal or external radiation
  • Do any clinical trials or research support these alternative therapies?
  • Are there any clinical trials that would be appropriate for me?
  • Do you recommend any herbs or other supplements- such as fish oil or glucosamine?
  • What should I do if my symptom worsen?
  • Is there medication that I can take on an as-needed basis to decrease the discomfort?
  • Would exercising make my condition worse or would it help it?
  • What can I do to preserve my joint?
  • About how much would surgery cost?
  • What kind of out-of pocket cost can I expect?
  • How often will I need checkups?
  • Will I need physical therapy after surgery, when will it begin and for how long?
  • How painful is each type of surgery and when would I be able to return to normal activities?