I have come to the conclusion that I break out in shingles on the back of the knee that has the PVNS whenever I wear something that I had worn when I had a previous case of shingles. Shingles suck.
I had been wearing a pull up ace wrap when the inflammation caused too much pain. I went out dancing and 2 days of anguish ensued. I pulled out the trusty old wrap and pulled it up to swaddle my knee. However, the very next day a very itchy rash appeared. If you touch your first finger to your thumb, about that size.
With shingles there is no releif. I can't put a bandaid over it. So I found a new wrap and put a large piece of gauze smothered in anti-bacterial zinc ointment over it. And then I went on vacation. I wore long dresses to cover the unsightlyness of the bandage that now covered an area just below my knee. Total bummer.
Then I took my daughter to a chiropractor who used Kinetic Tape on her sprained back. I thought immediately this could be my fix so that I don't place things on the back of my knee because maybe it's the rubber in the wrap that caused the shingles. Who knows? Anything to avoid another occurrence of shingles is preferred.
Once I learned about this new tape I've seen it everywhere. Well maybe not everywhere but definitely in sporting goods stores. So I bought myself a roll of it and keep it handy in case my knee gets those terrible sharp pains. I haven't actually used it yet but I'm really excited about it.
Thank you to the inventor of this awesome tape. You may have just saved me from another outbreak of those darn shingles.
Tuesday, April 19, 2016
Thursday, March 17, 2016
I had an appointment to make another appiontment
Today I saw the open surgery doctor guy who confirmed again that he will not be the guy to cut me open next. I was there for the MRI results that I have been anticipating for over a year. The results:
1. MRI findings most compatible with pigmented villonodular synovitis of the right knee with a small erosion at the posterior aspect of the lateral femoral codyle. Interval development of the new PVNS deposit at the superior aspect of Hoffa's fat pad since prior exam.
2. Moderate knee joint effusion.
3. Chondromalacia patella.
After Dr. D read this to me he explained, "But don't worry about that."
He also added that because none of the PVNS has broken through past the synovial lining that he wouldn't have to operate on me. I said, "Good, I don't ever want to see you again. At least not anytime soon." He agreed. But we looked at each other as though we knew this would not be the last encounter.
He kept saying, "Is there anything else I can do for you?", emphasizing the "else". I was wondering if he wanted me to ask for drugs or something. I don't know. What can he do?
He told me he would refer me to the team that does the kind of surgery I need. I was elated to be spending my time for an hour of my day to wait in a room to be told what I knew that I was going to hear. "You need to see someone else, you will be called in a few days". Oh yay.
Basically my prognosis boils down to having diffused PVNS in my right knee. It is still growing. It is causing inflamation and the slow destruction of my knee. And now I get to wait some more.
1. MRI findings most compatible with pigmented villonodular synovitis of the right knee with a small erosion at the posterior aspect of the lateral femoral codyle. Interval development of the new PVNS deposit at the superior aspect of Hoffa's fat pad since prior exam.
2. Moderate knee joint effusion.
3. Chondromalacia patella.
After Dr. D read this to me he explained, "But don't worry about that."
He also added that because none of the PVNS has broken through past the synovial lining that he wouldn't have to operate on me. I said, "Good, I don't ever want to see you again. At least not anytime soon." He agreed. But we looked at each other as though we knew this would not be the last encounter.
He kept saying, "Is there anything else I can do for you?", emphasizing the "else". I was wondering if he wanted me to ask for drugs or something. I don't know. What can he do?
He told me he would refer me to the team that does the kind of surgery I need. I was elated to be spending my time for an hour of my day to wait in a room to be told what I knew that I was going to hear. "You need to see someone else, you will be called in a few days". Oh yay.
Basically my prognosis boils down to having diffused PVNS in my right knee. It is still growing. It is causing inflamation and the slow destruction of my knee. And now I get to wait some more.
Thursday, February 11, 2016
I found a surgeon!
I finally got to see the surgeon today!
After waiting for about 5 months to get through the insurance referral system I was there. I felt as giddy as a freshman on their first day of college.
The location of the doctors office was in close proximity to my home. I like to see doctors as close to my home as possible but that's not always reasonable. Besides, the University of Washington has the best medical program the city of Seattle has to offer. Their office feels like a spa rather than another doctors office. The staff was friendly. And the visit went very quickly.
UW is a teaching hospital so there is always a "team" of people around. Each medical staff seems to be equipped with an assistant. I was ok with that. I was immediately given a referral for an MRI which I will have next month.
Dr D said he only performs major surgeries and I only need a key-hole arthroscopy. He has just the person to send me to. And, he acknowledges that PVNS is far more prevalent than the silly 1.8 in 1 million outdated statistic.
I've got my MRI scheduled for next month which is the next step. Dr D said he does not do keyhole arthroscopy but he refers people "all of the time" to someone else on his team. Only when you have PVNS do you get excited about surgery.
After waiting for about 5 months to get through the insurance referral system I was there. I felt as giddy as a freshman on their first day of college.
The location of the doctors office was in close proximity to my home. I like to see doctors as close to my home as possible but that's not always reasonable. Besides, the University of Washington has the best medical program the city of Seattle has to offer. Their office feels like a spa rather than another doctors office. The staff was friendly. And the visit went very quickly.
UW is a teaching hospital so there is always a "team" of people around. Each medical staff seems to be equipped with an assistant. I was ok with that. I was immediately given a referral for an MRI which I will have next month.
Dr D said he only performs major surgeries and I only need a key-hole arthroscopy. He has just the person to send me to. And, he acknowledges that PVNS is far more prevalent than the silly 1.8 in 1 million outdated statistic.
I've got my MRI scheduled for next month which is the next step. Dr D said he does not do keyhole arthroscopy but he refers people "all of the time" to someone else on his team. Only when you have PVNS do you get excited about surgery.
Wednesday, January 20, 2016
Maybe I will get surgery this year
It's been 5 months since I started the process of getting surgery to remove the PVNS that is currently growing in my right knee.
I found a new doctor right away when my family doctor retired in August. I explained to the new doctor that I need him to refer me to an out of network doctor but I won't even know who unless I can magically pull one out of the sky. He Googled one and found a guy who might be able to do the job. He popped up first under "PVNS surgeon". Only getting the referral through the authorization process of my insurance was like watching a cat play with a toy mouse. I found going to the doctors office and talking to people in person was a great start. I got results faster that way. I was given the specific name and number to call the insurance person to explain why it is important that I get my referral authorized sooner than later. But getting that woman to call me back has been futile. I found it to be more effective to keep going back to the doctors office and telling the referral coordinator that I was going nowhere. She got on top of it and sent the approved referral to the right doctor in December of 2015.
I didn't hear anything and tried calling the primary doctors office but their automated phone system makes me want to pull my hair out. So I went back down to the doctors office and explained to the referral coordinator that I still hadn't heard anything. She said to call the surgeons office direct and make an appointment because the referral had been sent.
I called 3 weeks into January. Guess what? Well, besides the phone number she gave me not working, the surgeons office said they never got the referral. I went back down to the primary doctors office and told the referral coordinator that I'm still stuck in referral limbo land. She said she would take care of it. I called the very next day to make my appointment, they still didn't have the referral! The surgeons office said that I should just keep calling back daily. I seem to think work can get done within 2 days.
I just got off the phone with the surgeons office and the 3rd person I have talked to there said that it can actually take up to 48 hours for the referral to be uploaded so I need to call back again tomorrow.
... Continued. I waited 2 more days and called again. The surgeons office said they see that the referral was sent to the wrong fax and it wasn't in their office. I called my primary doctors office and told the referral coordinator that the last 2 fax numbers she tried were incorrect and provided her with the correct one.
I seriously feel like I have to do other peoples jobs. I'm trying to maintain being polite about it.
I found a new doctor right away when my family doctor retired in August. I explained to the new doctor that I need him to refer me to an out of network doctor but I won't even know who unless I can magically pull one out of the sky. He Googled one and found a guy who might be able to do the job. He popped up first under "PVNS surgeon". Only getting the referral through the authorization process of my insurance was like watching a cat play with a toy mouse. I found going to the doctors office and talking to people in person was a great start. I got results faster that way. I was given the specific name and number to call the insurance person to explain why it is important that I get my referral authorized sooner than later. But getting that woman to call me back has been futile. I found it to be more effective to keep going back to the doctors office and telling the referral coordinator that I was going nowhere. She got on top of it and sent the approved referral to the right doctor in December of 2015.
I didn't hear anything and tried calling the primary doctors office but their automated phone system makes me want to pull my hair out. So I went back down to the doctors office and explained to the referral coordinator that I still hadn't heard anything. She said to call the surgeons office direct and make an appointment because the referral had been sent.
I called 3 weeks into January. Guess what? Well, besides the phone number she gave me not working, the surgeons office said they never got the referral. I went back down to the primary doctors office and told the referral coordinator that I'm still stuck in referral limbo land. She said she would take care of it. I called the very next day to make my appointment, they still didn't have the referral! The surgeons office said that I should just keep calling back daily. I seem to think work can get done within 2 days.
I just got off the phone with the surgeons office and the 3rd person I have talked to there said that it can actually take up to 48 hours for the referral to be uploaded so I need to call back again tomorrow.
... Continued. I waited 2 more days and called again. The surgeons office said they see that the referral was sent to the wrong fax and it wasn't in their office. I called my primary doctors office and told the referral coordinator that the last 2 fax numbers she tried were incorrect and provided her with the correct one.
I seriously feel like I have to do other peoples jobs. I'm trying to maintain being polite about it.
Monday, December 14, 2015
Can I get a referral please? PLEASE!
I don't know why I have to feel like I need to be pleasant when I am so frustrated with the lack of response. Here's the story. My last surgery was not good. I had a time limit given which seemed odd, the surgeon didn't tell me anything about my condition, and he didn't even show me images of the MRI or anything. He left me confused but at least I could walk again. Fast forward to now. I can feel the tumor growing back. I still don't know if I had localized or diffused or both. The surgeon never bothered to tell me. We agreed he doesn't need to do the next surgery. Neither of us are interested in working together. I started shopping for other surgeons.
Along the way, my family doctor who has to orchestrate the referral process retired. I got a new doctor a few months ago and filled him in on my plan to find another surgeon. We searched Google and found one that might be able to perform the surgery I need. I got a referral in the mail but it was for the first surgeon who performed the first surgery. I called the doctors office and asked for the correct referral. I got one for a doctor that is 40 miles away and it was not the doctor we found on Google. I called the doctors office back to ask why I still haven't received a referral for the surgeon that my new doctor found on Google. I left a message. I left another message a few days later. Finally I went to the clinic because nobody was returning my calls.
The doctors office informed me that they were limited to their "in network" surgeons and that I would need to exhaust all options before I could get a referral to an "out of network" surgeon. They have 33 surgeons in their network. Most of who are over 30 miles away from my home. The clinic explained that I would need to call the insurance company to get an approval from them to go outside of the network. So I called and the one person I need to speak to was out of the office for a few days. I asked to leave a message for her to call me back. A week passed and no call was returned. Not sure why it's so difficult for people to return calls. I called again today and left yet another message. Won't be able to go to their office to demand service so now I'm stuck waiting more. Meanwhile I'm having issues walking and eventually will need to have another surgery. Hopefully sooner than later. But with waiting for people to call me back, it seems to be later than I would like.
Along the way, my family doctor who has to orchestrate the referral process retired. I got a new doctor a few months ago and filled him in on my plan to find another surgeon. We searched Google and found one that might be able to perform the surgery I need. I got a referral in the mail but it was for the first surgeon who performed the first surgery. I called the doctors office and asked for the correct referral. I got one for a doctor that is 40 miles away and it was not the doctor we found on Google. I called the doctors office back to ask why I still haven't received a referral for the surgeon that my new doctor found on Google. I left a message. I left another message a few days later. Finally I went to the clinic because nobody was returning my calls.
The doctors office informed me that they were limited to their "in network" surgeons and that I would need to exhaust all options before I could get a referral to an "out of network" surgeon. They have 33 surgeons in their network. Most of who are over 30 miles away from my home. The clinic explained that I would need to call the insurance company to get an approval from them to go outside of the network. So I called and the one person I need to speak to was out of the office for a few days. I asked to leave a message for her to call me back. A week passed and no call was returned. Not sure why it's so difficult for people to return calls. I called again today and left yet another message. Won't be able to go to their office to demand service so now I'm stuck waiting more. Meanwhile I'm having issues walking and eventually will need to have another surgery. Hopefully sooner than later. But with waiting for people to call me back, it seems to be later than I would like.
Sunday, November 29, 2015
Pain Management
I'm horrified that doctors continue to prescribe awful pain medications like oxycontin, oxycodone, vicotin and any other derivative of heroin. Even after your surgery is long over. Yes, those are all pretty much heroin. Legal heroin. If you have addict genes in your family, you should stop taking those 2 weeks after surgery. Otherwise you could find yourself on the streets doing things you thought you would never do while leaving your family and your life behind. I am not kidding.
Of course people would like to have an alternative to dangerous highly addictive drugs to help manage the pain. Unless you crave those drugs. Then, please find an alternative method immediately as you are probably already an addict or an unsuspecting addict. Those drugs just numb or hide the pain. They don't rid your body of the pain. I won't go into an entire scientific explanation about how pain and the brain work. But this post is about finding alternatives for managing pain. I have found what works for me seems to also work for others that I have suggested they try these alternatives. I could be repeating myself but it bears repeating. Try these:
Ice
Arnica Montana
Asperin
Ibuprophen (for swelling)
Tumeric (also for swelling)
Castor Oil Packs with a heating pad for 30 mintutes
Acupuncture
Now some people say Epsom salts help while others say they make the pain worse.
So I say, try them. It won't hurt to try. Ok, maybe the hot bath with Epsom salts could.
But all are worth trying. And these don't have to just be remedies for PVNS. These have helped for broken bones in my family. And they are all safer than the heroin varieties.
Another suggestion is to not just get the good old doctors opinion. Look for alternative healthcare practitioners. People like naturopaths, nutritionists, acupuncturists, and especially Chinese herbalists. They seem to have magic herbs in China. Some of the herbs I have taken are quite remarkable.
If you know of any pain management methods or practitioners that are not "western medical doctors" then please share your experiences in the comments below for others to read. I think this topic is very important.
Of course people would like to have an alternative to dangerous highly addictive drugs to help manage the pain. Unless you crave those drugs. Then, please find an alternative method immediately as you are probably already an addict or an unsuspecting addict. Those drugs just numb or hide the pain. They don't rid your body of the pain. I won't go into an entire scientific explanation about how pain and the brain work. But this post is about finding alternatives for managing pain. I have found what works for me seems to also work for others that I have suggested they try these alternatives. I could be repeating myself but it bears repeating. Try these:
Ice
Arnica Montana
Asperin
Ibuprophen (for swelling)
Tumeric (also for swelling)
Castor Oil Packs with a heating pad for 30 mintutes
Acupuncture
Now some people say Epsom salts help while others say they make the pain worse.
So I say, try them. It won't hurt to try. Ok, maybe the hot bath with Epsom salts could.
But all are worth trying. And these don't have to just be remedies for PVNS. These have helped for broken bones in my family. And they are all safer than the heroin varieties.
Another suggestion is to not just get the good old doctors opinion. Look for alternative healthcare practitioners. People like naturopaths, nutritionists, acupuncturists, and especially Chinese herbalists. They seem to have magic herbs in China. Some of the herbs I have taken are quite remarkable.
If you know of any pain management methods or practitioners that are not "western medical doctors" then please share your experiences in the comments below for others to read. I think this topic is very important.
Monday, October 26, 2015
The American Health System is the equivalent of Alice having tea with the Mad Hatter
My family doctor retired. That was a tragedy. Nobody knew my struggles as well as my doctor and more importantly, his staff. His front desk staff was epic in getting the correct paperwork to where it needed to go and in short time. Now that he is gone and nobody stepped up to take on his patient load, we all scattered into the wind. I found a doctor who was new to his practice, I quickly made an appointment and filled him into my situation. I announced that I needed a surgeon that knows how to perform surgery on PVNS that will do it willingly and not be a complete renegade about it. Getting a simple answer is not such a simple process. Just to ask a surgeon, "can you remove PVNS from my knee?" I have to go see my doctor, get a referral to a surgeon, go see the surgeon, ask the surgeon the question, and usually get told "no". Then back to square one and onto the next surgeon on the list. I get to go through this process over and over with no end in sight. This is because PVNS is still so unknown that not many surgeons have performed surgery on it and therefore I will not allow myself to trust a surgeon who has no idea what they are dealing with. I'm not looking to be an experimental subject.
Another doctor said they could call around for me so I had an appointment and explained my entire PVNS story only to get an email that a referral would be sent to the surgeon of my choice. That's not exactly what I had in mind so I had to go back to the new guy. The problem is that over 3 weeks ago I was supposed to go through this referral process with a surgeon that my new doctor found on google search. Only, the referral that came in the mail was for the first surgeon I saw who told me he would send me to someone who would "cut me up good". No thanks creepy surgeon guy. So I asked the referral to be fixed. Another week went by and I called to get an update, I was left on hold. I called back and asked for my call to be returned. Since I didn't get a response, I called again last week and again asked for another message be left for the referral clerk to call me back. Since another week went by without a response, I went to the office and demanded to get an answer. I told them I was going to rant but I just need to have communication. They told me there were even more hoops to jump through before I could even start going through "out of network" referrals to surgeons of my choice. They showed me a name I never saw before. So my choices are to go see the mystery doctor or to call the insurance company and see if I can get someone track down a surgeon for me. If that is possible. Or I beg them to let me find a doctor who knows what they are doing.
So I'm feeling very upset about the lack of communication, the inability to feel that I can trust the staff of my new doctor, the system in general, and the fact that I still have no idea who can remove the tumors that keep growing in my knee. I'm pretty sure that I'm stressing out over all of this nonsense and causing even more health problems.
Another doctor said they could call around for me so I had an appointment and explained my entire PVNS story only to get an email that a referral would be sent to the surgeon of my choice. That's not exactly what I had in mind so I had to go back to the new guy. The problem is that over 3 weeks ago I was supposed to go through this referral process with a surgeon that my new doctor found on google search. Only, the referral that came in the mail was for the first surgeon I saw who told me he would send me to someone who would "cut me up good". No thanks creepy surgeon guy. So I asked the referral to be fixed. Another week went by and I called to get an update, I was left on hold. I called back and asked for my call to be returned. Since I didn't get a response, I called again last week and again asked for another message be left for the referral clerk to call me back. Since another week went by without a response, I went to the office and demanded to get an answer. I told them I was going to rant but I just need to have communication. They told me there were even more hoops to jump through before I could even start going through "out of network" referrals to surgeons of my choice. They showed me a name I never saw before. So my choices are to go see the mystery doctor or to call the insurance company and see if I can get someone track down a surgeon for me. If that is possible. Or I beg them to let me find a doctor who knows what they are doing.
So I'm feeling very upset about the lack of communication, the inability to feel that I can trust the staff of my new doctor, the system in general, and the fact that I still have no idea who can remove the tumors that keep growing in my knee. I'm pretty sure that I'm stressing out over all of this nonsense and causing even more health problems.
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