Wednesday, December 18, 2019
PVNS Eventually Goes Away?
What? Did you read that right? PVNS just goes away eventually? On it's own? Without surgery? The word I have heard recently from others who suffer from PVNS that they have been told it's possible. Medical professionals that once diagnosed that there is a peak time for PVNS to "live" but then eventually it stops growing and is no longer an issue. This is news to me after suffering for well over a decade. I have had 3 surgeries since being diagnosed 6 years ago and I feel that it's time for another surgery soon. I have heard other people talk about their many surgeries, joint replacements, and even amputation. If there was any chance that PVNS "going away" on it's own I would think people would not go to the extreme of amputation or even choose to have repetitive surgeries. This is the first year I have ever heard of this concept. I have heard of people getting surgery and it going essentially dormant for a while but then coming back later after several years. I would not assume anything anyone says in the medical profession is 100% correct. An interesting concept but I will say this about PVNS, it is different for everyone.
Tuesday, September 10, 2019
Expiremental Surgery
The surgeon who performed my last 2 arthroscopic surgeries works out of a hospital that is connected to The University of Washington's medical education program. The benefit of going to these doctors is that they not only work with the best instructors but can also try new things with the patients permission.
The last surgery, my surgeon mentioned that he was concerned that I have the kind of PVNS that will keep coming back since it's diffused. He wanted to try a cartarizing synovectomy. The way he described it was that he would be using a tiny blow torch to burn the interior of my knee. The swelling was a challenge and took a little longer to recover but not by much.
I have now been a year and a half post surgery and although I do feel some signs of it's return, it's not causing any significant pain or impediment to my abilities and has so far been a success.
I have continued to pursue yoga and can do most poses. I still can't fully bend my right knee to where I can sit in a kneeling position with sitting back on my ankles but I can do a childs pose quite well. I'm assuming it's an inflammation issue and it could be a little PVNS in there causing my ability to bend my knee to be restricted.
The last surgery, my surgeon mentioned that he was concerned that I have the kind of PVNS that will keep coming back since it's diffused. He wanted to try a cartarizing synovectomy. The way he described it was that he would be using a tiny blow torch to burn the interior of my knee. The swelling was a challenge and took a little longer to recover but not by much.
I have now been a year and a half post surgery and although I do feel some signs of it's return, it's not causing any significant pain or impediment to my abilities and has so far been a success.
I have continued to pursue yoga and can do most poses. I still can't fully bend my right knee to where I can sit in a kneeling position with sitting back on my ankles but I can do a childs pose quite well. I'm assuming it's an inflammation issue and it could be a little PVNS in there causing my ability to bend my knee to be restricted.
Monday, July 1, 2019
Embracing Abilities
I always say the worst part of recovery from surgery, any surgery, is the feeling of helplessness at some point soon after. It may be the overwhelming daily pain that is taxing to your mental fitness or it's the realization that you can no longer do "normal" activities.
Each surgery has been easier to recover from mentally because I know what to expect and I know what my limits are. I learned to embrace what I can do and let go of what I can't.
When my knee really started to deteriorate, the simplest of actions would cause my knee to swell like crazy. Especially if I worked any muscles near the knee too extensively. Just mowing the lawn on a hillside would be all it would take to blow my knee up like a balloon which would take weeks to get the swelling to go back down. So no more mowing lawns for me. At least not on the hill side. No more running. No more rigorous hiking. (I can still hike, but just for limited distances.)
However, I can ride a bike for quite a long time without pain or discomfort. I can swim for long periods of time. I don't actually swim laps. I swim in motions that I know will work that knee but won't cause it to react in a terrible way.
Doing squats or lunges can be dangerous unless I'm holding on to some kind of support. But I tend to stay away from those. I also have very long legs so when I go to a yoga class I am often reprimanded for not spreading my legs wide enough or bending my knee far enough. So I have learned not to attend yoga classes. Instead I do my yoga sessions at home, at my pace, in my way so that I can avoid the criticism. It's not like I'm going to approach the instructor at the beginning of a class to tell them to step off my lack of knee bending. But I do find yoga practice before and after a surgery helps the healing process go by a lot faster.
I have learned to embrace the things I can do and appreciate that I can still walk. I am not in pain. I can do just about anything I want. And I'm not bothered that I can't do the things I once was able to do.
Each surgery has been easier to recover from mentally because I know what to expect and I know what my limits are. I learned to embrace what I can do and let go of what I can't.
When my knee really started to deteriorate, the simplest of actions would cause my knee to swell like crazy. Especially if I worked any muscles near the knee too extensively. Just mowing the lawn on a hillside would be all it would take to blow my knee up like a balloon which would take weeks to get the swelling to go back down. So no more mowing lawns for me. At least not on the hill side. No more running. No more rigorous hiking. (I can still hike, but just for limited distances.)
However, I can ride a bike for quite a long time without pain or discomfort. I can swim for long periods of time. I don't actually swim laps. I swim in motions that I know will work that knee but won't cause it to react in a terrible way.
Doing squats or lunges can be dangerous unless I'm holding on to some kind of support. But I tend to stay away from those. I also have very long legs so when I go to a yoga class I am often reprimanded for not spreading my legs wide enough or bending my knee far enough. So I have learned not to attend yoga classes. Instead I do my yoga sessions at home, at my pace, in my way so that I can avoid the criticism. It's not like I'm going to approach the instructor at the beginning of a class to tell them to step off my lack of knee bending. But I do find yoga practice before and after a surgery helps the healing process go by a lot faster.
I have learned to embrace the things I can do and appreciate that I can still walk. I am not in pain. I can do just about anything I want. And I'm not bothered that I can't do the things I once was able to do.
Saturday, June 1, 2019
Dear Doctor
Since losing my insurance coverage I now stand to pay out of pocket expenses directly for my medical care. In America, medical costs can be crushing since the medical industry isn't regulated on how much they can drive up those costs. I have started looking abroad at where I can get an arthroscopic surgery for a typical clean out of the PVNS that accumulates through an arthroscopic procedure. Knowing that they won't get it all and I will be back at some point for another surgery and another. I need to find a place where my costs will be lower, including the stay for recovery, and the airfare to get there.
If I want to see my preferred doctor, my insurance costs would be over $700 a month just for the coverage. That doesn't include co-payments or the difference between what the insurance will cover such as the MRI's and surgery itself that may only have a portion covered. If I choose to continue with this coverage I can't even afford, I'm looking at $10,000 minimum just to see the doctor of my choice. Sure I could get the $500 a month coverage and see the doctor I don't want, but that's still too much for too little.
Recently I saw a conversation online about the idea of medical travel. I was thinking India perhaps but a few people were mentioning Singapore. With great interest I started searching for places I could stay, how much it would cost, and who would be the surgeon. I found a website where a surgeon in Singapore said he is familiar with PVNS and has a handful of cases each year. I reached out to him and explained my situation and what I am ultimately looking for. Mainly, a relationship with a surgeon abroad that I can trust to get the surgery of my choice.
When the response came back from the doctor, it was not the response I was expecting. He suggested I start looking at the very treatments that I refuse to get. Radiation and clinical trial medications.
I don't need a doctor to tell me what they think. I need a doctor to do what I want them to do. I have learned to be my own best advocate and do what's best for me.
The search goes on.
If I want to see my preferred doctor, my insurance costs would be over $700 a month just for the coverage. That doesn't include co-payments or the difference between what the insurance will cover such as the MRI's and surgery itself that may only have a portion covered. If I choose to continue with this coverage I can't even afford, I'm looking at $10,000 minimum just to see the doctor of my choice. Sure I could get the $500 a month coverage and see the doctor I don't want, but that's still too much for too little.
Recently I saw a conversation online about the idea of medical travel. I was thinking India perhaps but a few people were mentioning Singapore. With great interest I started searching for places I could stay, how much it would cost, and who would be the surgeon. I found a website where a surgeon in Singapore said he is familiar with PVNS and has a handful of cases each year. I reached out to him and explained my situation and what I am ultimately looking for. Mainly, a relationship with a surgeon abroad that I can trust to get the surgery of my choice.
When the response came back from the doctor, it was not the response I was expecting. He suggested I start looking at the very treatments that I refuse to get. Radiation and clinical trial medications.
I don't need a doctor to tell me what they think. I need a doctor to do what I want them to do. I have learned to be my own best advocate and do what's best for me.
The search goes on.
Tuesday, May 7, 2019
Do it now!
Since being diagnosed 6 years ago I have learned that at my worst with my PVNS I'm still better off than I could be. It can always get worse. That idea alone motivates me to waste no time. To do the things that I wouldn't otherwise if I was in it bad with my PVNS. Things that most people take for granted. Walking a flight of stairs, walking a long distance, sitting for a long period of time, or any kind of traveling.
I had my last surgery a year and one month ago. So far I am doing great. I have moments when I think I'm having a recurrence but since my last surgery I have incorporated going to the gym 3 to 5 days a week where I ride a stationary bicycle for 25 minutes. I average about 5 miles or so. Or I go swim but I prefer the bicycle to keep the knee moving steadily and consistently. About 8 months ago I added in a five minute yoga stretch before the gym time. But now I'm up to 20 minutes of yoga before the gym. I do the yoga at home where I won't have an instructor shouting at me to bend my knee while I'm trying to breathe. I found an app that I use that has videos that I can choose the length of time as well as the level of difficulty. The yoga has become such an vital part of my day that I genuinely get anxious if I don't start my day with my yoga practice.
Last year I started booking vacations when I knew I could still walk around easily and without pain. I knew that if I didn't go on these trips I could suffer for future travels if I waited too long. Surgeries have been such a big part of planning that if I'm not planning a surgery I am planning a vacation. Through my travels, and even my surgeries, I have learned to be grateful for my mobility and abilities and work to accomplish all that I can while I can.
My fear is if I don't travel or keep moving I will become unable to do so. So I do everything I can for myself everyday. And I'm in the best shape of my life because of this mentality. And for that I'm actually thankful for my PVNS.
I had my last surgery a year and one month ago. So far I am doing great. I have moments when I think I'm having a recurrence but since my last surgery I have incorporated going to the gym 3 to 5 days a week where I ride a stationary bicycle for 25 minutes. I average about 5 miles or so. Or I go swim but I prefer the bicycle to keep the knee moving steadily and consistently. About 8 months ago I added in a five minute yoga stretch before the gym time. But now I'm up to 20 minutes of yoga before the gym. I do the yoga at home where I won't have an instructor shouting at me to bend my knee while I'm trying to breathe. I found an app that I use that has videos that I can choose the length of time as well as the level of difficulty. The yoga has become such an vital part of my day that I genuinely get anxious if I don't start my day with my yoga practice.
Last year I started booking vacations when I knew I could still walk around easily and without pain. I knew that if I didn't go on these trips I could suffer for future travels if I waited too long. Surgeries have been such a big part of planning that if I'm not planning a surgery I am planning a vacation. Through my travels, and even my surgeries, I have learned to be grateful for my mobility and abilities and work to accomplish all that I can while I can.
My fear is if I don't travel or keep moving I will become unable to do so. So I do everything I can for myself everyday. And I'm in the best shape of my life because of this mentality. And for that I'm actually thankful for my PVNS.
Sunday, March 3, 2019
You Are Your Best Advocate
I hear many horror stories about people getting surgery and getting treated terribly. Some people going into surgery hear the list of things that are going to happen to them as they are getting prepped without being told before or doctors getting agitated at questions. Really? Agitated over questions?
My first surgery happened when I was 7. A mesiodense removal. I knew what was going to happen but when I woke up from the anesthesia I started crying. A nurse came over and told me to stop. That was the most memorable part of the surgery, being scolded for feeling scared. In fact that also triggers a memory of being 2. Yes, 2 years old. I had contracted encephalitis and I had to hold a heavy lead plate and I didn't want the nurse to let go of it. It seemed heavy and that if she let go it might sever my legs. That is what my 2 year old brain was thinking. So I started crying. She got mad and told me to "stop crying!". It's the way these women barked "stop crying" at me without any kind of empathy from them. I was scared! And rather than comfort me, they were bullying me. And that is what I remember from my medical history as a child. Now I won't have people treat me poorly when I'm paying top dollar and going under a knife.
In fact after my first PVNS synovectomy I was so disappointed by the lack of bedside manner from my surgeon I spent a year interviewing other surgeons who were familiar with PVNS until I found the one I was comfortable with.
I don't think people realize that they still get to be in control of their own health and that whatever doctors tell them is purely advice and not a command. Even when I had to have surgery to remove a substantial part of my thyroid the surgeon said it was still optional. But I had a cyst on my thyroid that was growing, choking me in my sleep, and giving me sleep paralysis. No thanks doc, I'm opting for the knife. But I was still happy that he reminded me that surgery is still always my choice.
Unless my leg has exploded and I'm in ER and the doctor is saying they have to amputate to save my life. Ok, I might buy that. But for anyone who has ever felt uneasy about how their doctor or even the nursing staff is behaving, you as the patient have every right to demand someone else treat you or just refuse to work with the person who is making you feel uncomfortable. There is nothing worse than having added stress when you are dealing with surgery. I believe stress actually slows down the recovery process. So if any medical staff are causing stress, they need to be put out of my care team.
My first surgery happened when I was 7. A mesiodense removal. I knew what was going to happen but when I woke up from the anesthesia I started crying. A nurse came over and told me to stop. That was the most memorable part of the surgery, being scolded for feeling scared. In fact that also triggers a memory of being 2. Yes, 2 years old. I had contracted encephalitis and I had to hold a heavy lead plate and I didn't want the nurse to let go of it. It seemed heavy and that if she let go it might sever my legs. That is what my 2 year old brain was thinking. So I started crying. She got mad and told me to "stop crying!". It's the way these women barked "stop crying" at me without any kind of empathy from them. I was scared! And rather than comfort me, they were bullying me. And that is what I remember from my medical history as a child. Now I won't have people treat me poorly when I'm paying top dollar and going under a knife.
In fact after my first PVNS synovectomy I was so disappointed by the lack of bedside manner from my surgeon I spent a year interviewing other surgeons who were familiar with PVNS until I found the one I was comfortable with.
I don't think people realize that they still get to be in control of their own health and that whatever doctors tell them is purely advice and not a command. Even when I had to have surgery to remove a substantial part of my thyroid the surgeon said it was still optional. But I had a cyst on my thyroid that was growing, choking me in my sleep, and giving me sleep paralysis. No thanks doc, I'm opting for the knife. But I was still happy that he reminded me that surgery is still always my choice.
Unless my leg has exploded and I'm in ER and the doctor is saying they have to amputate to save my life. Ok, I might buy that. But for anyone who has ever felt uneasy about how their doctor or even the nursing staff is behaving, you as the patient have every right to demand someone else treat you or just refuse to work with the person who is making you feel uncomfortable. There is nothing worse than having added stress when you are dealing with surgery. I believe stress actually slows down the recovery process. So if any medical staff are causing stress, they need to be put out of my care team.
Wednesday, February 20, 2019
Phantom PVNS
I have it in my right knee but is it in my right foot too? Or maybe my left knee? Or my left hip?
I get all these strange sensations, usually painful, that simulate symptoms of the PVNS in my right knee. I realize that many of these odd occurances are due to either the PVNS pushing on a nerve or a ligament, or the overcompensating for going from not walking well to restoring my range of motion after a surgery.
However rare, it is possible to have PVNS in more than one joint so it is easy to jump to the conclusion that there is the potential for it to be so. And knowing there are people who have it in more than 2 joints makes the concern even greater. But knowing that it is possible to have it in multiple joints is precisely what drives the fear that it could be creeping in another place.
Lately I've been feeling a dull ache in my left hip. I have also been increasing my yoga practice thinking that will strengthen my joints and resolve the ache but possibly it's the yoga causing it. However, when the aching increases I can honestly say that I can't deny that it crosses my mind that I might have it in another joint. I just keep telling myself I don't have it at all. Deny, deny, deny.
I get all these strange sensations, usually painful, that simulate symptoms of the PVNS in my right knee. I realize that many of these odd occurances are due to either the PVNS pushing on a nerve or a ligament, or the overcompensating for going from not walking well to restoring my range of motion after a surgery.
However rare, it is possible to have PVNS in more than one joint so it is easy to jump to the conclusion that there is the potential for it to be so. And knowing there are people who have it in more than 2 joints makes the concern even greater. But knowing that it is possible to have it in multiple joints is precisely what drives the fear that it could be creeping in another place.
Lately I've been feeling a dull ache in my left hip. I have also been increasing my yoga practice thinking that will strengthen my joints and resolve the ache but possibly it's the yoga causing it. However, when the aching increases I can honestly say that I can't deny that it crosses my mind that I might have it in another joint. I just keep telling myself I don't have it at all. Deny, deny, deny.
Sunday, January 13, 2019
Medical Travel
The first time I heard about this idea was when I came across an article about a man who needed a hip replacement. It was within the last 5 years but I don't recall where I saw the article. Anyways, this guy found out it was going to cost tens of thousands of dollars out of pocket to cover the costs. Currently in America it's estimated to cost $40,000 to have hip replacement surgery and they usually want us out of the hospital as soon as the surgery is complete and have awaken from anesthesia. He researched how much the hip part cost. In America it was astronomical. He researched the cost of the hip replacement joint part alone and found he could order one from India for far less. Then he found a private hospital in Belgium that he was able to stay in for an entire week. He estimated that with the flight and stay in the hospital, as well as finding the part abroad, it cost him under $10,000. And he stayed in the hospital for an entire week to recover. He saved tens of thousands of dollars by making a little effort to search for a better option. Now there are several articles online about similar stories of people traveling to save on medical.
When my PVNS started crippling me as I had not yet been diagnosed I was faced with how to resolve this medical mystery. I had a temporary job at the time with no benefits or medical insurance. I was hoping to get hired permanently with a local credit union. But as fate would have it, they didn't hire me. A complete shock to the bankers who were so convinced I was going to get the job that half of the department didn't bother applying. I left the job to search for a permanent job that could give me benefits but that became cumbersome. I figured the universe had different plans. So I went back to school, filed for unemployment benefits, and applied for Medicaid. As long as I lived in poverty I would be taken care of. My PVNS diagnosis forced me to realize I would not be employable. Nobody wants to hire someone who has to be out for various medical reasons over long periods of time. And what would happen if one of my children got sick? I would have no ample sick time to stay with them. And I would never get a vacation again. I couldn't live like that. So I started working on a few business plans while I waited for my surgery that I scheduled right after my semester of school was over.
Fast forward 5 years later. I lost my Medicare coverage last year right after my 3rd surgery as now I make too much money between 2 of the businesses I started to receive any further benefits. But now that means my insurance is a substantial cost. I can't justify the expense so I opted for catastrophic insurance instead. So if I get admitted to and ER for over 24 hours I have expenses paid up to a certain amount. A little safer but still very scary. I have been again contemplating medical travel.
My parents stay in Arizona for half of the year and that is when they get their medical needs taken care of. They usually hop over the boarder into Mexico for everything from eye care to dental work. The other stuff they stay in the states and depend on Medicare. That's fine for them but what about me? I live near the Canadian border. My only hope for help from that country would be to marry someone in Canada and move there. Or move there and try to become a citizen but would I get my PVNS handled while I was there? Would they want to take on the burden of an expensive new citizen? How would I even start to shut down my businesses and move away from my children? It just isn't as feasible.
So my mind keeps going to this cruise ship idea. I recently saw that they do have a hospital ship that goes to places in Africa so why not have the joint replacement cruise? It seems like such a common requirement. Or maybe a "sectomy" cruise. You need something removed or replaced? Jump on a boat! But how would surgeons do surgery on a rocking boat? That's the part I'm not convinced about. Otherwise, recovery would start on a lower part of the boat and the last week would be hobbling around and getting PT. A few weeks on a boat and you get off with a brand new you! It's possible and could be far cheaper than a stay in a hospital. Even a $10,000 price tag for a hip replacement on the "sectomy cruise" would be a lot less than $40,000 in a hospital where there is no entertainment or free meals.
Even if the cruise idea doesn't happen I do think there are far better alternatives in the US than to just have surgery my home state. Seeing a doctor is at least $500 just to say Hi in an office. They won't ever call to discuss your situation. It's $500 or nothing! That's how much it would cost for just the insurance monthly. I would rather save my $6000 per year and do like the hip replacement guy did, find someplace to travel and have my PVNS removed there. I have heard India is a great place to go.
For now I'm still in the wait and see phase. Just getting an MRI will cost me at least $3000. So I will wait until my knee is unbearable before I start plotting this medical vacation. Unless I find me a Canadian to marry.
When my PVNS started crippling me as I had not yet been diagnosed I was faced with how to resolve this medical mystery. I had a temporary job at the time with no benefits or medical insurance. I was hoping to get hired permanently with a local credit union. But as fate would have it, they didn't hire me. A complete shock to the bankers who were so convinced I was going to get the job that half of the department didn't bother applying. I left the job to search for a permanent job that could give me benefits but that became cumbersome. I figured the universe had different plans. So I went back to school, filed for unemployment benefits, and applied for Medicaid. As long as I lived in poverty I would be taken care of. My PVNS diagnosis forced me to realize I would not be employable. Nobody wants to hire someone who has to be out for various medical reasons over long periods of time. And what would happen if one of my children got sick? I would have no ample sick time to stay with them. And I would never get a vacation again. I couldn't live like that. So I started working on a few business plans while I waited for my surgery that I scheduled right after my semester of school was over.
Fast forward 5 years later. I lost my Medicare coverage last year right after my 3rd surgery as now I make too much money between 2 of the businesses I started to receive any further benefits. But now that means my insurance is a substantial cost. I can't justify the expense so I opted for catastrophic insurance instead. So if I get admitted to and ER for over 24 hours I have expenses paid up to a certain amount. A little safer but still very scary. I have been again contemplating medical travel.
My parents stay in Arizona for half of the year and that is when they get their medical needs taken care of. They usually hop over the boarder into Mexico for everything from eye care to dental work. The other stuff they stay in the states and depend on Medicare. That's fine for them but what about me? I live near the Canadian border. My only hope for help from that country would be to marry someone in Canada and move there. Or move there and try to become a citizen but would I get my PVNS handled while I was there? Would they want to take on the burden of an expensive new citizen? How would I even start to shut down my businesses and move away from my children? It just isn't as feasible.
So my mind keeps going to this cruise ship idea. I recently saw that they do have a hospital ship that goes to places in Africa so why not have the joint replacement cruise? It seems like such a common requirement. Or maybe a "sectomy" cruise. You need something removed or replaced? Jump on a boat! But how would surgeons do surgery on a rocking boat? That's the part I'm not convinced about. Otherwise, recovery would start on a lower part of the boat and the last week would be hobbling around and getting PT. A few weeks on a boat and you get off with a brand new you! It's possible and could be far cheaper than a stay in a hospital. Even a $10,000 price tag for a hip replacement on the "sectomy cruise" would be a lot less than $40,000 in a hospital where there is no entertainment or free meals.
Even if the cruise idea doesn't happen I do think there are far better alternatives in the US than to just have surgery my home state. Seeing a doctor is at least $500 just to say Hi in an office. They won't ever call to discuss your situation. It's $500 or nothing! That's how much it would cost for just the insurance monthly. I would rather save my $6000 per year and do like the hip replacement guy did, find someplace to travel and have my PVNS removed there. I have heard India is a great place to go.
For now I'm still in the wait and see phase. Just getting an MRI will cost me at least $3000. So I will wait until my knee is unbearable before I start plotting this medical vacation. Unless I find me a Canadian to marry.
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