Well, actually it has been 7 months since I was diagnosed by I'm always searching for more. Did they discover anything? Is usually the question I'm always asking.
I found this site when I googled "PVNS 2013"
http://www.pathologyoutlines.com/topic/jointsPVNS.html
Thursday, November 7, 2013
Monday, November 4, 2013
My doctor broke up with me.
I had to see about 5 doctors before the surgeon who performed surgery on me told me what I had. I tried to ask him how much he knew and how much experience with PVNS he had. He only said that he had seen it before but didn't elaborate. He sent me home with a DIY post-op list of PT exercises I could do on my own back in June. That was the last I had seen of him until today.
I told him I had all the signs of PVNS returning. Tight feeling in my knee, puffy looking when it's not enflamed, snapping knee cap, shooting pains down my leg... He said the clicking could be from the rough spot that he found on the knee cap but said nothing can really be done at this point.
He went on to explain I'm in a status of "wait and see" and that unless I have serious issues with the knee then they don't want to do anything to it and if there is a problem he will just send me to a tumor specialist at a different hospital.
Not sure how I feel about it. He offered me no relief and no hope. No suggestions of what I should be on the lookout for other than inability to move my knee properly or massive swelling. That was not what I wanted to hear. I would rather have been told that if it gets worse at a degree of an 8 from 1 to 10 then I would feel like I got good advice. I'm probably at a 2 in that scale currently so I know that I won't likely need to see a doctor again anytime soon. Or I can hope.
This disease can be aggressive and while I wait, there can be major damage done to my knee by the PVNS. "Wait and See" is not good advice even though I know that was the best advice he could give me. I am assuming that the doctor is really not as familiar with PVNS as he indicated. Many doctors who are not familiar with it don't like to operate on it. So I will wait and I will see someone else when the time comes.
I told him I had all the signs of PVNS returning. Tight feeling in my knee, puffy looking when it's not enflamed, snapping knee cap, shooting pains down my leg... He said the clicking could be from the rough spot that he found on the knee cap but said nothing can really be done at this point.
He went on to explain I'm in a status of "wait and see" and that unless I have serious issues with the knee then they don't want to do anything to it and if there is a problem he will just send me to a tumor specialist at a different hospital.
Not sure how I feel about it. He offered me no relief and no hope. No suggestions of what I should be on the lookout for other than inability to move my knee properly or massive swelling. That was not what I wanted to hear. I would rather have been told that if it gets worse at a degree of an 8 from 1 to 10 then I would feel like I got good advice. I'm probably at a 2 in that scale currently so I know that I won't likely need to see a doctor again anytime soon. Or I can hope.
This disease can be aggressive and while I wait, there can be major damage done to my knee by the PVNS. "Wait and See" is not good advice even though I know that was the best advice he could give me. I am assuming that the doctor is really not as familiar with PVNS as he indicated. Many doctors who are not familiar with it don't like to operate on it. So I will wait and I will see someone else when the time comes.
Thursday, October 31, 2013
Shooting pains down my shin!
Yes, the tell-tale sign that PVNS is creeping its way back into my knee joint is the shooting pain down my leg. From the top of my knee down the shin as if little men are repelling down my nerves. Other parts of my body feel like they are flaring up too. Odd attacks of pain in random places. I can see also the visual indicator that the knee appears to have some puffier areas than the left knee. And as I exercise or do simple things like go down the stairs I feel the pressure of my knee at times so intense that I have to slow down. I'm going to see the doctor on Monday.
I was able to do hot yoga classes for 2 months. This was 3 months post arthroscopic synovectomy. I started in September and did 10 classes before the end of October. But the last few classes were difficult and some of the positions I never was able to do completely. But I at least felt encouraged those weeks I could bend my knee easier and felt like I was physically able for a moment.
I think most of the time I feel very disabled. When I see my daughter running and leaping I think to myself, "if only I could do that". I don't dare. To have your knee lock up and potentially blow up like a pomelo is not worth the risk. It's very discouraging knowing you can't do some things and can only live vicariously through others to enjoy things I would dare not do.
As I type this the pains are shooting with more intensity in all directions around my knee. Even up my thigh. Sharp pangs leap off the part of my knee that I know is suffering from whatever the PVNS is doing in there. It feels like it's trying to eat my knee. It's very much like a throbbing sensation.
I've heard a bath does not help this plight. And adding Epsom salts makes it even worse. I'm not at the point where I desire relief because the pains are not constant. To treat them might not be to my benefit overall. So I will just continue to wait until Monday. The next step I'm sure will be another MRI.
I was able to do hot yoga classes for 2 months. This was 3 months post arthroscopic synovectomy. I started in September and did 10 classes before the end of October. But the last few classes were difficult and some of the positions I never was able to do completely. But I at least felt encouraged those weeks I could bend my knee easier and felt like I was physically able for a moment.
I think most of the time I feel very disabled. When I see my daughter running and leaping I think to myself, "if only I could do that". I don't dare. To have your knee lock up and potentially blow up like a pomelo is not worth the risk. It's very discouraging knowing you can't do some things and can only live vicariously through others to enjoy things I would dare not do.
As I type this the pains are shooting with more intensity in all directions around my knee. Even up my thigh. Sharp pangs leap off the part of my knee that I know is suffering from whatever the PVNS is doing in there. It feels like it's trying to eat my knee. It's very much like a throbbing sensation.
I've heard a bath does not help this plight. And adding Epsom salts makes it even worse. I'm not at the point where I desire relief because the pains are not constant. To treat them might not be to my benefit overall. So I will just continue to wait until Monday. The next step I'm sure will be another MRI.
Monday, October 7, 2013
When will PVNS come back?
I've been suspecting that the PVNS is slowly creeping it's way back into my right knee.
Initially after my surgery on June 12 my recovery seemed to be going great. I was able to walk stairs again and do many activities I had to suspend because the tumors were preventing me from even bending my knee previous to the surgery. Ok, so I didn't stick to the diet. It's just too difficult when you have children in the house that demand food that is not on the paleo diet. So my experiment is not in effect as I initially wanted it to be.
Anyways, after the 3 weeks, maybe 4, I was doing some exercises where you stand against a wall and then slide down and back up. I was feeling really good about my recovery and went to almost 20 reps. My doctor said 10 at a time. I got to 18 and felt like the ligament in my knee tightened up so bad it took weeks to get the flexibility back.
Last month I started hot yoga. I still can't bend my knee to where I can do all of the positions but enough were I can participate. I still stand by my concept that exercise every day helps keep the knee in recovery and maintains the flexibility.
About a week and a half ago I felt something strange in my knee. As though I could literally feel something growing in there. I've been checking my knees for anything that feels foreign moving around in there. I can say that I am fairly certain that I do feel a very small mass in the place where my biggest tumor was located. But I'm sure I'm mostly just paranoid.
It will take much more time before I will know for certain that PVNS really is on its way back to making me miserable. I would like to think it was completely removed during surgery. Statistically that is highly unlikely. The last statistics that I saw out of 65 people with PVNS in their right knee, only 4 claimed to be free of PVNS after surgery.
So at this time I think I need to get on the acupuncture idea. I'm a little concerned about the cost but I can at least commit to once a month I think.
Initially after my surgery on June 12 my recovery seemed to be going great. I was able to walk stairs again and do many activities I had to suspend because the tumors were preventing me from even bending my knee previous to the surgery. Ok, so I didn't stick to the diet. It's just too difficult when you have children in the house that demand food that is not on the paleo diet. So my experiment is not in effect as I initially wanted it to be.
Anyways, after the 3 weeks, maybe 4, I was doing some exercises where you stand against a wall and then slide down and back up. I was feeling really good about my recovery and went to almost 20 reps. My doctor said 10 at a time. I got to 18 and felt like the ligament in my knee tightened up so bad it took weeks to get the flexibility back.
Last month I started hot yoga. I still can't bend my knee to where I can do all of the positions but enough were I can participate. I still stand by my concept that exercise every day helps keep the knee in recovery and maintains the flexibility.
About a week and a half ago I felt something strange in my knee. As though I could literally feel something growing in there. I've been checking my knees for anything that feels foreign moving around in there. I can say that I am fairly certain that I do feel a very small mass in the place where my biggest tumor was located. But I'm sure I'm mostly just paranoid.
It will take much more time before I will know for certain that PVNS really is on its way back to making me miserable. I would like to think it was completely removed during surgery. Statistically that is highly unlikely. The last statistics that I saw out of 65 people with PVNS in their right knee, only 4 claimed to be free of PVNS after surgery.
So at this time I think I need to get on the acupuncture idea. I'm a little concerned about the cost but I can at least commit to once a month I think.
Monday, August 19, 2013
Acupuncture!
It's been over 2 months since my arthroscopy. I continue to experience tight ligaments around my knee and other minor issues but daily physical activity is keeping me moving. I was hoping to get acupuncture soon after as well as sticking to a strict diet but the emotional and physical challenges I faced following surgery were not sustainable for the sheer discomfort I had experienced. I'm still interested in eating healthy and although i cave for sugar and coffee I'm staying on track with eating right.
Today I went to a new clinic for a session of acupuncture and realized that if anyone was experiencing acupuncture for the first time at that place it wouldn't seem like a pleasant experience. It's a community clinic and do they mean community. They had us all in the same room on random beds and chairs. It made me feel like I was in another country. It was not relaxing and quite distracting every time someone came into the room. It was also not a full session which was nice since it was difficult for me to lay there and listen to everyone else rustling around. It was a good thing I didn't wear jeans today because there was no way I was going to disrobe in front of a room full of people.
The acupuncture I received a little over a year ago was a stark contrast to today's session. Last year I got a full hour and a half complete with acupuncture on both sides and then a full body massage after. Can you guess where I will go next time?
If you have never experienced acupuncture I have 3 pieces of advice.
1. Do not move! Once the needles are in you do not want to move. I learned this during my second session nearly 20 years ago. The technician had left in a needle by mistake and when I moved I felt one of the worst surges of pain I have ever felt. That is because the needle was lodged into a nerve. Never again have I attempted to move during a session, even if it's an hour long. If you have a hard time staying still then maybe no acupuncture for you.
2. Investigate the clinic. Ask others about their experiences. Yelp is good for getting feedback and reviews on clinics. I've been to places where they insisted on using "cupping" which I do not like at all. And the worst nightmare was a guy that double charged me his fee and then charged me for 5 sessions when I had only 2. Not only that but he demanded his money and refused to discuss the billing. He even threatened to send me to collections! It doesn't hurt to try out a clinic and see how the session goes but not every clinic is the same. Make sure you are very comfortable.
3. Don't knock it until you try it. I always thought acupuncture was tomfoolery. To me people who used things like acupuncture and saw chiropractors where goofy people with made up ailments that went to made up doctors with made up gimmicks to supposedly fix these fictional problems. But when I fell down a flight of stairs not long after a terrible accident that caused problems with my hip locking nearly 20 years ago, I was petrified that I caused some serious damage. My landlord at the time was fighting a pulled muscle in his back and he insisted on me getting acupuncture. I went to 3 sessions and never had a problem with my hip again.
Acupuncture is like a deep tissue massage from the inside. I always walk away feeling relaxed and rejuvenated. I highly recommend it to those who are suffering just about anything. Supposedly it can also help you kick bad habits.
Today I went to a new clinic for a session of acupuncture and realized that if anyone was experiencing acupuncture for the first time at that place it wouldn't seem like a pleasant experience. It's a community clinic and do they mean community. They had us all in the same room on random beds and chairs. It made me feel like I was in another country. It was not relaxing and quite distracting every time someone came into the room. It was also not a full session which was nice since it was difficult for me to lay there and listen to everyone else rustling around. It was a good thing I didn't wear jeans today because there was no way I was going to disrobe in front of a room full of people.
The acupuncture I received a little over a year ago was a stark contrast to today's session. Last year I got a full hour and a half complete with acupuncture on both sides and then a full body massage after. Can you guess where I will go next time?
If you have never experienced acupuncture I have 3 pieces of advice.
1. Do not move! Once the needles are in you do not want to move. I learned this during my second session nearly 20 years ago. The technician had left in a needle by mistake and when I moved I felt one of the worst surges of pain I have ever felt. That is because the needle was lodged into a nerve. Never again have I attempted to move during a session, even if it's an hour long. If you have a hard time staying still then maybe no acupuncture for you.
2. Investigate the clinic. Ask others about their experiences. Yelp is good for getting feedback and reviews on clinics. I've been to places where they insisted on using "cupping" which I do not like at all. And the worst nightmare was a guy that double charged me his fee and then charged me for 5 sessions when I had only 2. Not only that but he demanded his money and refused to discuss the billing. He even threatened to send me to collections! It doesn't hurt to try out a clinic and see how the session goes but not every clinic is the same. Make sure you are very comfortable.
3. Don't knock it until you try it. I always thought acupuncture was tomfoolery. To me people who used things like acupuncture and saw chiropractors where goofy people with made up ailments that went to made up doctors with made up gimmicks to supposedly fix these fictional problems. But when I fell down a flight of stairs not long after a terrible accident that caused problems with my hip locking nearly 20 years ago, I was petrified that I caused some serious damage. My landlord at the time was fighting a pulled muscle in his back and he insisted on me getting acupuncture. I went to 3 sessions and never had a problem with my hip again.
Acupuncture is like a deep tissue massage from the inside. I always walk away feeling relaxed and rejuvenated. I highly recommend it to those who are suffering just about anything. Supposedly it can also help you kick bad habits.
Thursday, August 1, 2013
PT or not PT
Physical Therapy. Do I need it? After the arthroscopy I felt fine. I was doing the exercises my surgeon said I should I do and then got a little over entheusiastic about it and did more reps than I should have and then started experiencing pain. I decided PT was for me. I talked to a physical therapist that agreed I should start PT. I went through the process of getting a referral from my surgeon, called the PT office to make an appointment, went through their lengthy questions over the phone and then "OH! We don't accept your insurance! Call another PT". So I called PT office #2. They started asking me all the same questions, my name, phone number, address, blah blah blah. I cut the receptionist short so I could ask the pressing question, "Do you accept my insurance?" No.
I called the insurance company, "Where can I get PT?" Downtown Seattle.
Now I live in a neighborhood that is kind of south, kind of west of downtown and the traffic situation continues to get worse. Best case scenario, it can take up to a half hour to get downtown and sometimes longer during traffic. Otherwise it would take me 20 minutes to get there and get parking, which is not free. So the expense of the gas money, combined with the parking fees, along with time I don't have to waste sitting in traffic equates to not going to happen.
So now what? I will do it myself.
I hit the gym every day. (ok not every day but that's what I tell myself).
30 minutes on the bicycle to start and then move on to weight machines that allow me to do squats. I try to do a lot of different leg machines to mix it up. I find when I don't go to the gym my knee starts hurting and locking up. But when I do go to the gym I feel like I get more flexibility in my knee and less pain.
I decided physical therapy is not a professional opinion but a physical act. I can do it myself.
I called the insurance company, "Where can I get PT?" Downtown Seattle.
Now I live in a neighborhood that is kind of south, kind of west of downtown and the traffic situation continues to get worse. Best case scenario, it can take up to a half hour to get downtown and sometimes longer during traffic. Otherwise it would take me 20 minutes to get there and get parking, which is not free. So the expense of the gas money, combined with the parking fees, along with time I don't have to waste sitting in traffic equates to not going to happen.
So now what? I will do it myself.
I hit the gym every day. (ok not every day but that's what I tell myself).
30 minutes on the bicycle to start and then move on to weight machines that allow me to do squats. I try to do a lot of different leg machines to mix it up. I find when I don't go to the gym my knee starts hurting and locking up. But when I do go to the gym I feel like I get more flexibility in my knee and less pain.
I decided physical therapy is not a professional opinion but a physical act. I can do it myself.
Friday, July 19, 2013
Strange similarities
I've been noticing that people who have been diagnosed with PVNS also have reported similarities between other ailments. It's
interesting that some of us share other ailments such as arthritis,
plantar fasciitis, and thyroidal/cervical cysts. I wonder if there are
other similar tag-along ailments. Also unprovoked tendon or muscle tears, blood
vessels popping, and knee locking.
As for me I have experienced almost all of it except the arthritis. I've been having weird foot pain that could be plantar fasciitis but not exactly diagnosed.
As for me I have experienced almost all of it except the arthritis. I've been having weird foot pain that could be plantar fasciitis but not exactly diagnosed.
Tuesday, June 25, 2013
Totally cheating
I'm up and mobile. Still dealing with slight pain and swelling. Went out to a movie last night and that was a challenge to keep my knee bent for 2 hours. Very uncomfortable. I did start driving for the first time day before last. A bit of a challenge but as long as I'm not city driving I'm doing ok.
Depending on others to feed me during the first few days of recovery proved to blatantly go against my strict diet requests. I was fed a lot of eggs with cheese and buttered toast. Not what I requested but because food was prepared for me so infrequently I relented and ate small portions of what was presented.
Once I was able to move around on my own, the kitchen was not stocked according to my requests of fruits and vegetables. My mother did attempt to prepare a plate of beets for me. However, the beets had been in the refrigerator for several weeks and I did not know the condition of the beets before they were prepared and my mother has a habit of cooking up whatever without the alarm of any kind of risk. She has been known to give a few people food poisoning. So I did not eat the beets. I just kind of didn't eat very much while she was here. But because I was subjected to what was left in the kitchen after she departed, my diet choices were not what I was hoping.
So as far as my attempt to eat a strict diet of fruits and vegetables has gone out the window. Also I'm trying to avoid foods that are known to be GMO but that is becoming problematic because of the absence of labeling. Each time I think I'm GMO free, such as a papaya I purchased before surgery, only to find an article of the newest GMO foods to keep away from. Such as said papaya.
Although I would love to live off what grows in my garden, it does not yield enough produce to live off of. So as much as I would like to think that I'm avoiding GMO's I highly doubt that I am.
And because I don't recall an actual traumatic incident to my knee, which some PVNS sufferers report as an instigating cause, I'm starting to suspect that past GMO consumption could be probably cause of the diffused PVNS I obtained. I do suspect that because I do attempt to be aware of my diet choices, it could be a dramatic factor in why my PVNS seemed to grow much slower than other cases I have heard about.
It remains to be seen if my PVNS was completely eradicated by the arthroscopy performed. So I will continue to try to avoid refined foods and GMO suspects as well as start acupuncture treatments to see if that has any effect if the PVNS returns.
Stay tuned...
Depending on others to feed me during the first few days of recovery proved to blatantly go against my strict diet requests. I was fed a lot of eggs with cheese and buttered toast. Not what I requested but because food was prepared for me so infrequently I relented and ate small portions of what was presented.
Once I was able to move around on my own, the kitchen was not stocked according to my requests of fruits and vegetables. My mother did attempt to prepare a plate of beets for me. However, the beets had been in the refrigerator for several weeks and I did not know the condition of the beets before they were prepared and my mother has a habit of cooking up whatever without the alarm of any kind of risk. She has been known to give a few people food poisoning. So I did not eat the beets. I just kind of didn't eat very much while she was here. But because I was subjected to what was left in the kitchen after she departed, my diet choices were not what I was hoping.
So as far as my attempt to eat a strict diet of fruits and vegetables has gone out the window. Also I'm trying to avoid foods that are known to be GMO but that is becoming problematic because of the absence of labeling. Each time I think I'm GMO free, such as a papaya I purchased before surgery, only to find an article of the newest GMO foods to keep away from. Such as said papaya.
Although I would love to live off what grows in my garden, it does not yield enough produce to live off of. So as much as I would like to think that I'm avoiding GMO's I highly doubt that I am.
And because I don't recall an actual traumatic incident to my knee, which some PVNS sufferers report as an instigating cause, I'm starting to suspect that past GMO consumption could be probably cause of the diffused PVNS I obtained. I do suspect that because I do attempt to be aware of my diet choices, it could be a dramatic factor in why my PVNS seemed to grow much slower than other cases I have heard about.
It remains to be seen if my PVNS was completely eradicated by the arthroscopy performed. So I will continue to try to avoid refined foods and GMO suspects as well as start acupuncture treatments to see if that has any effect if the PVNS returns.
Stay tuned...
Thursday, June 13, 2013
Post-Op (warning, graphic content)
I went back to the doctor this morning to have my drain tube removed. Doctor said if I hadn't had it, then I would have that much more swelling to deal with. Because he is a genius for keeping the drain tube in overnight, I have no swelling. Just the pain of the incision points. I'm able to bend my knee with a little effort. Lots of ice and steadily taking the pain meds. I get a little worried about taking too much because I had a bad reaction from taking pain meds from a car accident about 20 years ago. So I get really freaked out about taking pain meds. Also I would not want to be addicted to this feeling.
When I took this photo after the doctor removed the drain tube, he said "you're sick". We both giggled and I told him about wanting to share it with others and that my photo wasn't half as bad as some of the photos that I have seen. Yeah it's a little bloody but the difference of the shape of the knee from the before photo just makes me really happy.
When I took this photo after the doctor removed the drain tube, he said "you're sick". We both giggled and I told him about wanting to share it with others and that my photo wasn't half as bad as some of the photos that I have seen. Yeah it's a little bloody but the difference of the shape of the knee from the before photo just makes me really happy.
Wednesday, June 12, 2013
Surgery complete
This morning I took this photo before I went to the hospital. It was all performed effortlessly. My surgeon told me during the pre-op yesterday that he has performed this procedure on a PVNS patient before. He could not guarantee that I will be free from PVNS.
Another PVNS sufferer that lives in my state said that he just gets a routine scope annually to clean it out again and will continue to do so until he needs another Total Knee Replacement (TKR).
Also I know of another case where a TKR was done back in September in Seattle and already is having problems from the PVNS. I still feel like I have been lucky to have this be my first surgery. I don't feel much pain other than the points of incision. I feel like I can move my knee which was difficult to do prior to the surgery.
It became humorous to see the faces of staff cock their head to the side with confusion when I tried to explain what PVNS was. Many hospital staff got a lesson on a rare disease today.
I have friends and family to take care of me during my recovery which they are saying about 5 days.
Tomorrow I do have to go back and get my blood drain removed. It makes my best friend woozy to look at it so I have to put it in the pocket of my sweatshirt. I pretty much went to the hospital in my pajamas.
There was a boy there getting surgery, he couldn't have been more than 2. My heart went out to him. I don't know what he was having done.
The waiting was the worst but there was a humorous hermit crab in the aquarium that couldn't decide which shell to use.
I am speaking very sporadically because I'm heavily medicated.
Monday, June 10, 2013
Counting down to surgery
In 2 days I will be recovering from my first surgery for PVNS, an arthroscopy. I'm beyond ready. I can barely walk and can't bend my knee very much. Last night when I stretched I could feel all of the extra tissue straining and it was very uncomfortable.
I'm so ready for this surgery that I keep thinking it's Tuesday but it's really Monday.
I have plenty to get done before the surgery so that time should fly right on by.
I'm excited and nervous but ready more than anything. I'm committing the next two weeks to relaxing and studying at a friends house so that I have someone to take care of me.
I had said that I would commit to the diet officially on June 1st but I keep thinking that I just don't want to commit yet. So it might be hard to switch but I won't really know until after the surgery and faced with the convenience of my kitchen once again.
I just have to find a way to commit to only buying things I will allow myself to eat. Then I will have to learn how to navigate restaurant menus and BBQ parties.
I do find that because I'm not yet committed, I'm allowing myself to eat all kinds of nonsense. I don't think I would be able to stop without reason, so I am using the surgery as the reason.
I'm so ready for this surgery that I keep thinking it's Tuesday but it's really Monday.
I have plenty to get done before the surgery so that time should fly right on by.
I'm excited and nervous but ready more than anything. I'm committing the next two weeks to relaxing and studying at a friends house so that I have someone to take care of me.
I had said that I would commit to the diet officially on June 1st but I keep thinking that I just don't want to commit yet. So it might be hard to switch but I won't really know until after the surgery and faced with the convenience of my kitchen once again.
I just have to find a way to commit to only buying things I will allow myself to eat. Then I will have to learn how to navigate restaurant menus and BBQ parties.
I do find that because I'm not yet committed, I'm allowing myself to eat all kinds of nonsense. I don't think I would be able to stop without reason, so I am using the surgery as the reason.
Wednesday, May 29, 2013
Straight up vegetables
So I'm getting a little jump start on my healthier lifestyle. I've eaten just one too many doughnuts to justify eating "anything I want". I'm feeling the flab and I'm not happy about it. So over the weekend I went to a market to buy only fruits and vegetables. Since I am not used to eating just vegetables I am not really going by any recipes quite yet. I'm just throwing whatever sounds good together. So today it was a bowl of radishes and then I cooked some sweet potatoes with shiitake mushrooms. That's it and that is all I plan on eating for the day. Sounds bland and boring but it is a start.
Tuesday, May 21, 2013
The Coffee Conflict
I love coffee. Maybe it's a Seattle thing. But I am fully addicted to it. I drink it in the morning and at times I find myself being offered a cup during the day. I drink that too. With turning to the "cancer fighting foods" concept I am getting mixed messages. A few websites attribute coffee to fighting cancer like this one:
http://www.aicr.org/foods-that-fight-cancer/coffee.html
It claims the following:
"Coffee contains:
Ok, more research is needed. So I don't consider this source as being bold faced truth to being an anti-cancer consumable.
However, another source points out that theobromine, theine, and tannin are alien to the blood and forces the liver and kidneys to work overtime to detoxify the blood. It throws tea under the bus as well. However, in this excerpt from "How to Fight Cancer and Win" it does not mention caffeine specifically.
That still leaves me wondering, should I really eliminate coffee?
For me I think that because there is no hard line for or against coffee specifically I will ween myself off of it and switch to tea exclusively. I usually drink tea throughout the day anyways. I just have to switch to something I will feel is coffee-like. I can blend Chicory in with an Assam tea to make a faux coffee.
While Chicory is not listed in the anti-cancer lists I've come across, it does have other benefits including aiding in digestion and weight loss.
http://www.aicr.org/foods-that-fight-cancer/coffee.html
It claims the following:
"Coffee contains:
- Chlorogenic acid, an antioxidant compound that is the major phenol in coffee
- Quinic acid, a phytochemical that contributes to the acidic taste of coffee
- Cafestol and kahweol, compounds that are extracted from the beans' oil during brewing. Unfiltered coffee, such as French press or boiled coffee, contains these compounds
- Caffeine, a naturally occurring stimulant that affects the central nervous system
- N-methylpyridinium (NMB), created by roasting, may make the antioxidants more potent
Ok, more research is needed. So I don't consider this source as being bold faced truth to being an anti-cancer consumable.
However, another source points out that theobromine, theine, and tannin are alien to the blood and forces the liver and kidneys to work overtime to detoxify the blood. It throws tea under the bus as well. However, in this excerpt from "How to Fight Cancer and Win" it does not mention caffeine specifically.
That still leaves me wondering, should I really eliminate coffee?
For me I think that because there is no hard line for or against coffee specifically I will ween myself off of it and switch to tea exclusively. I usually drink tea throughout the day anyways. I just have to switch to something I will feel is coffee-like. I can blend Chicory in with an Assam tea to make a faux coffee.
While Chicory is not listed in the anti-cancer lists I've come across, it does have other benefits including aiding in digestion and weight loss.
Friday, May 17, 2013
I like books
I just recently acquired a copy of "How to Fight Cancer & Win" by William L. Fischer
I know that PVNS is not considered cancer but because it acts like it I figure in my experiment I will treat it as such. Thankfully I wasn't diagnosed with cancer but you never know, they might determine that I do. I won't worry about that. I think I would rather have PVNS than cancer. I don't like either of them.
What is interesting already in this book is that it claims that 35% of cancer deaths were attributed to dietary factors. It was the highest rated. I do agree that many of the "foods" available to the general public are really just glorified poison. I already try to eat healthy and make good food choices. But there are times when I am faced with temptation to eat those things I know have hidden ingredients or just straight up chemicals. Additionally it claims that diet and nutrition are factors in 60 percent of cancers in women.
There is a long list of dietary recommendations from the National Cancer Institute.
1. Calcium-Rich Foods - stick with non-fat or low-fat varieties.
2. Virtually all fruits, vegetables, and most fish (later it says no shellfish because of nuclein content).
3. Eat less empty calories and more fiber.
4. The Maitake mushroom from Japan. It's rare, football sized and grows in rural northern Japan. Has been shown to stop the growth of certain cancer-tumor cells and even the HIV virus. Of course the FDA doesn't support that claim. They don't let many healthy things claim they are healthy. Which leads me to #5.
5. Greet Tea. Extensive studies have been done to prove that Green Tea has multiple health benefits. I should know this because I am in the tea industry. Go to www.mynecessitea.com for more information.
6. Beta-Carotene. Claims to be a powerful anticancer. Looks like carrots are my new best friend.
And then there is the recommended list of things to avoid.
1. Fat - the saturated and polyunsaturated kinds.
2. Cholesterol - this is found in most every animal cell. Meat-eaters beware.
3. Commercially Processed Fats - they are basically referring to margarine here. But also many cooking oils are highly processed and rendered unsuitable. The book recommends cold pressed oils such as; flax, pumpkin, soy, and walnut oils.
4. Nitrosamines - these are your smoked, salt-cured, and nitrate-cured meats. Ham, bacon, sausage, and hot dogs are off the menu. And jeryky too. Also it mentions that beer and whisky also contain nitrosamines. It says vodka and gin are better choices if I have to drink. And finally it throws pickled foods along in this category. I'm curious how nitrosamines get in the pickle. But until I find out I will be staying away from pickles and saur kraut.
5. No more BBQ! Aw, now that is going to be hard. The carcinogens that the meat absorbs from the smoke is bad, real bad.
6. Smoked foods. Including smoked salmon. That's another bummer. Cheese is out of the question anyways (refer to #1). So smoked gouda or cheddar will be off the menu too. Also smoked foods have added sodium nitrate as a preservative.
7. Carcinogenic mutagens. Found in cooked, smoked, roasted, and browned foods. Mutagens are agents that are able to cause a change in the basic structure of genes and have the ability to induce a genetic mutation. Foods listed to produce mutagens by cooking dairy products, cereals, potatoes, meat, fish, and baked goods. Like toasted bread and carmelized sugar. The WU Center for the Biology of Natural Substances found mutagens in coffee (roasted), hamburgers (from fast food establishments), and many commercially processed foods. Now coffee I was wondering about. I might just to have to accept coffee is out of the question. That will be difficult to give up. Also fluoride is a carcinogen and dumped into our tap water. I will be switching to bottled water, preferably with large refillable bottles.
8. Apple Juice (the glucose count is too high)
9. Distilled Water - They didn't give a reason, they just quoted the U.S. National Research Council
At the end of the list of mutagens, they list foods that are anti-mutagens;
Wheat Sprouts
Leaf Lettuce
Brussel Sprouts
Mustard Greens
Cabbage
Broccoli
Spinach
And finally it goes in much detail over many other subjects. But it specifically goes over the following:
Wheat grass
Flax seed oil
Fish oil
Bee pollon/Royal jelly
Ginseng
Gotu Kola
I know that PVNS is not considered cancer but because it acts like it I figure in my experiment I will treat it as such. Thankfully I wasn't diagnosed with cancer but you never know, they might determine that I do. I won't worry about that. I think I would rather have PVNS than cancer. I don't like either of them.
What is interesting already in this book is that it claims that 35% of cancer deaths were attributed to dietary factors. It was the highest rated. I do agree that many of the "foods" available to the general public are really just glorified poison. I already try to eat healthy and make good food choices. But there are times when I am faced with temptation to eat those things I know have hidden ingredients or just straight up chemicals. Additionally it claims that diet and nutrition are factors in 60 percent of cancers in women.
There is a long list of dietary recommendations from the National Cancer Institute.
1. Calcium-Rich Foods - stick with non-fat or low-fat varieties.
2. Virtually all fruits, vegetables, and most fish (later it says no shellfish because of nuclein content).
3. Eat less empty calories and more fiber.
4. The Maitake mushroom from Japan. It's rare, football sized and grows in rural northern Japan. Has been shown to stop the growth of certain cancer-tumor cells and even the HIV virus. Of course the FDA doesn't support that claim. They don't let many healthy things claim they are healthy. Which leads me to #5.
5. Greet Tea. Extensive studies have been done to prove that Green Tea has multiple health benefits. I should know this because I am in the tea industry. Go to www.mynecessitea.com for more information.
6. Beta-Carotene. Claims to be a powerful anticancer. Looks like carrots are my new best friend.
And then there is the recommended list of things to avoid.
1. Fat - the saturated and polyunsaturated kinds.
2. Cholesterol - this is found in most every animal cell. Meat-eaters beware.
3. Commercially Processed Fats - they are basically referring to margarine here. But also many cooking oils are highly processed and rendered unsuitable. The book recommends cold pressed oils such as; flax, pumpkin, soy, and walnut oils.
4. Nitrosamines - these are your smoked, salt-cured, and nitrate-cured meats. Ham, bacon, sausage, and hot dogs are off the menu. And jeryky too. Also it mentions that beer and whisky also contain nitrosamines. It says vodka and gin are better choices if I have to drink. And finally it throws pickled foods along in this category. I'm curious how nitrosamines get in the pickle. But until I find out I will be staying away from pickles and saur kraut.
5. No more BBQ! Aw, now that is going to be hard. The carcinogens that the meat absorbs from the smoke is bad, real bad.
6. Smoked foods. Including smoked salmon. That's another bummer. Cheese is out of the question anyways (refer to #1). So smoked gouda or cheddar will be off the menu too. Also smoked foods have added sodium nitrate as a preservative.
7. Carcinogenic mutagens. Found in cooked, smoked, roasted, and browned foods. Mutagens are agents that are able to cause a change in the basic structure of genes and have the ability to induce a genetic mutation. Foods listed to produce mutagens by cooking dairy products, cereals, potatoes, meat, fish, and baked goods. Like toasted bread and carmelized sugar. The WU Center for the Biology of Natural Substances found mutagens in coffee (roasted), hamburgers (from fast food establishments), and many commercially processed foods. Now coffee I was wondering about. I might just to have to accept coffee is out of the question. That will be difficult to give up. Also fluoride is a carcinogen and dumped into our tap water. I will be switching to bottled water, preferably with large refillable bottles.
8. Apple Juice (the glucose count is too high)
9. Distilled Water - They didn't give a reason, they just quoted the U.S. National Research Council
At the end of the list of mutagens, they list foods that are anti-mutagens;
Wheat Sprouts
Leaf Lettuce
Brussel Sprouts
Mustard Greens
Cabbage
Broccoli
Spinach
And finally it goes in much detail over many other subjects. But it specifically goes over the following:
Wheat grass
Flax seed oil
Fish oil
Bee pollon/Royal jelly
Ginseng
Gotu Kola
Thursday, May 9, 2013
Omlet
Even though I am eating what I want, I am also eating what I need. So future-wise this would be something I would eat. I tend to open the fridge and just start throwing ingredients together. This is what I came up with today. I chopped shiitake mushrooms and cilantro and threw them in a pan with coconut oil. Then I threw about a teaspoon of chopped garlic in there. I scrambled up 2 eggs with coconut water. Mixed it all together and voila! A healthy omlet. I was going to toss in sunflower seeds but either forgot or was just too hungry to add more to it.
Tuesday, May 7, 2013
Lifestyle changes coming
It is so great to have a support system. I found a page on Facebook called "PVNS is Pants" and it has been nothing but awesome. Especially when I post questions and get quick responses. Having only starting my journey, it is encouraging to get feedback and hear stories of seasoned PVNS sufferers.
I've been terrible at keeping up with an exercise regiment because I feel so disabled, it discourages me. I can no longer do many of the activities I used to be able to do. I feel quite bummed when I see people in their jogging gear and think to myself, "I can't do that". But I know I need to change my tune when it comes to being active. I can still do things, just not everything. So I started getting up earlier to do sit ups and leg lifts. At least I can do that. That is a start and I will continue to seek exercise activities that I can do pre-op. I need to get into that habit long before I commit to all of the changes I anticipate.
I have not yet got any acupuncture sessions planned but I have a few places I am thinking of going to. That is still a ways off. I was in a debate yesterday of whether or not acupuncture is a viable source of healing. I believe it is because it has worked for me with other things. My friend suggested it is just a placebo. Yet, he has never tried it so I'm sticking to my plan.
My argumentative friend also pointed out that if I am to change my diet and commit to it, I am crazy for currently eating everything under the sun. I explained the process I am taking with regards to what I eat. This month I am eating anything that is offered. Fish and chips, yes. Ice cream, yes. Cookies, yes. But when I am eating them. I am slowly savoring the initial taste and enjoying it. Then as I am finishing consuming I change my thinking to, "what is so great about this?". I start thinking about how much sugar or fat I am consuming and then declare the flavor is not all that great either. I am psyching myself out so that when I am confronted in the future about these same edibles I will think, yes that is gross. And therefore I won't be tempted to eat them after June 1st. That is the day I chose to commit to my new diet so that it won't be such a shocker when I am post-op June 12th.
I've been terrible at keeping up with an exercise regiment because I feel so disabled, it discourages me. I can no longer do many of the activities I used to be able to do. I feel quite bummed when I see people in their jogging gear and think to myself, "I can't do that". But I know I need to change my tune when it comes to being active. I can still do things, just not everything. So I started getting up earlier to do sit ups and leg lifts. At least I can do that. That is a start and I will continue to seek exercise activities that I can do pre-op. I need to get into that habit long before I commit to all of the changes I anticipate.
I have not yet got any acupuncture sessions planned but I have a few places I am thinking of going to. That is still a ways off. I was in a debate yesterday of whether or not acupuncture is a viable source of healing. I believe it is because it has worked for me with other things. My friend suggested it is just a placebo. Yet, he has never tried it so I'm sticking to my plan.
My argumentative friend also pointed out that if I am to change my diet and commit to it, I am crazy for currently eating everything under the sun. I explained the process I am taking with regards to what I eat. This month I am eating anything that is offered. Fish and chips, yes. Ice cream, yes. Cookies, yes. But when I am eating them. I am slowly savoring the initial taste and enjoying it. Then as I am finishing consuming I change my thinking to, "what is so great about this?". I start thinking about how much sugar or fat I am consuming and then declare the flavor is not all that great either. I am psyching myself out so that when I am confronted in the future about these same edibles I will think, yes that is gross. And therefore I won't be tempted to eat them after June 1st. That is the day I chose to commit to my new diet so that it won't be such a shocker when I am post-op June 12th.
Saturday, April 27, 2013
Diet of the future
Researching "cancer fighting" diets I came across a list called "Superfoods": However the first item listed was yogurt. I know the culture of bacteria is good for the immune system so I plan to just take a probiotic supplement.
Another website offered this shopping list:
Read more: http://www.care2.com/greenliving/27-top-cancer-fighting-foods.html#ixzz2RhxQCt3G
Another website offered this shopping list:
27 Top Cancer-Fighting Foods
Anti-Cancer Grocery List
Vegetables
Broccoli
Cabbage
Cauliflower
Carrots
Kale
Mushrooms: shiitake, maitake, reishi, Agaricus blazei Murill, and Coriolus Versicolor
Seaweed and other sea vegetables
Sweet potatoes
Fruit
Avocados
Chili peppers
Figs
Grapefruits
Grapes
Oranges and lemons
Papayas
Raspberries
Tomatoes
Seeds & Nuts
Flax
Nuts
Herbs & Spices
Garlic
Rosemary
Tapioca
Tumeric
Beverages
Red wine
Soy products
Green tea and black tea
Vegetables
Broccoli
Cabbage
Cauliflower
Carrots
Kale
Mushrooms: shiitake, maitake, reishi, Agaricus blazei Murill, and Coriolus Versicolor
Seaweed and other sea vegetables
Sweet potatoes
Fruit
Avocados
Chili peppers
Figs
Grapefruits
Grapes
Oranges and lemons
Papayas
Raspberries
Tomatoes
Seeds & Nuts
Flax
Nuts
Herbs & Spices
Garlic
Rosemary
Tapioca
Tumeric
Beverages
Red wine
Soy products
Green tea and black tea
Read more: http://www.care2.com/greenliving/27-top-cancer-fighting-foods.html#ixzz2RhxQCt3G
Here are some descriptions about what some of these do in order to boost the immune system or react with cancer cells specifically from the "superfoods" descriptions.
Here is the link for this information: http://www.cancercenter.com/after-care-services/super-foods.cfm
This is a good start as this is a lot of the things that are found in my existing diet. I'm still trying to find out if wine and coffee are ok. Coffee will be hard for me to cut out. I have seen conflicting information on both of them. As of June 1 I will begin eating only what I find to be linked to being toxic to tumor cells, slows, or inhibits their growth. And I'm really going to miss cheese. In addition to these, vitamins are also important to this diet. I will be taking vitamin D (Researchers suggest that vitamin D curbs the growth of cancerous cells.) and a multi vitamin. I might also start taking fish oil. One important aspect is not to assume vitamins will be my replacement for nutrients.
Food for thought:
Fat and sugar can suppress the immune system.
Drinking plenty of water is important (I'm notorious for not doing that).
Drink more green tea! (I know this first hand because I actually am a tea educator.)
Here is the link for the "superfood" information: http://www.cancercenter.com/after-care-services/super-foods.cfm
Garlic
Garlic has been found to stimulate natural protection against tumor cells. It has been discovered that garlic is toxic to invading pathogens and tumor cells, however it is harmless to normal, healthy cells.Carotenoids
Carotenoids and bioflavonoids absorb dangerous particles. They have the potential to stimulate the immune system. There is some evidence that both of these may be toxic to tumor cells. Carotenoids can be found in green and orange fruits and vegetables. Bioflavonoids are found in citrus, whole grains, honey, and other plant foods.Cruciferous Vegetables
Broccoli, brussel sprouts, cabbage, and cauliflower all have an active ingredient called “indoles” which have been proven to be protective against cancer. These vegetables are able to increase the body’s production of important protective enzymes.Legumes
Also known as seed foods. These foods have a unique ability to envelop tumor cells and prevent their growth.Others
Apples, apricots, barley, citrus fruit, cranberries, fiber, figs, fish oil, fish, ginger, green tea, spinach, and seaweed have the ability to slow tumor growth in various ways.Here is the link for this information: http://www.cancercenter.com/after-care-services/super-foods.cfm
This is a good start as this is a lot of the things that are found in my existing diet. I'm still trying to find out if wine and coffee are ok. Coffee will be hard for me to cut out. I have seen conflicting information on both of them. As of June 1 I will begin eating only what I find to be linked to being toxic to tumor cells, slows, or inhibits their growth. And I'm really going to miss cheese. In addition to these, vitamins are also important to this diet. I will be taking vitamin D (Researchers suggest that vitamin D curbs the growth of cancerous cells.) and a multi vitamin. I might also start taking fish oil. One important aspect is not to assume vitamins will be my replacement for nutrients.
Food for thought:
Fat and sugar can suppress the immune system.
Drinking plenty of water is important (I'm notorious for not doing that).
Drink more green tea! (I know this first hand because I actually am a tea educator.)
Here is the link for the "superfood" information: http://www.cancercenter.com/after-care-services/super-foods.cfm
Friday, April 26, 2013
Picture of my knees
Here is a picture of my knees as of today. It's as pretty as they get before adorning them with surgical scars. You can see the bulging where the main tumor area in the lower right side of the knee on the left. That is my right knee. You can also see how swollen the knee on the left appears. That is not swelling, it's just the area that is effected by the PVNS.
I have PVNS in my right knee
I was diagnosed with PVNS of my right knee this week, 2 days before my 40th birthday.
History of my knee:
When I was 16 my knee locked up after repeatedly bending my knee while painting. It was locked up for an hour before it was finally unlocked. My doctor had me wear a leg brace for a week. (I think that was excessive). It locked up again within a year but that time I knew how to unlock it.
Fast forward to approximately 10 years ago as that is as far back as I can remember when I noticed a large bump protruding from the lower left side of my right knee. I saw a doctor and she said, "that could be extra muscle".
In April of 2010 I returned home from the gym and my knee started swelling up. I laid up for a week and the swelling went down. But then in July of that same year I was mowing the lawn and noticed swelling again. This time it didn't go down so quickly, after 2 weeks of swelling another doctor said, "take some ibuprofen". That helped and I learned not to aggravate my knee.
Later that same year I noticed a small hard knot in left side of my right calf, near the knee. Suddenly whatever was going on in there burst and bled out. I thought "blood clot straight to the heart!" and panicked. I went to the doctor who once again shrugged and told me to ice it. I had a huge bruise on my leg for quite a few weeks.
About a year ago I noticed the bump was moving around. It started popping in and out of it's usual place.
And in June I got a pulled muscle in my right calf. Nearly a month later the same muscle completely tore for no apparent reason other than simply jogging across a room for a hug.
Last fall the movement of the bump was getting to the point where if I wanted to sit down I had to manually manipulate it to be able to have full range of my knee. Stairs no longer were easy. I saw another doctor. She said, "I don't know what that could be, I don't know what to tell you."
I started the process to be able to see my family doctor which I was finally able to see last month. He also was baffled by my bump. He sent me for xrays and to see a surgeon who claimed he couldn't see me until July at the earliest. My doctor was able to convince the surgeon's office to see me sooner.
When I saw the surgeon he said, "more xrays."
I returned and he said, "MRI"
After the MRI he said, "Pigmented villonodular synovitis (PVNS) and you will need an arthroscopy performed."
My first one is scheduled for June 12.
What the heck is PVNS?:
When I informed friends and family a few people were skeptical, they assumed it was another made up fictitious "problem" that could be remedied through pharmaceuticals. NOPE! Not even close. I became frantic to learn about this rare disorder. The statistics I found were that 1.8 in a million get this disorder. It starts in the lining of a joint. Could be an elbow, wrist, shoulder, hip, ankle, but mostly effects the knee. Only one in 10 people have been able to eradicate it through treatment which is either arthroscopy, knee surgery, and radiation therapy. It acts like a cancer, spreading either locally or in a diffused manner (I have that). Diffused is far more difficult to remove because if even one cell is left on the joint, it starts growing all over again. Amputation isn't even a final option because the PVNS can regenerate at the location. No one is immune to some type of surgery with this condition. My surgeon claims that PVNS is spread by "trauma" of the location. I'm assuming he means the more you use it, the more PVNS spreads. PVNS can return as rapidly as one year and as slowly as 10 years. PVNS can eventually cause damage to ligaments and bone causing the need for a full replacement of the joint effected. However, PVNS can still return afterward. I have heard of some people having multiple joint replacement surgeries. Knee surgery alone can be a 6 month healing process. People in their middle ages tend to discover it but children are diagnosed with it as well. Most are misdiagnosed before they figure out what it is because most doctors have never come across it. So far that's all the information I have uncovered up to this point.
Now what?:
Today I am crippled to the point where I have to limp. I was able to wear a brace or wrap of some sort for several months to get some range of motion but today that doesn't even help. I have a cane but have not been daring enough to use it. Although there isn't much pain it is extremely uncomfortable bending my knee in the slightest. Driving, walking, even laying down can be challenging for me.
I remember a woman telling me about her sister getting cancer. She said that her sister had her tumor removed but didn't want radiation. So she changed her diet. She has been in remission ever since. I figured, there must be something to that. I've heard of "staving the cells". So I'm going to try that. A week before the surgery I'm going on a strict diet that is close to paleo but specific to foods and nutrition known to slow down the spread of foreign cells. Until then, I'm going to eat whatever I want.
I'm also going to try treating it with acupuncture and yoga style exercises. I'm going to be forced into an ultra healthy lifestyle. And I'm going to have to embrace it as though my life depended on it in order to fight this horrible affliction.
History of my knee:
When I was 16 my knee locked up after repeatedly bending my knee while painting. It was locked up for an hour before it was finally unlocked. My doctor had me wear a leg brace for a week. (I think that was excessive). It locked up again within a year but that time I knew how to unlock it.
Fast forward to approximately 10 years ago as that is as far back as I can remember when I noticed a large bump protruding from the lower left side of my right knee. I saw a doctor and she said, "that could be extra muscle".
In April of 2010 I returned home from the gym and my knee started swelling up. I laid up for a week and the swelling went down. But then in July of that same year I was mowing the lawn and noticed swelling again. This time it didn't go down so quickly, after 2 weeks of swelling another doctor said, "take some ibuprofen". That helped and I learned not to aggravate my knee.
Later that same year I noticed a small hard knot in left side of my right calf, near the knee. Suddenly whatever was going on in there burst and bled out. I thought "blood clot straight to the heart!" and panicked. I went to the doctor who once again shrugged and told me to ice it. I had a huge bruise on my leg for quite a few weeks.
About a year ago I noticed the bump was moving around. It started popping in and out of it's usual place.
And in June I got a pulled muscle in my right calf. Nearly a month later the same muscle completely tore for no apparent reason other than simply jogging across a room for a hug.
Last fall the movement of the bump was getting to the point where if I wanted to sit down I had to manually manipulate it to be able to have full range of my knee. Stairs no longer were easy. I saw another doctor. She said, "I don't know what that could be, I don't know what to tell you."
I started the process to be able to see my family doctor which I was finally able to see last month. He also was baffled by my bump. He sent me for xrays and to see a surgeon who claimed he couldn't see me until July at the earliest. My doctor was able to convince the surgeon's office to see me sooner.
When I saw the surgeon he said, "more xrays."
I returned and he said, "MRI"
After the MRI he said, "Pigmented villonodular synovitis (PVNS) and you will need an arthroscopy performed."
My first one is scheduled for June 12.
What the heck is PVNS?:
When I informed friends and family a few people were skeptical, they assumed it was another made up fictitious "problem" that could be remedied through pharmaceuticals. NOPE! Not even close. I became frantic to learn about this rare disorder. The statistics I found were that 1.8 in a million get this disorder. It starts in the lining of a joint. Could be an elbow, wrist, shoulder, hip, ankle, but mostly effects the knee. Only one in 10 people have been able to eradicate it through treatment which is either arthroscopy, knee surgery, and radiation therapy. It acts like a cancer, spreading either locally or in a diffused manner (I have that). Diffused is far more difficult to remove because if even one cell is left on the joint, it starts growing all over again. Amputation isn't even a final option because the PVNS can regenerate at the location. No one is immune to some type of surgery with this condition. My surgeon claims that PVNS is spread by "trauma" of the location. I'm assuming he means the more you use it, the more PVNS spreads. PVNS can return as rapidly as one year and as slowly as 10 years. PVNS can eventually cause damage to ligaments and bone causing the need for a full replacement of the joint effected. However, PVNS can still return afterward. I have heard of some people having multiple joint replacement surgeries. Knee surgery alone can be a 6 month healing process. People in their middle ages tend to discover it but children are diagnosed with it as well. Most are misdiagnosed before they figure out what it is because most doctors have never come across it. So far that's all the information I have uncovered up to this point.
Now what?:
Today I am crippled to the point where I have to limp. I was able to wear a brace or wrap of some sort for several months to get some range of motion but today that doesn't even help. I have a cane but have not been daring enough to use it. Although there isn't much pain it is extremely uncomfortable bending my knee in the slightest. Driving, walking, even laying down can be challenging for me.
I remember a woman telling me about her sister getting cancer. She said that her sister had her tumor removed but didn't want radiation. So she changed her diet. She has been in remission ever since. I figured, there must be something to that. I've heard of "staving the cells". So I'm going to try that. A week before the surgery I'm going on a strict diet that is close to paleo but specific to foods and nutrition known to slow down the spread of foreign cells. Until then, I'm going to eat whatever I want.
I'm also going to try treating it with acupuncture and yoga style exercises. I'm going to be forced into an ultra healthy lifestyle. And I'm going to have to embrace it as though my life depended on it in order to fight this horrible affliction.
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