I have hereditary clinical depression. I know my Father has it, as he has been hospitalized twice for it. I lost my sister to suicide when she was 14 which led me to a lot of unprocessed grief that pops up now and then when triggered by certain situations. My latest bout started when I lost a stone in one of my rings. That's all it took.
Having clinical depression is like being dulled to what life can be. A constant feeling of dread and negative thoughts. I have learned that those thoughts are but a habit and can be changed to positive thinking that has drastically changed my ability to keep my depression attacks at bay. I have no idea if other people who suffer depression have similar experiences, but this is mine.
It comes on like a virus. It starts with dark thoughts. Thoughts that I can't control. They are dark and demeaning. I say that Hateful Holly has come to torment me. I fight her for days. She says terrible things such as, "You aren't good enough. Everyone in your life you have ever been close to has either lost their mind or died. If you get close to anyone else, they will die too. Or they will leave you. You are cursed!" I know none of this to be true and I will audibly say, "Lies! Not true!" But it's years of things said by people I cared deeply that said very hurtful words to me that stay stored to come out precicely at these moments. Some have apologized for those words, but they stay locked away until Hateful Holly pulls them out like an old suitcase of memories.
It usually takes 2 to 3 days to successfully be submerged in the worst of my symptoms. Where I'm vomiting tears from my tear ducts and my entire heart and soul has the aches. It feels precisely like the pain of when someone dies. It's usually my sister who triggers my terrible days where I have to process this pain and grief to return to normal again. I will sit in the dark and just let the tears flow.
This is all very exhausting. I do not want to socialize at all. I do not want to leave my house. I want to sleep through this terrible time. If I do get the energy to make a call to someone and they don't answer that is all I can muster and then I will continue to weep until I have fully recovered.
My last bout lasted over 2 weeks which is very prolonged. It was due to a series of set backs that caused me to relapse back into the deepest of the grief. Anything from being accused of ruining someone elses life (I get accused of that often because of a certain addict in my life so I should be used to it), or people who have jilted me, or at least my perception of being jilted and becoming confused at the strange signals people give when they get scared of intamacy. Why is that my problem? Or more importantly, why do I take it so personal? Something to work on.
But I know that each time that Hateful Holly says, "Today is a good day to drive off a bridge." I know that I need to kick her ass and conquer her with positive affirmations. Which always brings me back to being "normal" again. But she is a terrible part of me that brings her virus whenever I get triggered.
I know I have to be careful with myself, take care of myself, rest easy, and recover. And in the end I'm always ok.
As this relates to my PVNS, the first 2 surgeries I got the depression from feeling hopeless and helpless when recovering and being unable to walk. So I not only got to suffer through recovering from the surgery but a bout of depression as well. By the 3rd surgery, I learned the best ways to be mobile and how to navigate around the time it would take me to return to all of my regular abilities. I didn't get the depression. Success!
Monday, December 24, 2018
Sunday, December 9, 2018
My Me Time
In the past 2 years I lost over 20lbs and went from a size 8 to a size 4 within a year.
Many people who struggle with their weight want to know my secret.
My secret is my me time.
I have discovered I need at least 3 hours of my morning dedicated to myself and my health before I can ever begin to be ready for my day. At least that is what I tell myself. And it makes all the difference.
I start by getting up early every morning. I take the first part of my day sipping coffee and watching the sunrise. Meditating must happen first. Then I run through a list of at least 10 affirmations and then a five minute yoga stretch. I then make my way to the gym and ride a stationary bicycle for at least 25 minutes. I push myself harder each time so I use a setting that simulates a varied terrain so that I'm clearing at least 6 miles of going up and down hills in that 25 minutes. Or I might go swimming for that 25 minutes. Swimming and the bicycle is all I feel ok with for that long. Otherwise I could do an eliptical or even a low setting on a stair climber. But I rarely use those because I feel that I could accidentally trigger my knee to swell up. I'm not that daring.
I feel the need to keep my knee moving so that it doesn't degenerate faster over the years since I've already had 3 knee surguries and my PVNS could come back. Currently I am pretending like I don't have it. Like I never had it. PVNS? What's that? Never heard of it.
Another trick is that when I get home from the gym I make a smoothie with Matcha in it. That is my secret ingredient to keeping the weight off. Also, not eating emotionally. And definitely no eating after 8pm, especially no sugar.
I'm determined to go through a sugar detox after December. The fall is the worst time for sweets. They are everywhere.
If I do not get my morning routine out of the way and have my dedicated me time to invest in my health, I just feel off. But the work over time is obvious. I'm just one of the lucky ones that doesn't really suffer from pain. Or maybe I do but I'm used to it so I just pretend like it's not there.
Many people who struggle with their weight want to know my secret.
My secret is my me time.
I have discovered I need at least 3 hours of my morning dedicated to myself and my health before I can ever begin to be ready for my day. At least that is what I tell myself. And it makes all the difference.
I start by getting up early every morning. I take the first part of my day sipping coffee and watching the sunrise. Meditating must happen first. Then I run through a list of at least 10 affirmations and then a five minute yoga stretch. I then make my way to the gym and ride a stationary bicycle for at least 25 minutes. I push myself harder each time so I use a setting that simulates a varied terrain so that I'm clearing at least 6 miles of going up and down hills in that 25 minutes. Or I might go swimming for that 25 minutes. Swimming and the bicycle is all I feel ok with for that long. Otherwise I could do an eliptical or even a low setting on a stair climber. But I rarely use those because I feel that I could accidentally trigger my knee to swell up. I'm not that daring.
I feel the need to keep my knee moving so that it doesn't degenerate faster over the years since I've already had 3 knee surguries and my PVNS could come back. Currently I am pretending like I don't have it. Like I never had it. PVNS? What's that? Never heard of it.
Another trick is that when I get home from the gym I make a smoothie with Matcha in it. That is my secret ingredient to keeping the weight off. Also, not eating emotionally. And definitely no eating after 8pm, especially no sugar.
I'm determined to go through a sugar detox after December. The fall is the worst time for sweets. They are everywhere.
If I do not get my morning routine out of the way and have my dedicated me time to invest in my health, I just feel off. But the work over time is obvious. I'm just one of the lucky ones that doesn't really suffer from pain. Or maybe I do but I'm used to it so I just pretend like it's not there.
Sunday, November 4, 2018
PVNS - Getting Surgery Sooner Than Later
When doctors talk about diffused PVNS I hear them often say it's "everywhere". I always imagined it started in one spot and spread but after my last surgery and the photos they showed me, I finally understood what "everywhere" really meant. It looks like someone sprayed red dots all over the lining of my knee. Those little red dots grow into the substance that covers the lining of the joint. How to keep those little red dots from forming though?
My first surgeon didn't want me to return and at my post op said we should "wait and see" when I told him it was coming back. I have heard of others having their PVNS do extreme damage to the joint when left unchecked. Eating away at bone and ligaments. I had a leg muscle have an extreme strain for no reason about a year before my first surgery. So the wait and see option isn't always the best advice but I understand the doctors suggestion. It really is the best advice he could give me. But the deterioration happened rather quickly and I had my 2nd surgery about a year and a half after the first.
My second surgeon said it was "everywhere" during the second surgery. I waited 17 months between surgery 2 and 3. The surgeon said he saw less than the previous time. What did I do different between those times? I think it had a lot to do with applying frankensense and CBD oil which I was not doing between surgery 1 and 2.
Now that it has been 7 months since my 3rd surgery, I am still mobile and applying the oils diligently. Waiting and seeing if that helps.
My first surgeon didn't want me to return and at my post op said we should "wait and see" when I told him it was coming back. I have heard of others having their PVNS do extreme damage to the joint when left unchecked. Eating away at bone and ligaments. I had a leg muscle have an extreme strain for no reason about a year before my first surgery. So the wait and see option isn't always the best advice but I understand the doctors suggestion. It really is the best advice he could give me. But the deterioration happened rather quickly and I had my 2nd surgery about a year and a half after the first.
My second surgeon said it was "everywhere" during the second surgery. I waited 17 months between surgery 2 and 3. The surgeon said he saw less than the previous time. What did I do different between those times? I think it had a lot to do with applying frankensense and CBD oil which I was not doing between surgery 1 and 2.
Now that it has been 7 months since my 3rd surgery, I am still mobile and applying the oils diligently. Waiting and seeing if that helps.
Sunday, October 14, 2018
How does PVNS grow?
I wasn't sure until I've seen enough images from my various surgeries to really understand how PVNS spreads in the lining of the joint. First it just appears as a little red spot that has settled somewhere in your joint but it's not just one little red spot, its many. Each little red spot starts growing. It seems to graph itself into each other as it grabs onto anything it can in the joint lining.
When looking at the last MRI it appeared I had a perfectly round mass in the image. I assumed that was a localized nodule but in fact the images show it was an area that had been effected by PVNS that had taken time growing in that one place. It was growing in other places but the doctor said that it wasn't "everywhere" like it was only a year and a half before. It seemed to grow back faster after the first surgery. But slower after the second.
I am not sure if the lack of growth had anything to do with my attempts to apply frankincense diligently, which I admit I'm not all that proficient at.
Still no information has been found as to the cause of PVNS or much less a cure at this point.
When looking at the last MRI it appeared I had a perfectly round mass in the image. I assumed that was a localized nodule but in fact the images show it was an area that had been effected by PVNS that had taken time growing in that one place. It was growing in other places but the doctor said that it wasn't "everywhere" like it was only a year and a half before. It seemed to grow back faster after the first surgery. But slower after the second.
I am not sure if the lack of growth had anything to do with my attempts to apply frankincense diligently, which I admit I'm not all that proficient at.
Still no information has been found as to the cause of PVNS or much less a cure at this point.
Sunday, September 9, 2018
Physical Therapy For The Knee
Since I have routine knee surgeries I am on a roller coaster of getting worse, to getting better, to back to worse. The worst being the surgery. Then after I'm on my way back to being mobile. Then my condition slowly cripples me again. Making it difficult to walk or bend my knee without pain or discomfort in some way.
Because of the medical system I depend on I simply can't afford to see a professional physical therapist. And it wouldn't matter much anyways because by the time I get back to optimum health I'm deteriorating again. So I do it my way each time. Mostly because I know what I'm doing. I trust what my body is and is not willing to do. I have just naturally learned over the years and multiple surgeries, what works and what does not.
1. Yoga - In the mornings, most mornings, I have created a routine that I can do daily. It actually starts with meditation and then I start in on the moves. I try to press myself the most at childs pose. That is the most difficult one for me currently. I end with planking for a count of 10. I am working on increasing that count. Then I lay on my back and pull my knees close to my chest and then stretch them out and pull my ankles toward my chest. Then I lay for the final savasana.
2. Bicycle - After my yoga I get to the gym and get on a bicycle with a moderate setting that changes resistance so I'm constantly shifting between pedaling slow to pedaling fast so that my heart rate doesn't go too fast. I usually ride for 25 minutes. I usually cover at least 6 miles in that time.
3. Swim - If I didn't get my bicycle time in I will get into the pool and get in a position where I'm bending both legs and kicking at the knee. I'm not doing laps like everyone else as I'm trying to kick my legs at the knee as much as possible. Usually I'm in an upright position with my legs bent like I'm sitting in a chair and kicking my legs at the knee back and forth while using my arms to keep me upright.
That is the extent of what I'm willing to do. Every now and then I might add some weights but I don't typically do any kind of lunges because I have long legs and it's very difficult to get into a lunge without hurting my knee so I just don't.
Because of the medical system I depend on I simply can't afford to see a professional physical therapist. And it wouldn't matter much anyways because by the time I get back to optimum health I'm deteriorating again. So I do it my way each time. Mostly because I know what I'm doing. I trust what my body is and is not willing to do. I have just naturally learned over the years and multiple surgeries, what works and what does not.
1. Yoga - In the mornings, most mornings, I have created a routine that I can do daily. It actually starts with meditation and then I start in on the moves. I try to press myself the most at childs pose. That is the most difficult one for me currently. I end with planking for a count of 10. I am working on increasing that count. Then I lay on my back and pull my knees close to my chest and then stretch them out and pull my ankles toward my chest. Then I lay for the final savasana.
2. Bicycle - After my yoga I get to the gym and get on a bicycle with a moderate setting that changes resistance so I'm constantly shifting between pedaling slow to pedaling fast so that my heart rate doesn't go too fast. I usually ride for 25 minutes. I usually cover at least 6 miles in that time.
3. Swim - If I didn't get my bicycle time in I will get into the pool and get in a position where I'm bending both legs and kicking at the knee. I'm not doing laps like everyone else as I'm trying to kick my legs at the knee as much as possible. Usually I'm in an upright position with my legs bent like I'm sitting in a chair and kicking my legs at the knee back and forth while using my arms to keep me upright.
That is the extent of what I'm willing to do. Every now and then I might add some weights but I don't typically do any kind of lunges because I have long legs and it's very difficult to get into a lunge without hurting my knee so I just don't.
Sunday, August 5, 2018
I Can't Bend My Knee
It's been almost 4 months since my surgery and I suspect the cauterization of the lining of my knee is the cause for my delayed improvement. That and not having insurance to cover the cost of physical therapy. So I'm recovering slower than I should. However, I continue to stretch and work on my knee such as riding the bicycle as much as possible. Which in my head is daily for 25 minutes but usually works out to be more like 3 to 5 times a week. I am also trying to stay committed to doing yoga on a daily basis but a week ago I did a yoga workshop and they did a lot of child posing. That consists of sitting on your heels while your knees touch the ground and leaning all the way forward with your arms in front of you, palms on the ground. We stayed in that pose for quite a while. Before we started posing, the instructor gave us intention cards. I picked a purple one. It said, "Let go of your fear". I was fearing leaning too far back so I instead focused on breathing and allowed myself to stretch even though my knee was not having it. I kept thinking past the resistance and let it stretch as much as it could or would. Oh but I paid for it dearly. For the rest of the day I felt like it was swelling up. But I spent a lot of time in the river so I think the coolness of the river kept the swelling from getting out of control. Then a few days later I went to a deprivation float place where they fill a tub with Epsom salts. I made sure I submerged my knee in the salt waters as much as possible which defeats the purpose of the float because I should be focused on other things than keeping a leg down. That's not really floating. But it did what I meant it for, took the swelling away. No more swelling but still can't bend the knee all the way. I know it will take time, I will get there. I just need more child posing.
Saturday, May 26, 2018
Insurance Revoked
Just before my final post op appointment I was notified that my insurance had lapsed. That cannot be. I just received my insurance cards for the year a few months ago. I called the insurance company and they said that because I am on state assisted care (mainly because I am a single mother with full custody of two children and have qualified with my children until now) and they said that I needed to call the state. I call the state and they claim to have sent a letter on March 1st saying they needed to review my account and get an updated proof of income. I just happened to have the good fortune of being bombarded by new business in the last 3 months and one of my children became an adult so I was done. Thankfully my youngest still gets insurance through the state but now I'm completely without. The doctors office said they could keep me on the schedule but for someone to check on my knee would cost me $500 out of pocket. Ridiculous. I'm not paying a doctor $500 for him to say whether or not I need physical therapy which also now is not covered. So I'm now on the hunt for a new insurance plan that I will have co-pays and out of pocket expenses where I haven't before. I have had the good fortune of having a plan that covers all of my expenses until now. And what is most amazing is the crazy timing of deciding to have the surgery on a whim just before the insurance lapsed. I am beyond lucky for that. And when talking to my doctor they said that the PVNS was not as bad as last time. Which is strange as it felt like it was getting worse. The popping was constant. But the pictures confirmed there was only one area of my knee where it was really concentrated. I'm sure that was the source of why my knee was always popping. On the MRI it looked like an actual mass but it was all cozy in one spot. The doctor said the previous surgery had it all up and down my knee. He said he is nervous because I have the kind that likes to come back. He cauterized it this time so I'm hoping that I will be able to go for a long time without another surgery. Now that I can expect expenses that will change the way I treat myself. I will likely go a lot longer and endure a lot more discomfort before going under the knife again.
Monday, April 30, 2018
Post-Op Swelling Hell
I had my 2 week post op over a week ago. Nurse Rachel was not impressed. She said I need to make her look good at my next visit by having a visible knee cap. My knee was swollen to about the size of a cantaloupe. And boy did it hurt. Rachel said that my knee should not be that swollen. And I thought back to my other surgeries and the swelling that I had. I told Rachel this one felt way better and I realized my last surgery I messed up by taking the wrap off my leg so that I didn't have anything too tight while I slept. But that left me with severe bruising all up and down my leg. It was horrible. At least this time I kept it wrapped and minimal bruising in comparison.
Where did I go wrong? Elevation. I probably never in the 2 weeks of recovery kept my knee above my heart properly. It was usually parallel. So now I'm tasked with raising it straight up in the air and trying to rub the swelling out of it. Rachel said to lay up against a wall and tap my heel. I find the sensation of shaking my leg helpful.
Then I was talking to another doctor friend of mine about my new remedy and he said "make sure to push the swelling toward your foot while doing that." Huh? I would think I want it to drain down into my heart not up to my toes. What good would that do? Then he realized we were talking about me laying down and said, "Yes, when sitting push toward your foot. When laying down pull toward your heart." Now I'm so confused I just rub in circles.
I finally got back to the gym 18 days after surgery and rode a stationary bicycle for 10 minutes. Yesterday I made it to 14. Today I finished 20 minutes and nearly made it 5 miles. But I kept it on an easy setting as Rachel warned me about adding any resistance. Feeling better by the day and my knee only looks like a citrus instead of a melon.
Where did I go wrong? Elevation. I probably never in the 2 weeks of recovery kept my knee above my heart properly. It was usually parallel. So now I'm tasked with raising it straight up in the air and trying to rub the swelling out of it. Rachel said to lay up against a wall and tap my heel. I find the sensation of shaking my leg helpful.
Then I was talking to another doctor friend of mine about my new remedy and he said "make sure to push the swelling toward your foot while doing that." Huh? I would think I want it to drain down into my heart not up to my toes. What good would that do? Then he realized we were talking about me laying down and said, "Yes, when sitting push toward your foot. When laying down pull toward your heart." Now I'm so confused I just rub in circles.
I finally got back to the gym 18 days after surgery and rode a stationary bicycle for 10 minutes. Yesterday I made it to 14. Today I finished 20 minutes and nearly made it 5 miles. But I kept it on an easy setting as Rachel warned me about adding any resistance. Feeling better by the day and my knee only looks like a citrus instead of a melon.
Wednesday, April 11, 2018
Healing Hands
Had my third arthroscopic synovectomy on Monday. The surgeon prepared me that I would be in a lot of pain. That he was going to cauterize the areas that had been effected by PVNS. I assumed it was one localized tumor that we were dealing with. He said he didn't believe so. He expected to poke more holes than before to access the knee. I was expecting the worst pain ever. However, because of all the hype I have been feeling great. The pressure from the wrap on my leg that I have to keep on for another day has evenly displaced all pain. It just feels like pressure. I'm feeling more sore from laying around than I am in my leg. Only a few shooting pains or throbbings but that isn't unusual with just having PVNS anyways. I have been getting by on one Oxycontin pill a day. I've countered it's use by puffing on an Indica THC oil cartridge through a vaping pen. And a tincture with THC I got from a witch. She gave me a healing massage with hot stones before the surgery and I traded a few boxes of girl scout cookies for the tincture. Witches are the best. Whether they be considered shamans or healers. They are inherently the best people to put their hands on you when you are looking for healing. Some find priests or whomever the head of your worship is, that by praying with them and having them put their hands on you before a surgery is what they need to speedily recover. It's that boost of good energy you pull from another that is where it's at. I truly believe that. Also, my surgeon extended his hand in a warm welcome when I saw him and I drew in his warmth to soothe my nerves and I believe that helped me as well. To be too stressed before surgery is not helpful.
Tuesday, April 3, 2018
Pre-Op Fun Times
With PVNS you must have 2 things. A sense of humor and the ability to laugh. Also I find it easier to simply deny there is anything wrong with me. Including denying that I'm in pain.
Last week I went in for my pre-op appointment. UW Medical is a teaching hospital so you deal with a team for your care. I have 5 people on my team. I'm getting to know them pretty well since I see them so often. My surgeon Chris says "we can be friends but I don't want to see you". Essentially saying he would rather fix my problem so I don't have to come back. And we laugh.
One of the nurses. I always forget her name. I will refer to her as Rachel. She speaks slowly and is a careful listener as I know I get extremely chatty when I'm nervous. She nods and smiles with her huge sunflower eyes. I told her, "Rachel! I got a wheelchair. It was at a thrift store. I scored it for only $13 when new ones are around $60!" She responds, "Holly! I do NOT want you sitting around for long periods of time!", I smile at her and say, "No Rachel, it's one of those kind that also acts like a walker. I can put a basket on the seat and get things to eat from the kitchen instead of eating only that I can fit in the pockets of my robe when I'm on crutches. I got the idea from another PVNS sufferer." She agrees, "Good idea Holly!"
My next nurse who I will call Rashan because he has a name I really can't remember and in my head it's Zoltar but I know that is from the movie Big and not his real name. Rashan is in charge of giving me all of the information and directions to be prepared for the day of surgery. He hands me a big folder full of all the papers he has highlighted as he tells me, "Someone will call you the day before to let you know what time..." I know all of this already so I'm nodding and finally say, "Rashan! You are like my terrible travel agent and you are sending me off to a two week horrible vacation." He laughs and I continue, "If you can go ahead and arrange for the surgery to be in a cabana on the beach and afterwards bring me margaritas every hour." He looks disturbed and replies, "Well the only problem is that tropical climates breed disease.." I cut him off, "Rashan! Don't kill my dream! Ok, then we do it on a local beach and you will need to bring portable heaters and paint tarps to look like blue sky so you can hang them over my head. And you should let me try a hammock because that could be good at raising my leg." He laughs. We giggle about my parting gifts being 2 bars of soap I take with me to prepare for my surgery next week.
Last week I went in for my pre-op appointment. UW Medical is a teaching hospital so you deal with a team for your care. I have 5 people on my team. I'm getting to know them pretty well since I see them so often. My surgeon Chris says "we can be friends but I don't want to see you". Essentially saying he would rather fix my problem so I don't have to come back. And we laugh.
One of the nurses. I always forget her name. I will refer to her as Rachel. She speaks slowly and is a careful listener as I know I get extremely chatty when I'm nervous. She nods and smiles with her huge sunflower eyes. I told her, "Rachel! I got a wheelchair. It was at a thrift store. I scored it for only $13 when new ones are around $60!" She responds, "Holly! I do NOT want you sitting around for long periods of time!", I smile at her and say, "No Rachel, it's one of those kind that also acts like a walker. I can put a basket on the seat and get things to eat from the kitchen instead of eating only that I can fit in the pockets of my robe when I'm on crutches. I got the idea from another PVNS sufferer." She agrees, "Good idea Holly!"
My next nurse who I will call Rashan because he has a name I really can't remember and in my head it's Zoltar but I know that is from the movie Big and not his real name. Rashan is in charge of giving me all of the information and directions to be prepared for the day of surgery. He hands me a big folder full of all the papers he has highlighted as he tells me, "Someone will call you the day before to let you know what time..." I know all of this already so I'm nodding and finally say, "Rashan! You are like my terrible travel agent and you are sending me off to a two week horrible vacation." He laughs and I continue, "If you can go ahead and arrange for the surgery to be in a cabana on the beach and afterwards bring me margaritas every hour." He looks disturbed and replies, "Well the only problem is that tropical climates breed disease.." I cut him off, "Rashan! Don't kill my dream! Ok, then we do it on a local beach and you will need to bring portable heaters and paint tarps to look like blue sky so you can hang them over my head. And you should let me try a hammock because that could be good at raising my leg." He laughs. We giggle about my parting gifts being 2 bars of soap I take with me to prepare for my surgery next week.
Monday, March 5, 2018
Surgery Number 3
I feel like I'm booking myself a terrible vacation. One where I'm forced to be sedentary for a few weeks. Can't we do surgery on the beach and you can just leave me in the cabana to recover? I think a hammock would be good for keeping my leg straight and elevated. Oh well.
This time the surgeon is going to kill some of the good cells to see if that keeps the PVNS from returning ever. By the looks of where the tumor regenerates, I suspect he means my tibia. I have a feeling that is going to be super painful. I say bring it. If it does the trick of keeping this nasty tenant I can't evict out of my knee then so be it.
This will be my third surgery in 4 years. At this point the tumor is wedged between my leg bones and I can definitely feel the shooting pain from the pressure. It feels like someone is trying to pry my leg bones apart. I definitely have a limp but I pull it off pretty well so far. Nobody can tell and are shocked when I tell them I'm about to have another surgery.
I went to Canada a few weeks ago. Cannabis isn't quite legal in Vancouver BC so I had to leave my THC at home. After about 24 hours I was feeling the pain in all of it's unmuted splendor. I had my CBD cream and kept rubbing that all over my knee. It helps but the combination is what really helps. Luckily I was only gone for 3 days.
This image is a side view of my right knee. My knee cap is pointed to the left of the image. You can see where the placed a white circular sticker the size of a dime under my knee cap. And just behind it where the tibia and the femur meet is the tumor which appears to be just slightly larger than the sticker in the image but now feels like it's past the size of a nickel.
At this point I'm having difficulty with getting my knee to bend and don't quite have a full range of motion. My knee pops often and I have shooting pains going up and down my leg. Deep aches or pulsating pains in different parts of my knee. I have a strange sensation on my foot where it feels heavy or that there is a strange pressure at the bottom of the ball of my foot.
I was going to wait until October to have my next surgery but a series of personal events made me reconsider. So, last week I called my surgeons office and let them know I'm ready. Today I booked my terrible vacation, I mean surgery, for April 9th.
This time the surgeon is going to kill some of the good cells to see if that keeps the PVNS from returning ever. By the looks of where the tumor regenerates, I suspect he means my tibia. I have a feeling that is going to be super painful. I say bring it. If it does the trick of keeping this nasty tenant I can't evict out of my knee then so be it.
This will be my third surgery in 4 years. At this point the tumor is wedged between my leg bones and I can definitely feel the shooting pain from the pressure. It feels like someone is trying to pry my leg bones apart. I definitely have a limp but I pull it off pretty well so far. Nobody can tell and are shocked when I tell them I'm about to have another surgery.
I went to Canada a few weeks ago. Cannabis isn't quite legal in Vancouver BC so I had to leave my THC at home. After about 24 hours I was feeling the pain in all of it's unmuted splendor. I had my CBD cream and kept rubbing that all over my knee. It helps but the combination is what really helps. Luckily I was only gone for 3 days.
This image is a side view of my right knee. My knee cap is pointed to the left of the image. You can see where the placed a white circular sticker the size of a dime under my knee cap. And just behind it where the tibia and the femur meet is the tumor which appears to be just slightly larger than the sticker in the image but now feels like it's past the size of a nickel.
At this point I'm having difficulty with getting my knee to bend and don't quite have a full range of motion. My knee pops often and I have shooting pains going up and down my leg. Deep aches or pulsating pains in different parts of my knee. I have a strange sensation on my foot where it feels heavy or that there is a strange pressure at the bottom of the ball of my foot.
I was going to wait until October to have my next surgery but a series of personal events made me reconsider. So, last week I called my surgeons office and let them know I'm ready. Today I booked my terrible vacation, I mean surgery, for April 9th.
Thursday, January 18, 2018
TGCT vs PVNS
When I was diagnosed nearly 5 years ago my doctor called my bulging knee a case of "PVNS", Pigmented Villonodular Synovitis. That is what I started researching. What is this strange substance in my knee? As I've seen several doctors over the years, they have indicated that different joints might carry a different name for the same substance if it's residing in a finger or other joint with synovial linings. But for 5 years I've been calling it PVNS with a futile attempt to educate others on what PVNS is and how I suffer. It's not so easy to explain and people always ask me, "what's that thing with your knee called again?" Even with the easier remembered acronym it's not easy to remember. However, in the last year a medical group in Europe have been reaching out to sufferers of PVNS and calling it TGCT, Tenosynovial Giant Cell Tumor. I asked them why the name change? They told me that it's what the World Health Organization recognizes as the true name of the disorder. I have argued with these northern Europeans at length that it is confusing to add names to something that is still so rare. They want me to participate in their studies but I have a really hard time saying I have TGCT. There should only be one name! But maybe it's more complex than that.
If you talk to American doctors about Giant Cell Tumors. They relate those to bones, not joints. And just like with PVNS, most cases are found in the knee. But is PVNS really a giant cell tumor? The answer is yes. According to research I have done and doctors who have released information, PVNS falls under the umbrella of TGCT. So the Europeans are correct in calling it TGCT. But they really should recognize the different variations of TGCT as PVNS really tends to effect the lower extremities such as the knees, hips, and ankles. In a more recent publication a doctor had refereced TGCT of the tendon sheath saying,
"Histochemical evidence shows that the mononuclear cells and giant cells present in these lesions resemble osteoclasts, [14, 15] and this resemblance suggests a bone marrow–derived monocyte/macrophage lineage for these tumors. Polymerase chain reaction (PCR) assays have shown that giant cell tumors of the tendon sheath are polyclonal proliferations, [16] which suggests that these masses are nonneoplastic proliferations, if one accepts the premise that a population of cells forming a tumorous mass must show clonality to be classified as a neoplasm."
Recurrences were all over the place. Doctors reporting anywhere from a 9% to a 44% recurrance after surgery. Those numbers don't show any concept of what sufferers can expect. In fact there really hasn't been a new survey done on how many people have PVNS since 1980. The biggest concern from doctors is that TGCT or PVNS will cause degenerative bone disease. And as anyone with a record of multiple surgeries knows that eventually you do need to replace the affected joint.
The idea of radiotherapy is popular amongst some doctors and there are clinical trials but to date a surgical procedure is the favorite to remove the lesions growing in the joint. There is no cure and the disease is still rare enough that many doctors are not aware of it. Especially when there are multiple names. So although PVNS does fall under the category of TGCT it would be like saying instead of having cancer you have TGCT. People would be confused if suddenly TGCT was the way to describe having cancer. And although there are very few cases of PVNS being or becoming malignant it's safe to say that PVNS is commonly benign. I still am not interested in calling my PVNS anything other than PVNS since I don't want to give the impression that it could be cancer.
If you talk to American doctors about Giant Cell Tumors. They relate those to bones, not joints. And just like with PVNS, most cases are found in the knee. But is PVNS really a giant cell tumor? The answer is yes. According to research I have done and doctors who have released information, PVNS falls under the umbrella of TGCT. So the Europeans are correct in calling it TGCT. But they really should recognize the different variations of TGCT as PVNS really tends to effect the lower extremities such as the knees, hips, and ankles. In a more recent publication a doctor had refereced TGCT of the tendon sheath saying,
"Histochemical evidence shows that the mononuclear cells and giant cells present in these lesions resemble osteoclasts, [14, 15] and this resemblance suggests a bone marrow–derived monocyte/macrophage lineage for these tumors. Polymerase chain reaction (PCR) assays have shown that giant cell tumors of the tendon sheath are polyclonal proliferations, [16] which suggests that these masses are nonneoplastic proliferations, if one accepts the premise that a population of cells forming a tumorous mass must show clonality to be classified as a neoplasm."
Recurrences were all over the place. Doctors reporting anywhere from a 9% to a 44% recurrance after surgery. Those numbers don't show any concept of what sufferers can expect. In fact there really hasn't been a new survey done on how many people have PVNS since 1980. The biggest concern from doctors is that TGCT or PVNS will cause degenerative bone disease. And as anyone with a record of multiple surgeries knows that eventually you do need to replace the affected joint.
The idea of radiotherapy is popular amongst some doctors and there are clinical trials but to date a surgical procedure is the favorite to remove the lesions growing in the joint. There is no cure and the disease is still rare enough that many doctors are not aware of it. Especially when there are multiple names. So although PVNS does fall under the category of TGCT it would be like saying instead of having cancer you have TGCT. People would be confused if suddenly TGCT was the way to describe having cancer. And although there are very few cases of PVNS being or becoming malignant it's safe to say that PVNS is commonly benign. I still am not interested in calling my PVNS anything other than PVNS since I don't want to give the impression that it could be cancer.
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