Two weeks ago, it was simply a sore elbow which I assumed came from all the hard training I’ve been doing. Two days ago I was at Sinai Hospital in Baltimore having a gruesome tangerine sized tumor removed from my right elbow. Otherwise known as pigmented villonodular synovitis (PVNS).
It took 5 visits to physicians and orthopedists to figure out that the large black mass under my right bicep was a benign tumor; a tumor that had apparently been there for quite a few years.
As it turns out, it’s been there long enough to eat a nice big hole in my humerus bone as well. Not good. I was also informed that my elbow had more arthritis in it than all the Golden Girls combined…
When the specialist, Dr. A, at Sinai told me that surgery was really my only option, I was disheartened to say the least. I have never had surgery, had a broken bone, or even been in a hospital bed.
Fortunately, we found it before it grew even larger and severely and permanently restricted the use of my elbow.
The Surgery
This doesn’t do it justice. It was so swelled up and inflamed. Nasty.
After a 3 hour wait pre-surgery, I was carted away to the OR. One oxygen mask and three breaths later I was out cold.
The surgery was a success and although there is almost a 100% chance that the PVNS will return, it’s gone for now. And after coming back down off the anesthesia Tuesday evening, it’s been a whirlwind of various pains, fevers, uncontrollable shakes and not much sleep.
But I shouldn’t complain. I like to, but I shouldn’t. And over the past two and a half days of lying around in a semi-conscious state, I’ve done some thinking. I’ve thought about my life and how lucky I am to be where I am and have what I have.
Among my thoughts, here are 5 things I learned about myself:
1) I’m very afraid of dying.
The thought of dying itself doesn’t scare me as much as the thought of leaving my daughters without a father and knowing how it would affect them. I want nothing more than to watch them grow up and when I’m made to sign a waiver that states there is a chance of death, I was a bit freaked out. Fortunately, I had my girlfriend by my side who was the voice of reason and calmed me down.
2) I am not invincible.
This one hurt. Honestly. It sounds ridiculous but I always sort of considered myself to be like Bruce Willis in Unbreakable. I have managed to escape all forms of injury and illness for most of my life and being told I needed surgery to remove a nasty tumor made me realize I am human.
3) I have a lot more people that care about me than I thought.
From my clients, family members, and Facebook friends, I received a ton of wishes and prayers and I am very thankful for all of them. I didn’t really give much thought to the impact this had on those closest to me, but it was just as scary for them as it was for me.
4) I am incredibly grateful that I have the support of a great woman.
My girlfriend, Shenan, has been my rock throughout all of this (and since we first started dating) and hasn’t left my side. After I was divorced, I never imagined I would find someone who would care so deeply for me and it’s just an amazing feeling.
5) I’m lucky it wasn’t worse.
The doc told me straight away that if the tumor had been malignant, I would have already been dead. Reassuring. I was operated on in the cancer unit of Sinai Hospital and the fact that I only had to have elbow surgery puts me in a far better position than many of the others in there. Dr. A could just as easily told me I had cancer and that would be that. But I don’t and other than being incredibly sore, I’m just fine.
Post Surgery
The good news is that I was told that I only needed to stop exercising for a few weeks. That seems highly unlikely however given the pain, but we shall see.
I hope to be back at it as soon as possible and will then have to deal with my other injury….
Dude! Sorry to hear about your unexpected surgery, but it’s awesome that it was totally benign and that they took care of it as quickly and as easily as they did! Well, I’m sure the “easily” doesn’t feel so easy at the moment, but it’ll get better.
Like you, I’d never been overnight in a hospital or broken any bones or anything until some stupid little out-of-the-blue localized infection required immediate surgery about three years ago. Fortunately it was a simple procedure, but the doctors even laughed a little bit as they told me what kind of discomfort I could expect for a couple of weeks. The brief discomfort, as with your malady, certainly paled in comparison to the other options!
Best wishes for a prompt recovery. Now you’ll have even more material to write about that’s pertinent to “old guys,” like how to get back to it after unexpected physical setbacks!
Thanks David. It really freaked me out and I never thought something like this would ever happen to me. I’m just glad it wasn’t worse.
Be well Steve and rest up. Glad to hear that you were well taken care of. I’ve had a few hospital stays and they all suck, so hopefully you are recovering at home. Take care and don’t rush your next bit of content – we’ll be here and understand.
I appreciate that, Joe. The hospital stay was alright, it’s been the pain and discomfort I’ve had at home. Plus, I’m kind of a pussy when it comes to handling pain so that makes it worse!
Steve,
I am sorry to hear about your surgery but glad to hear that it wasn’t any worse. Thank you for sharing your experience. Your article was inspiring.
Thanks so much Ron, I’m glad you found it inspiring. I should be back at 100% pretty soon!
I too have PVNS of my right elbow. Mine was diagnosed after it locked and caused extreme pain. It took months before it was diagnosed, with every horrible needle poking test into the joint you can imagine. I have never cried so much. Really was a difficult time. Eventually after an MRI in which it was clear I had a PVNS Tumour in the elbow joint, they finally sent me to an Orthopedic Oncologist. He had me in surgery within a few weeks and removed the synovial joint along with the tumour.
A few years later it grew back. And yes…second surgery. He told me I should wait as long as possible for my next surgery if and when its needed. That was 4 years ago…and tho I have enjoyed almost normal movement….its back again and I am now experiencing a lot of nerve pain down the arm and into the hand. I am waiting on a referral but I will be back in my surgeons office soon…no doubt. Both surgeries to date have been very painful tho I had better pain management after surgery the 2nd operation (Thank Goodness). My arm usually swells up and looks a lot like the incredible hulk! Not a good look for a vocalist in a band LOL
Since being diagnosed with this disease, I also have developed pain in other joints. No arthritis…just pain…perhaps PVNS tho the doctors can’t agree that it even spreads let alone that its in other joints. In my investigations and after speaking to a number of other sufferers plus reading a lot of medical research papers, it can and does spread to multiple joints. Doctors also said…it’s a benign condition…not true…it can turn into a malignancy and if it does spread likely to be the lungs..low percentage, and doctors will fight you on it…but medical research and past patients personal outcomes, don’t lie.
I was afraid at first, not anymore…I figure you just gotta keep your wits about you, stay as positive as you can and work through it. I have found that an alkaline diet assists in slowing growth so that’s a good thing. Also alkaline diet helps with pain.
I hope by this post, you have had relief and no recurrence. I wish I could say the same for me but I can’t. I really wish you well tho and all the best of luck for your future health.
Cheers
Keri
Wow, thanks for sharing this Keri. To be honest, I haven’t gone back to see my oncologist and have been procrastinating for a long while. Part of me wants to think everything is ok, but my elbow does hurt and I’m concerned about the tumors spreading. Thanks for the reminder..I really do need to go back soon.
I just had surgery on my left knee in Dec 2018 for diffuse pvns. Live in Louisiana but had to go to Jackson miss to a orthopedic onocologist surgeon
Drs name is Jennifer Barr a great doctor still have swelling she was not able to get all the mass out of the back of my knee at that time having another mri next week to reevaluate the knee to check to see if there was some left have had lots of pain with this but its all gonna be alright dr said this stuff does come back I hope not pray who ever out there has this to keep your spirits up
Best of luck Randy. Mine seems to be fully gone and I’m recovered so let’s hope it stays that way!
It’s a nasty condition to deal with. I was diagnosed with Pvns in my left knee about 13 years ago. Have have 3 bone grafts, several scopes and a lot of discomfort. I am day 5 post op from this latest one which was more bone grafts, synovium removal and massive scar tissue removal. The surgeon says I need a knee replacement in the next couple of years. Suppose to have another surgery in a few weeks to go in back of knee to remove Pvns but that’s a risky surgery since nerves will be exposed. I might opt out of it since I’ll have knee replaced down the road. I can say too everyone hang in there. I’m in construction and have lived with the condition for about 15 years.
Had pvns removed 6yrs ago was left with terrible pain an swelling in right ankle recently my left ankle is swollen an in pain wondering if pvns has returned am worried it’s terrible feeling
Hello, I was diagnosed about a year ago with diffuse PVNS in one knee..apparently have had it for about 6 years..the symptoms were vague in the first few years, and it was not diagnosed then. It is increasingly swollen, with stiffness that comes and goes. I am considering surgery, although I hear that the condition can come back. Also, I’m not certain of whether surgery could make it worse. There are many excellent orthopedists, but I would like to have a doctor who is familiar with this rare condition and has some experience with treating it, whether it be with medications and/or surgery. Does anyone know of a Dr. in New York State who has experience with this condition, and has treated it successfully?
I was just diagnosed with diffuse PVNS today. I started having issues with my right knee the week before Halloween. So I scheduled an appointment with my ortho. She ordered the MRI and got it last week. Today I met with another ortho and he told me about the PVNS. They have to get the authorization through the VA for surgery. He told me that when I am in my 50s I will need to get a knee replacement. So two knee replacements will be on the table for me. left and right. I can’t wait. haha
@ Linda
Memorial Sloan-Kettering Cancer Center of New York (Manhattan) is the hospital that is coming out with drugs to inhibit the expression of the CSF1R enzyme, the cause of cartilage and bone degeneration. If you haven’t found a doctor or hospital yet, that might be a place to start. Dr. Tap was doing clinical trials with the drug, but I believe those have closed. Nevertheless, a place to start. My 9 year-old daughter was diagnosed with DPVNS, so I’ve been a madwoman about finding information….
I was diagnose with PVNS in my right knee woke up to sever pain and could not walk in the beginning of Nov. 2019 ended up at the ER and they referred me to a specialist I seen them on a Tuesday had a MRI and then the specialist call by Friday and said to be the office on Monday that they needed to speak to me right away. That Monday came Dr. Kingston of Tidewater Orthopedics met with me he told me that I had PVNS and that the tumor was about 2.5 cm and would need to be removed the problem was he had no openings and that Thanksgiving was the following week so on 12/05/2019 I had surgery and he was able to remove the whole tumor at that time which grew to 5.5cm in a few short weeks. Since the surgery it has been quite painful and a lot of sleepless nights I have been doing Physical Therapy 2 days a week and following home instructions. Things that I had notice since this surgery is depression, pain and the unknown as to what to expect. I can’t stand for long lengths of time without it swelling and the pain is somewhat bothersome.Plus my body does not take medication well and I have a lot of side effects that is a pain in the butt, so I can’t take anything for pain. I was also trying to find out if people who have this work or go on disability or how long are they out of work? It seems like there is not a lot of information on this decease and that even doctors don’t really know much either. On the other hand the doctor I had seems to be knowledgeable and that he says that it could come back 25 to 50 % of the time and that I should be okay but need to learn on how to manage with it. Also I may need to go the a center that deals with this type of decease not sure what center he is talking about. This is going to be address at my next visit. So I guess my question is to anyone who can answer it can you work a normal day and how do you function.
Hi. Sorry to everyone who has suffered this disease. I had surgery on my knee for PVNS in 1973. I was 15. It was brutal. It returned 3 years later so they injected radioactive atrium and I was fine I am 62 now and will need a knee replacement due to osteo arthritis. Had a 25 year occupation as a nurse so I am grateful for that.
Wow, thanks for sharing Cathy. I just had my 2nd surgery in December and am told it will almost certainly come back again and again. I’m set to meet with the doctor to discuss radiation, but I don’t think I can go that route.