PVNS: experience and causes

Oh for those not bothered by the gory details of the surgery, when I said "drain" I mean a tube which is inserted into the joint to let the excess blood and a saline solution they pump in, flow out post-surgery. You are basically attached to a bottle with a hook which you have to carry around with you on your crutch until you're ready to be released from hospital. You can only be released after they think all the blood and fluid has come out, for me that took 1 and quarter bottles (500-750ml).

Having the drain removed is nothing to worry about. It looks bad, but it's only a small pipe and doesn't hurt when they pull it out. You're left with a small fairly painless wound (small 2mm hole) which quickly closes up under a dressing.

For the main wound: if you're having open surgery on knee, as I had..the wound is a vertical incision measuring about 9-10 inches right over the knee joint on front...it's closed with metal staples which are not too pleasant .You can feel them pulling if you move in the wrong way or strain yourself, so be careful. The staples come out 3 weeks after surgery.

NOTE: Don't be surprised if the surgeon leaves in any tumours you might have on the back of the knee. That's normal procedure with PVNS in open surgery, as the surgery is so traumatic to the joint/body, they prefer to minimise that trauma and amount of surgery to joint... if they opened back AND front, it would be much harder to recover.. so they generally remove the tumours as a separate (later) surgical procedure, once you have had the joint lining part done. It's normally done that way around, because the tumours are benign and don't really affect mobility as much as the lining overgrowth problem. So that's the preferred way... knee lining removal, then tumours later. It sucks having to go through two lots of surgery, but it's the best practical way for recovery.

It was 4 weeks yesterday since my operation and I am definately on the mend. Stopped using crutches last Monday however wasnt using them at home since 2 weeks post-op. I also live alone but seemed to manage fine (only using one crutch so i could carry food/drink). Physiotherapist told me to put as much / as little weight as I could as there was no way of damaging my knee.

I was also VERY naive about the hospital, they also told me before surgery that I may be going home that day / the next morning so hadnt prepared for the 4 day stay. I even told my Dad before surgery I would get the train home! Painkiller wise I did not take to any very well so took morphine / codine for 2 days in hospital after that just ibruprofen and paracetamol so that i was actually able to get out of bed. Haven't had to take any for a week now as rarely in pain mostly stiffness.

With regards to the injections for blood clots i had them done every day in hospital but I found them extremely painful and they left me black and blue due to the fact i don't really have any fat on my stomache. When i left the hospital they forgot to give me any injections to take home so was advised by the doctor to carry on wearing the surgical stockings instead.

I have found my recovery surprisingly good and there has rarely been times when I havent been able to get out and do things. The first week was difficult to adjust to showering / sleeping / and having to move that leg with the other foot! But since then have been out and about as I usually would and working and am now driving too. Last week my quad muscle came back to life for the first time, very achey doing exercises with it as it lost ALL strength.

As for the scar, 2 days after staples came out I was back at the doctors because the wound has re opened (only on the surface) so was back bandaged up. The scar is rarely painful except for when the nerves ping and they sometimes make me jump! Twice a day I use E45 and give the whole knee a massage and my scar is coming along really well, another couple of weeks until I can start using bio oil though. Still have a lot of swelling so may need to have it drained in the next few weeks will find out Thursday.

Hope some of this helps you Paul - you will be surprised how quickly the pain eases each day I was seeing improvement and regaining the strength to walk. And as for biopsy I never had one, I didn't even know what PVNS stood for until after the operation and in a way was better not knowing I wish I never googled it! So many sad stories and hardly any success stories. But definately staying positive for the time being. Wish you a speedy recovery.

The first MRI was three months after I started have discomfort and swelling, and MRI showed swelling but no tears or other injuries. After three more months they did an x-ray and drained my knee with no luck either draining or with a diagnosis of any problems other than the swelling. So they gave me a cortisone shot, no help. I went home in more pain then I've ever experienced, and my knee was about the size of a basketball.

I was afraid to go back after that experience and was so frustrated with the lack of any diagnosis, I gave up on the doctors and started doing therapy exercises in water and reduced my activities substantially . This went no where so I went back to the doctor 1 year after symptoms started, requesting that we figure it out, because I couldn't continue to not do anything and there was definitely something wrong. They drained again and tested-nothing, cortisone shot-nothing, Ultrasound-nothing, blood work-nothing, so the sent me to a rheumatoid arthritis specialist .

The specialist gave the diagnosis of PVNS mostly by readying all of the tests, and now they have scheduled my surgery without seeing the second MRI results. They are also saying that it is a simple procedure and I will be out the same morning. After reading the above, I'm seriously scared but at the same time I can not move on this knee and it is starting to effect my hip and strength in my leg.

cracking; popping, it was giving out and a sudden pinch (like a pinched nerve in your neck); both of my knees ache often. A few years ago it seemed like the constant ache was only in the winter time and my mobility has lessened over the past 4-5 years. If I stop moving it is very difficult to get the legs to move again. I had that same popping and pinch one day going up the stairs; the next two days my knee was the size of a grapefruit; by the 4th day I could not straighten or bend my knee. I went for x-rays and than to an orthopedic doctor. The X-rays showed very little Arthritis; but there was a cell mass on the left side of my knee cap; the MRI showed hemosiderin (iron) build-up inside the joint but the doctors say that when I bent my knee the mass would interfere with the tracking of my kneecap. june 23rd they cut along the outside of my knee to remove the mass for biopsy. It came back as diffused PVNS. The orthopedic surgeon did not do anything else to my knee other than remove the mass because they were not sure what it was. It has been about a month and I can not squat or kneel; which my job will require me to do, my knee gets hot; burns; gives out; snaps and catches still. Nothing has changed since before the mass removal. The mass

was not the reason I went; it was just an accidental find. I go back to the surgeon on Tuesday the 20th, I don't know if I should have a

synovectomy (removal of the synovial membrane) or just leave the knee with minimal

swelling,pain and hope that it doesnt progress in a short time period.

What are the chances of this progressing quickly and should I have the synovectomy? The surgeons had said that with the draining of the synovial fluid, the joint expands and fills

the whole cavity with fluid and eventually the arthritis would be severe enough that I would need a knee replacement. Would a synovectomy prolong that process? I have to make a

decision and I am not sure what the right decision is.

To respond to your points and questions:

>synovectomy (removal of the synovial membrane) or just leave the knee with minimal

The normal treatment of advanced PVNS is synovectomy by open surgery, to remove all the affected joint tissue affected, and for diffused, possibly radiotherapy to kill any remaining affected cells to reduce the risk of it returning.

PVNS as you probably know has a high risk of returning (especially diffused PVNS)..about 50%. If any

affected cells remain, there's a chance the entire synovial membrane will be affected again in time.

>swelling,pain and hope that it doesnt progress in a short time period.

When I had my biopsy done, they removed a lot of fluid and some tissue sample and that stopped the pain. I got a lot of movement back and was even able to go jogging again. But doing that, and intensive physical movement, seem to aggravate the condition. Pretty soon (within 2 months) I was back to where I started, with burning pain, worse swelling and limited joint movement.

>What are the chances of this progressing quickly and should I have the synovectomy? The surgeons

>had said that with the draining of the synovial fluid, the joint expands and fills

That's the $1000 question Katie, and we just don't know enough about this disease really to give a definitive answer about how quickly if will return, if at all. I'm not a doctor, so this is going by just my own research and reading of many sufferers experiences around the world, if I'm brutally honest, there is a high risk of it coming back fairly quickly after surgery, if you're unlucky to be in that 50%. I've read many reports of patients who had it return within a year or so, and required repeated surgeries. It's a daunting thought.

>the whole cavity with fluid and eventually the arthritis would be severe enough that I would need a knee r>eplacement. Would a synovectomy prolong that process? I have to make a

>

>decision and I am not sure what the right decision is.

I faced the same decision you are, in those 2 months after my biopsy. The surgeon advised me it was not uncommon for the symptoms to ease and the disease to slow down after that procedure, and that I might want to delay surgery for as long as possible, or just get it over with right away. I decided to delay, because I wasn't feeling any discomfort and had mobility back..but within 2 months as I said, it was back, worse than before..so I had no choice but to go ahead with surgery.

Your age, must surely come into this decision too, as you mentioned a complete knee joint replacement. My understanding is, surgeons don't normally do that unless you're in your 50's or older..because they only last 20 years or less, and need replacing and there can be complications/risks involved with repeated replacements. In your case though, maybe it's the best option even if you are younger.

I think you need to discuss it with your consultant more fully and decide what's best for you and your

circumstances. If you're in constant pain and have reduced mobility still, I don't think you can really manage like that for years on heavy duty painkillers and suffering adjustments/major limitations on your lifestyle. So perhaps you should have knee replacement if its offered, or else go ahead with the synovectomy and radiotherapy and hope for the best.

It's taken me almost 2 months to recover from my surgery for localised PVNS in the left knee. I'm now walking without any support, pain-free, but I can't run and the knee mobility is not 100% and is still weak. I still have tumors from the PVNS at the back of the knee, but the surgeon said he wouldn't remove those until later.

A quick update on my recovery progress for this interested and following this thread about my localised-PVNS of the knee.

I've just got back today from my 6 week (actually turned out to be 2 months!) follow-up consultation at the Birmingham Royal Orthopedic Hospital. They were very pleased with the joint and results of 6 weeks of physiotherapy. I'm now completely off painkillers as I no longer feel any pain. I'm able to walk without a stick and even have begun cycling again (at the recommendation of my physiotherapist) to further strengthen the knee muscles. The only thing I can't do still is jogging. My knee just isn't strong enough yet and make take many months I'm told.

Some interesting findings and discussion took place a the follow-up consultation today which interest some..

I asked when the surgeons would be looking to remove the tumour(s) I still have at the back of my affected knee. I was told, they probably would not be doing it! When I asked if that posed any risk of leaving them, in terms of them growing larger, affecting the joint bone, or the affected cells spreading to the knee lining again, their reply was this:

With tumours in localised PVNS, it's generally accepted that unless they're causing the patient pain, or mobility problems, they're best left alone. The risk of the cells spreading into the lining and sparking a new cycle of PVNS is GREATER if surgery if performed on the removed the tumours, and it's just a risk that surgeons prefer not to take, so long as the patient remains stable and the tumours don't increase in size etc. Instead, the approach is regular check-ups every 4-6 months, to monitor the condition and access the need for treatment. It would be at least a year after synovectomy surgery, before removing tumours would even be considered, if it became necessary. This I found rather interesting!

The second question I put to them was radiotherapy. I asked would I be needing it, and would it lessen the risk of PVNS returning, particularly in view of the tumours being left for a year or longer.

The answer was surprising again. Radiotherapy is not recommended for PVNS which can be treated with surgery and is usually only a last resort option after surgery options have been exhausted or proved ineffective. They explained that radiotherapy carries its own risks, particularly of tissue scarring. which can result in thick tight skin over the treated areas, and sometimes nerve damage that sometimes never returns to normal.

Speaking of nerve damage, I mentioned that half my knee was still totally numb with no sensation or feeling and I asked whether this would correct itself in time. The answer was "maybe, sometimes it does, but often it doesn't". The reason there is numbness down the left-side of the knee is because that is where a large nerve normally resides which was removed during the synovectomy surgery. I was told I might get partial nerve sensation returning, but that my knee on that side might not feel normal again and may have a "rubber-like" feel when pressed, but that lighter brushing or stimulation of the skin would be felt more normally.

Finally, I assured that the outlook was good with my localised PVNS, and that the doctors were confident it wouldn't return, but would need to monitor me regularly from now on, to check for any signs of recurrence. If I experienced any pain returning, joint mobility issues etc, I was advised to contact the hospital.

My next consultation review is set for 3 months time, just before Christmas.

As far as the physiotherapy goes, I must confess, I have been a bit lazy and haven't been doing it the exercises very much (which is very naughty and silly I know, but I am fairly active in other ways which compensates somewhat).

My physiotherapist has trusted me to do the exercises at home and has put together a special routine of progressively more challenging movement exercises designed to strengthen the knee joint and improve the range of movement. The latest exercise involved supporting myself between two chairs, while keeping my good leg out straight behind me, and bending my bad leg down as close to touching the floor as possible! This is still a very difficult exercise, but I've been told to keep pushing it further each day.

Hope some of this is interesting or perhaps even useful to anyone undergoing surgery or facing surgery for PVNS. It's not too bad, although difficult for the first few weeks, recovery can be fairly quick and strength and mobility quite soon within 6 weeks.

I have been diagnosed with a PVNS deep in the middle of my knee, between the ACL and PCL ligaments.

Prior to a simple arthroscopic meniscus trim in 2006 I had significant pain in my knee and some swelling. I had an MRI which indicated a small mass the size of the top of my 4th finger. This did not garner any comment from any of the doctors and being ignorant or naïve I did not ask to see the report.

My Ortho, because of insurance requirements, delayed the meniscus trim for 6 weeks. So I continued with the pain and lessor swelling. After the surgery my Dr. said all the pain and swelling would be gone, and come back to see him in 6 weeks. 6 weeks later I had the same pain but the swelling had gone. Since then I have had varying bouts of pain and swelling until my PCP requested an MRI in 2010. Interestingly they identified a small mass approximately the size of the top of my 4th finger. This time I was directed to go see a specialist and they identified the lump as PVNS. Since it had not changed in size significantly they assume it is benign and it is not causing the pain I have had in my leg from groin to ankle It varies day to day. Some weeks can pass and it will be mild. Other times it handicaps my activity and the pain is moderate or above.

Two things that stand out for me. 1. this was not influencing my life until I had the meniscus trimmed. I clearly had this in my knee prior to the meniscus issue. 2. When this was discovered I was 58Yrs old--surprising because of all that I have read.

Lastly I want to thank all of you for describing your condition. I will act a lot sooner than later now that I have a clearer patient point of view!!!

Last but not least for anyone who has "tests" of any kind done make it a purpose to ask for copies of all reports!! It is the only way to help yourself manage your own health!!!!

Now I've had my surgery, my surgeon wants to monitor me regularly for a while (every 6 months) to see if the disease returns..

After you had your surgery in 2006, did the surgeon monitor you, or send you for regular MRI scans to keep an eye on the condition?

Good advice on asking for copies of reports. I wish I had done that in hindsight.

Another good piece of advice is to do your research so you're able to ask the right questions when you have the opportunity with the consultant and/or senior nurse post-surgery. There's a lot of info they don't volunteer or mention, which unless you ask, you're just left in the dark about.. like in my case, whether I'd have further surgery to remove the tumours, or whether I'd need radiotherapy on them etc. It was never mentioned until I brought those subjects up.