[Stardust59]

I have severe Osteoarthritis and have had a Spinal Fusion in 2005 and the disk above THAT is going out now, and now I am working with my Ortho Doc concerning BOTH my knee's. I need a Double Knee Replacement, well actually, they do 1 and then 6 months later, they do the other so you don't baby one of them. I have done everything asked of me TWICE, including Physical Therapy, I am at the end of my second set of Supartz injections and have already had a Double Knee Arthroscopy. And there is nothing left but the Double Knee Replacement They said I don't have any kneecaps left and it's just bones eating bones and there is nothing else they can do, and ALOT of BURNING arthritis, and with me being only 48, he wants to wait a couple more years.
My last visit with Pain management, I was on Fentanyl Patch 50 and Percocet 10/325 twice a day for 10 months. As with every appt he ask me how it was doing, and with every answer, I told him, IT's NOT!
So last month he took me off the Fentanyl and changed my Percocet to 3 times a day instead of 2.
However, My pain level is still high, I get NO SLEEP, hubby says I cry all night in pain. but during the day the perc's seem to work well.
I take the name brand, but am wondering How do I let him know he needs to increase the dose by just 1 more? For bedtime. I see him on Wednesday.
I read an article once and it said that patients who request additional meds are the ones they watch out for. So I have to be suttle about it. Because 10-12 hour's between doses just don't get it and he doesn't walk around on my knee's. He See's me with a cane, but he doesn't FEEL my pain. They like to hear how WE are doing, He KNOW'S I am in Physical Therapy, and walking a mile a day on my own (or was), and doing my stretches, trying to be as normal as possible. Which I read is what PM wants to know, so they know your not there just living off the drugs. but my walking a mile a day is over, so is Physical Therapy. I would give anything for some sleep. I'm so tired I try to take a nap, but THAT won't happen! I turn over and all I feel is pain and the sides of my knees touching feels like skin sliding off bone. A horrible painful feeling.
PM is a good listener, but then he writes something different. I don't want to go off the Percocets, it works during the day. I've tried: Methadone, Avinza and they didn't work, I am NOT able to take NSaids, I have severe reactions from them. Including Neurontin, Celebrex, and Lyrica.
Thanks for any help.
Stardust59

[Robert_325]

Stardust,

I am not going to tell you what to do about the pain, as I have been there with the knees and understand. I have had 5 knee operations including a bi-lateral surgery the last time ... both knees at once. I have been in a wheel chair at times in the past. I have had at least 75-85 injections of Synvisc, Hyalgen and other garbage in the knees. None of it really worked. They want to do a double knee replacement on me as well, but I have played racquetball for so many years that they want to wait for a few more years when I decide to slow down. I wear steel knee braces when I work out. I know I will hurt anyway and I enjoy playing so I keep doing it. The knees are gone anyway now.

I do have a suggestion that got me out of the wheelchair and active again. I also had to detox from loads of OC when I came out of the wheelchair. So this really helped me and might help you. When they said your knee caps were gone, they likely meant the cartilidge behind the kneecap was gone. At least that was my deal. I also had bones rubbing on bones and literally could not walk. The Ortho did what is called a bi-lateral release. They cut the kneecap loose either at the top or bottom and go behind it and actually drill a bunch of holes in the bones. The bones bleed and this dries and forms an artificial padding for the knee. Then they reconnect the knee cap. It does not last forever,but it has helped me to last until such time that they do the replacements. It took me about 4 months to rehab after the surgery, but I can run up and down stairs today where I couldn't walk before. This surgery helped me to get off the pain meds and I was taking 25-30 30mg Roxicodones a day before. You might want to ask the Ortho about this surgery and see what he says. I don't know that it will help you for sure, but it's certainly worth checking into. Hope this might help you as it did me. Good luck.

[Stardust59]

Hi Robert,
Thank You, Yes, I know what you talking about. They already did this surgery back in September and used a drill, Hammer and Chisel. They did drill several holes where the kneecaps used to be, and I came home with very heavy braces on both knee's and a walker. That was really tough to get through. But he says he doesn't want to do anything like that again, Once he got in there it was 10 times worse than he thought it would be. And now everything is back to square one.
Withdrawal is NO PICNIC, thats for sure. It's not that I REALLY WANT to raise my meds, but the way he has them set up, there is nothing in my system by the time I go to bed at night and I suffer all night long and now actually look forward to morning, so I can get a little relief. I don't cheat and take any at bedtime, I always take them as prescribed. But the timing is prescribed wrong or something. I don't know. I'm tired of suffering, but I still want to keep my own knee's as long as possible at the same time.
Sometimes I feel like I am in a box, just hitting walls and I don't know how to explain it to this guy.
Thanks,
Stardust59

[Stardust59]

Robert,
How many Arthoscopies have you had? I had 1 so far, they don't want to do another. But as I mentioned, I want to keep my own knee's as long as possible. I Love going to the beach and walking. How far apart do they do them?
Stardust59

[Robert_325]

Originally Posted by Stardust59

Robert,
How many Arthoscopies have you had? I had 1 so far, they don't want to do another. But as I mentioned, I want to keep my own knee's as long as possible. I Love going to the beach and walking. How far apart do they do them?
Stardust59

I have been a competitive athlete my entire life, even while abusing drugs. I know that is kind of stupid, but I have always been in pain. Along with the injuries I have RA and a couple other autoimmune illnesses...plus degenerative disc disease. So I have always had to deal with pain. As far as scopes go, lots of athletes get scopes done like clockwork almost annually. I had an elbow scope, two on my left knee and three on my right knee ... plus the bilateral release. It was done arthoscopically also. Don't really count that as a scope but it was kind of. That actually makes 7 altogether on the knees. The first one was back in 1983. Also had a surgery on my left foot. So I have dealt with this a long time. Only doing one scope is a crock. You can have lots of scopes as long as they still have something to work with. I have been going to doctors for 25 years for foot, elbow and knee procedures. They are just a part of my life. I would do more scopes as long as I possibly could. Rehab is not that long.

I hate to see you continue what you are doing as you are heading down a dangerous road that I have been down. We all start taking meds as prescribed, but when we go through what is happening to you and has happened to me, you are almost surely doomed to be back on this forum trying to kick pain meds. You need to do something with your knees that will make the pain bearable. You are the one who is paying, I would tell them that this has to stop and you want your goofy knees made better NOW! If it is definite that they are going to replace them then tell them to do it and get it over with. The only reason I haven't done it yet is that I still play racquetball. And I am 55. Otherwise tell them to do another scope. Your knees will not have the pain they do now. And you won't get fried on RX pain meds. Good luck.

One more suggestion. They can actually remove the knee cap entirely too if it is that bad. They connect the tendons at the bottom and top of the knee cap together. Only thing is that surgery makes it kind of tough straightening your legs completely. But if your knee cap is the only problem it would alleviate that pain. You have options though. Remember that. You don't have to be dependent on narcotics. I've been there and it sucks.

[Stardust59]

Robert,
I have been on and off drugs for about 3 years, more on than off. ortho says he wants me to try to wait until I'm 60! I told him he's NUTS if he thinks I am going to end up back in a wheechair! He says he won't wait THAT long, so I'm thinking.....Ok then, the cane is the only thing holding me up, so time to get rid of it and show him what happens without it.
I know I don't have more than a year TOPS! without the knee replacements.
I also have DDD & DJD with the OsteoArthritis. He knows it too. My back Doctor and Knee Doctor work in the same office.
I think they want people to wait so they can appriciate the new knees.
BUt I also expect him to do the surgery within the next year, he's just trying to see how far I can go on, with what I have left of them.
Sometimes I think I'm going to go crazy if I don't get some sleep soon, I don't even remember what thats like.
But I don't know how to talk to Pain Management either.
When I try to work, I end up dragging my leg (I never know which one from day to day is going to go out from under me) and I lose my job because I am a liability. So I'm on SSD.
On my last visit to Ortho, I ask him FLAT OUT, How much time do I have left on these knees? He said: Your already on borrowed time, theres no Cartalidge, no kneecaps and NOTHING HE CAN DO. He said when 3 of 3 happened:
1) I can't walk due to pain (already there for awhile).
2) When the pain keeps me up at night (Already there too)
3) Where Pain Meds no longer work (I wouldn't know PM won't do anymore for me).
THEN HE WILL DO THE SURGERY!
About a year ago I was in Walmart and trying to walk (I had my cane) and a cart, I got in the middle of the store and all the sudden I couldn't put one leg down, I stood there, didn't know what to do, I couldn't move, I couldn't even hop on my toes. One leg just WOULD NOT WORK, the pain was so bad I was stranded. I stood there wondering: Now how am I going to get back to my car???
After that is when he did the Arthroscopy on both knees and drilled the holes. His original reply was: I'm not sure what we can do, the MRI doesn't look that bad. I said: THEN LOOK INSIDE!
He did, and he was soooooooo glad he did! He found a mess that took hours to clean up. He says the severe burning is the Arthritis that has grown back. (in 7 months).
Sorry for the book!
Stardust59

[Robert_325]

Enough is enough. It is not worth ruining your life over. Tell them to fix your knees. It is ultimately your decision. IF you tell them you are in terribly bad pain, and that you are sick of the pain meds as they don't even work anymore, that you want to do the stupid replacement surgery now they will have to do it. If they don't I would tell them that I would just go to another Ortho then who will!!! Rest assured they don't want to lose a customer. That is what you are. And the customer ultimately makes the calls. Don't let them push you around. I am serious. I would not stand for this another day. I have been locked up and unable to move too. I know what that is. They have already told me they would do my replacements as soon as I started acting my age. I just like to hang on as I know I can't run and play racquetball with artificial knees or I would destroy them. I tough out the pain, though I don't have it like I used to after the bi-lateral release. Stand up to your dr and tell them you have had enough. You don't have to be afraid of your dr. You are in bad pain. That is what they are for.

[Stardust59]

Robert,
Thank You, I will definitaly let them know I have HAD ENOUGH! No sense in driving PM crazy along with me.
When I TOLD him to look in my knee's he did without a problem, so I am sure he won't give me a problem with this either.
I appriciate all your advice. It really feels good to find someone who knows what your going through.
Can you tell me one last thing?
What DID happen to me in Walmart ?
I never understood that.
Thank You again,
Stardust59

[Robert_325]

Originally Posted by Stardust59

Robert,
Thank You, I will definitaly let them know I have HAD ENOUGH! No sense in driving PM crazy along with me.
When I TOLD him to look in my knee's he did without a problem, so I am sure he won't give me a problem with this either.
I appriciate all your advice. It really feels good to find someone who knows what your going through.
Can you tell me one last thing?
What DID happen to me in Walmart ?
I never understood that.
Thank You again,
Stardust59

I can only summize what happened in Walmart. But I think my guess will be correct. Knees must have cartilidge to move properly. I have had both legs at different times repeatedly lock in all sorts of positions be it while walking and locking, to sitting in a chair to driving, even while trying to play racquetball and literally having to pick up one of my legs with my hands and move it myself ... they just wouldn't work. I have even fallen down when they unexpectedly locked and just gave out on me. It has hurt so badly when they lock and me not even be able to straighten them out with my own hands let alone by themselves. It would almost feel like they were totally frozen and it felt like my leg might even break when I tried to straighten it out it was locked so bad. You can't walk like that. It really is not that uncommon if you have had some scopes done. They go in and cut out the torn miniscus and if they remove enough, the bones rub and just lock up together. There is nothing to aid in your movement if the cartilidge is all gone and the bones are rubbing together. If you look at the pictures the ortho has from when they drilled your knees, you will see that the bones have what look like craters or big dents in them. It is actually wear from the bones in the knee rubbing together. The bones get stuck when they move into those craters and they can't get loose. That is almost for sure what happened to you. It's time for you to put this behind you and get your knees fixed and you won't be in so much pain. I know how bad it hurts. Good luck. Hope I have helped. Glad to answer any questions I can.

[Stardust59]

That sounds exactly what it was like, and it was even BEFORE the scopes. Thank You so much for all your help.
Take Care and I wish the best for you as well!
Stardust59