[DebraKosbar]

Well hello everyone, well just got back from my knee surgeon and found out I have a torn meniscus, well do I dare have this my doctor really don't want to but I'm in alot of pain..... The last knee surgery created the R.S.D I'm pretty scared can anyone help or have any info for me........ Thanks

[loretta]

Originally Posted by DebraKosbar

Well hello everyone, well just got back from my knee surgeon and found out I have a torn meniscus, well do I dare have this my doctor really don't want to but I'm in alot of pain..... The last knee surgery created the R.S.D I'm pretty scared can anyone help or have any info for me........ Thanks

Hi Debra, your Dr. must have a reason for not wanting to proceed with the knee surgery. Most Drs. and RSDers like to stay away from surgery because of the high percentage of spread to the surgery area.
Let me ask you this, is the pain you have now in the better knee, better or worse than the knee that had the surgery? A great number of us got RSD following surgery-me included. I know have full body RSD plus internal organs. It's not good. Is there another form of treatment for the knee, I have no knowledge of the torn meniscus, whether there is an alternative treatment other than surgery.
Please know we are thinking of you. your friend, loretta with big hugs

[daniella]

I am confused does your doctor want you to have the surgery? Have you went for another opinion? For myself if I ever was suggested surgery I would have a few opinions to make sure. Are you under the care of a pain doctor? If I had no alternative then to have the surgery I would have a pain control treatment set up in case for after. I wish I had more answers for you. I hope what ever you do you feel better.

[aj822]

Surgery and RSD... be super careful!!

You sound similar to my case – Initial injury torn meniscus. I have had 3 surgeries to repair knee (2 of which were major OATES procedures) over past 4 years and my Ortho did not realize that my constant complaints of pain was RSD. He swears that if he had known/realized that RSD was present he would not have performed surgery 2 or 3! I now know that I had RSD symptoms way back to when I first fell and hurt my knee but no one diagnosed it for over 2.5years. My knee never healed and I have 9 cm of meniscus missing which makes walking very painful but NO ONE will touch me to operate on my knee because my RSD is so bad.

Now this past December my Pain Doctor surgically implanted a spinal stimulator and he told me the odds of RSD spreading to the incision areas as well as the hardware/wire areas were slim but possible. He down played the risk I believe because he saw dollar signs associated with implant. I know that sounds cynical but now that the implanted stimulator is not really helping he is no longer excited and engaged in my care. I took the chance and gambled because I felt the benefits of the stimulator were greater but boy was I wrong! Not only do I have a stimulator that does not provide much relief, I now have RSD in my back and buttocks area, basically, everywhere they cut is now affected with RSD. I not only have my daily meds and morphine but now I wear pain patches all over my back.

Do your research and due diligence before you jump into any type of invasive procedure anywhere on your body because the medical community does not fully understand or believe that RSD will spread or jump to other parts of your body. I am living proof that it does spread, jump and invade other areas than just the initial trauma area. If I can be of any further help to you feel free to send me a private message. I wish you the best of luck!

[DebraKosbar]

Originally Posted by aj822

Surgery and RSD... be super careful!!

You sound similar to my case – Initial injury torn meniscus. I have had 3 surgeries to repair knee (2 of which were major OATES procedures) over past 4 years and my Ortho did not realize that my constant complaints of pain was RSD. He swears that if he had known/realized that RSD was present he would not have performed surgery 2 or 3! I now know that I had RSD symptoms way back to when I first fell and hurt my knee but no one diagnosed it for over 2.5years. My knee never healed and I have 9 cm of meniscus missing which makes walking very painful but NO ONE will touch me to operate on my knee because my RSD is so bad.

Now this past December my Pain Doctor surgically implanted a spinal stimulator and he told me the odds of RSD spreading to the incision areas as well as the hardware/wire areas were slim but possible. He down played the risk I believe because he saw dollar signs associated with implant. I know that sounds cynical but now that the implanted stimulator is not really helping he is no longer excited and engaged in my care. I took the chance and gambled because I felt the benefits of the stimulator were greater but boy was I wrong! Not only do I have a stimulator that does not provide much relief, I now have RSD in my back and buttocks area, basically, everywhere they cut is now affected with RSD. I not only have my daily meds and morphine but now I wear pain patches all over my back.

Do your research and due diligence before you jump into any type of invasive procedure anywhere on your body because the medical community does not fully understand or believe that RSD will spread or jump to other parts of your body. I am living proof that it does spread, jump and invade other areas than just the initial trauma area. If I can be of any further help to you feel free to send me a private message. I wish you the best of luck!

Hey A.J., Sorry about all you have went thru and now going thru... I'm on 3 months with this torn meniscus the pain is getting worse my surgeon really don't want to do this surgery but I have to work and I'm on my feet everyday. So I have to be able to work.. I take meds everyday.I'm seeing a new R.S.D doctor monday we will see what he has to say..... R.S.D. never goes away right, I really don't know but I do know I have the same kinda pain that is now in my shoulders with now injury to them at all.... So let me know. And I will keep you in my prays...... Thanks alot great info.... keep in touch...

[DebraKosbar]

Originally Posted by daniella

I am confused does your doctor want you to have the surgery? Have you went for another opinion? For myself if I ever was suggested surgery I would have a few opinions to make sure. Are you under the care of a pain doctor? If I had no alternative then to have the surgery I would have a pain control treatment set up in case for after. I wish I had more answers for you. I hope what ever you do you feel better.

Thanks Daniella, No my doctor really don't want me to have the surgery but I have to work and I'm on my feet everyday... And it will never heal or get better, matter of fact it will get worse really bad..... Monday I go to a new R.S.D doctor and my surgeon wants to talk with him..... But he has no clue of my past the new doc, oh well we will see..... But thanks alot........

[aj822]

Debra,
For some people, RSD goes into remission but NO it never goes away. Once the sympathetic nervous system is comprimised it does not regenerate or heal itself... it is permanant. The symptoms and level of pain can vary, have different trigger points and for some, disappear for time periods. I have heard of people who had bad times for years then it slowing changed for the better and have been in remission for years. Also, have heard of bad times graduating to worse and they never reaching a good point which disables them. This is one reason RSD (CRPS) is one of the most misunderstood and misdiagnosed medical condition out there!

Part of my severe Meniscus damage was because of my job... I was Admin Manager for a large big box retailer and I was on my feet (on concrete) 14 hours or more a day. I walked miles and miles around that store, climbed, kneeled, you name it - My Ortho feels this played a huge part in completely wearing my meniscus down basically to the bone. I did this on and off between surgeries for years. Never wanted to abuse work comp or desert the store who depended on me. Now, I am completely disabled and have limited use of my leg and have been told I will never be able to work again. Even if I could find a way to function at work I am on so many narcotic meds that I am not allowed to drive (Illegal to drive while under the influence of drugs). Not sure that I could have really done anything different cause I had to work... we needed my income to survive. Now I am left with small monthly comp payments and fighting SSDI for my disability.

Make sure you modify your daily "On Your Feet" time while your knee is healing and work with all of your doctors to make sure you don't do more damage. Reqest medical note for light duty or limited duty to make sure your employer is onboard. It is totally possible to work with RSD and knee damage if you can manage meds and modify your routine to take special care of your knee. You have some tough decisions to make and only you can make them. Listen to others, gather your options, do your research and then make the decision to have surgery or not. Take care of your knee and remember that if you make your knee worse by overdoing it (at work) you can run the risk of not being able to work at all because your knee will be worthless like mine.

Hope this helps. I will keep you in my thoughts and prayers!! If you need anything just send me an email! Continue to pray for all of us that suffer from this terrible monster!!!

[shapeshifter224]

I have RSD in my right ankle and needed surgery in the same ankle or I would probably never walk again. (needed ligament reconstruction). Per PM dr, I had a nerve block the day before surgery and an epidural in the surgery room, to try to prevent spreading.

I am only 4 weeks post op, but so far I have yet to have any spread. I think along with the risk of any trauma (surgery) causing spread, the concern of being immobolized (casted) is also a concern for spread. I had developed osteopenia from being in a boot for 7 months so my surgeon is being extra careful post op. Instead of leaving me casted for 6 weeks as would be normal for this surgery, he took me out of cast at 3 weeks and put me in air boot and started light weight bearing.

So although I am not far enough along to claim no spread from the surgery, I can say if you feel you need to proceed with surgery, make sure the drs take precautions that may help minimize the risks. Its a very scary decision. We know from experience how awful the pain is with RSD and noone wants it to spread, but sometimes it wortb the risk. My deciding factor was that my drs felt like there was a chance of remission or pain relief because I could start moving and get out of that boot.

Good luck with your decision.

[shapeshifter224]

PS... addition to above post (I cant edit yet).

I am nervous everytime they as much as stick a needle in me. I have had several nerve blocks, each with increasing success. But it looks like it has spread to my hands (from the IV ?) I am so scared that it will spread to my back from the nerve blocks. But I have continued them because I have seen relief, so I am still in hope of remission. And I cross my fingers and pray that my risks pay off.

I am on the verge of losing everything, job, house, car, etc. So that played into my decision.

If I wasnt, aka could walk and the blocks werent working and and and... my choices would be different. I wouldnt even let them stick a needle in me. But its not differnt so I took the risk.

I guess my point being, I didnt want you to think I had the surgery without some major factors that drove me to take the risks. AKA, there is a big risk, so weight it all out and like I said above, if you go that route, take precautions.

[DebraKosbar]

HEY HEY go to C.N.N news on R.S.D pretty cool news on it...... If I could do that I would...... in a minute... The pain, it 'makes you crazy, I hate it. So not to have that pain would not be normal for me..........