Hi, everybody:

I have full body RSD. I might need another left knee surgery (the eighth one): an Anterior Cruciate Ligament (ACL) revision reconstruction with an osteotomy of valgisation.

During some of my seven previous left knee surgeries, I had post-operative control, either with MSIR (morphine sulfate immediate release) capsules (I am still using my fentanyl patches) or with a femoral nerve block for the left leg (Ropivacaïne was used in these blocks).

After my seventh knee surgery, during which a femoral nerve block with Ropivacaïne was used, my RSD spread from my left knee/leg through my spinal cord all the way up to my brain, then my RSD became full body. All this happened despite the post-operative pain control with the Ropivacaïne femoral nerve block. The anesthesiologist (and the orthopedic surgeon) knew I have RSD in the left knee, so why was nothing done to prevent my RSD from becoming full body or is there just nothing that can be done to prevent such a thing from occurring?

I would like to know how to prevent my full body RSD from flaring up, aggravating, and spreading even more after the coming eighth knee surgery. If there is nothing to be done, I would like to know the truth.

If you have link(s) to medical protocols I could show my anesthesiologist to prevent a full body RSD flare-up and aggravation, please post them so I can print them out for my doctors.

Thank you very much for the information.

P.S. I will also post this message in the Chronic Pain forum because different persons, using different threads, might have different ideas and experiences to share.

Surgery is very RISKY for RSD patients. I've needed elbow surgery for 8 or so years, and it just isn't worth the risk to me or my docs.

Will this 8th surgery improve your function to a degree worthy of potentially exacerbating your RSD?

I had a fourth wrist surgery, that was post RSD diagnosis, and a stellate ganglion block helped keep things from flaring and spreading for me. YMMV, that's why docs are much more conservative with invasive procedures to RSD patients.

I had to have a surgery to remove mesh and have the obturator nerve decompressed about 1 year ago so they put an OnQ pain pump on the obturator nerve for 10 days and I had an epidural for 24 hours. My legs were the best they had been since this all started but it only lasted about 2 months and then the most of the pain returned even though I do have some other improvements since the sling mesh was removed. I then had my 2nd nerve decompression surgery 6 months ago (pudendal nerve) and they gave me a Ketamine infusion during the surgery. That really helped my allodynia but not the pain. The majority of the allodynia has returned but it is still better than before surgery.

Bottom line, if you need surgery, there are some options that can be considered to try to minimize flares and spread. Talk with the surgeon about your concerns and maybe they will work with you pain specialist to come up with something to try. Unfortunately, there are no guarantees.

Nyt2,
Did your pudendal nerve decompression help you? Did the surgery cause your RSD worse? You had mentioned you were on ketamine infusion during surgery. How long were you put on the ketamine? I need pudendual nerve decompression but afraid of the flare or worse after the surgery and thus has not yet proceed.
Your feedback is greatly appreciated.
Numb

I had my surgery in May of this year and I do have some improvements of the PNE pain. The Ketamine infusion was 4.5 hours. I forgot to ask them the dose but I see Dr. Hibner next week for a nerve block and another 4 hour infusion of Ketmine. I will ask then what the dose they used. I was the first patient that Dr. Hibner used Ketamine on and I did so well with it he was planning on using it on the next 6-7 patients to see if they have decreased pain after surgery. There is also some mixed literature that Ketamine might have some neuroprotective effect. Dr. Hibner is very proactive with drug treatments for his patients with RSD/CRPS. He believes individuals can have RSD/CRPS in their pelvis. I find that a very interesting thought.

I did have a terrible flare in my legs after the surgery for about 4 days but about 7-8 days post-op I noticed that my legs felt better then they had in a long time and I could wear pj bottoms to bed. For the most part all of those effects have warn off but the allodynia in my legs is slightly better since surgery.

I am suppose to have the other side done in Feb. 2012. However, I am seeing Dr. Hertz in NYC the end of Oct. and will discuss with him whether I am better off to try and get the CRPS/RSD under better control before I have the left side done. I will never be able to sit if I don't have the pudendal surgery and I have so much pelvic floor dysfunction that I will never have any hope of improvement if I don't have the surgery. It took me 3 years to finally have the surgery and I am glad I did. The recovery is very long and slow but it is nice not to feel like someone is stabbing up inside nor something is stick inside of me. Sitting is still a major problem.

Hi, Lit Love:

I realize surgery is very risky for RSD patients. When my orthopedic surgeon told me I would need surgery on my left knee (the area where my RSD started; my RSD is now internal generalized), I did not know if I should accept or refuse this surgery, that is, if the benefits of this surgery outweighted its risks. I still do not know. My orthopedic surgeon told me it was my job to decide what to do. The problem is I do not know what to decide and do.

Quote: "I've needed elbow surgery for 8 or so years, and it just isn't worth the risk to me or my docs." So you and your surgeon decided not to have your elbow surgery done. Since you did not have your elbow surgery, you were safe with your RSD, but how is your elbow doing?

Quote: "Will this 8th surgery improve your function to a degree worthy of potentially exacerbating your RSD?" The problem I have, mainly with my ACL (Anterior Cruciate Ligament), which is stretched and non-functional, can sometimes cause knee giving-outs and falls when I walk. Can my orthopedic surgeon say "this eighth surgery (an ACL reconstruction) would improve my function to a degree worthy of potentially exacerbating my RSD?" He cannot guarantee such a result because my two previous ACL reconstructions have failed already, so it could happen again.

Quote: "I had a fourth wrist surgery, that was post RSD diagnosis, and a stellate ganglion block helped keep things from flaring and spreading for me." I had femoral nerve blocks after several of my previous seven surgeries. Even though some of these blocks helped somewhat with the post-operative pain, I do not think they did prevent my RSD from flaring up and spreading.

Thanks for sharing your experiences and information.

Hi, nyt2:

I have never heard of OnQ pain pumps being put on a nerve. I wonder if such an OnQ pain pump is similar to a femoral nerve block being put on a nerve (I am not sure which one).

They left your OnQ pain pump on the obturator nerve for ten days and you did not get any infection from your pump being left on for this long. You are really lucky! Even though I still felt severe pain from my surgery and from my RSD, my orthopedic surgeon had the nurse remove my femoral nerve block after about two days, despite my protestations, supposedly to prevent any infections. Result: the pain came back with a vengeance. I would spend my days and nights on my hospital bed crying. The orthopedic surgeon and the nurses did not believe I was in that much pain. They just thought I was being hysterical. They even called the shrink to my bedside, which aggravated things considerably because this idiotic shrink spent his time telling me that my pain was in my mind and that I was a druggie. I sort of kicked him out, telling him I came to the hospital for knee surgery and pain, not for craziness and hystery. I also told him I hate idiotic shrinks who spend their time telling me that my pain was in my mind and that I was a druggie.

I never was able to get an epidural nerve block. I was told these blocks are reserved for future mothers who are going to give birth.

It is really unfortunate nerve blocks cannot offer permanent pain relief. That would be too beautiful to be true.

Quote: "I then had my 2nd nerve decompression surgery 6 months ago (pudendal nerve) and they gave me a Ketamine infusion during the surgery." Was your ketamine infusion given through an IV line in one of your arms? Where I live, ketamiine is only used in veterinary medicine. What about us, humans?! Do we not deserve the same pain relief?!

My orthopedic surgeon is kind and understanding, but I know for sure that the nurse taking care of me (I unfortunately cannot choose the nurses who take care of me) always try to brainwash him because she does not like my taking the MSIR (morphine sulfate immediate release) capsules my primary care doctor prescribes for my RSD pain flare-ups in ordinary times. The only pills this nurse consents to give me even though I am screaming, crying, and writhing in pain are... guess what? TYLENOL pills! TYLENOL pills for post-operative and RSD pain! I cannot believe my eyes and ears! This is after the femoral nerve blocks are removed. These blocks are not that effective; I think it is because the orthopedic surgeon or anesthesiologist did not put enough medication into the syringe whose piston is pushed by a sort of machine so that the pain medication (Ropivacaïne) enters through the femoral nerve block. My complaining, begging, screaming in pain, crying in pain, and writhing in pain does not get me anywhere.

Quote: "Talk with the surgeon about your concerns and maybe they will work with you pain specialist to come up with something to try." Unfortunately, the only pain specialist in French Polynesia, where I am right now because I cannot afford surgery in the U.S., is not good; he treats me as if I did not have RSD and as if my pain was in my mind. Once, he even told me to cut my fentanyl patches (the kinds without a reservoir) in two, which would have killed me if I had obeyed him. Would you trust a quack like that? The only doctor who takes care of my pain is my primary care physician.

Thanks for your kindness and information. I will try to find someone willing to help me with my pain (post-operative and RSD) in the hospital.

I think Dr. Hibner is the only one I know of who does this for peripheral nerve surgeries. When you have pudendal surgeries with him the OnQ pain pump stays in for almost 3 weeks. He rarely gets infections now. When he first started doing this for post-op pain control he had some problems with infections but now that he has all the details figured out it is rare that anyone gets an infection. The biggest problem with them is they sometimes leak but the pain is so well controlled who cares if it leaks around the insertion site.

The Ketamine was given through an IV line in the arm.

I just feel so bad for you that you have to fight for any type of pain control. It is sad that even those in the medical profession don't understand.

I ended up hospitalized with Serotonin Syndrome one time and when my husband took me to the ER in the wee hours of the morning the ER nurse was so rude to me because I couldn't walk. She thought I was having an anxiety attack until she hooked me up to the monitors and realized I was in serious trouble, bad enough they thought initially it was a thryoid storm. After she saw my heart and BP problems she was nice to me. Then the residents came in and I wondered how most of them got through medical school. Very bad experience. Good thing I knew what was wrong with me and told the ER dr.'s what it was. Unfortunatley, I think we could all write horror stories about our medical care!

Keep fighting for your treatments. Prayers and a hug are sent your way.

You're welcome, sorry I missed your response!