What has been your experience with surgery or other invasive procedures (IVs, IV blocks, injections, etc.) in the areas where you have RSD?
I ask because I am getting the feeling that the new physiatrist and new orthopedic surgeon may be considering a few things along these lines (now that I have some diagnoses)...and not sure how much they know much about RSD. I know I have read many times (in many places) that it is not a good idea to have anything invasive done in the RSD area, because it can intensify the pain badly and may cause it to spread.
Could you please share your experience with me in this thread, so if/when the docs do recommend something invasive, I can print out the thread to show them the experiences of actual RSD patients? Pro or con...just to make sure my foggy brain is remembering what I thought I have read? Sure would appreciate it!
I haven't had surgery in my RSD area - yet. I will be having some early next year. My surgeon said he'll block my arm from the shoulder down in addition to the general anesthesia. He also recommended having an appt. made with my pain management doc for right after the surgery in case I have a flare and need a block. Some doctors recommend having a block before the surgery in addition to everything else. I'm not going to do that.
I did have surgery on a non-RSD area. Even for that they gave me a block in addition to the general as a precaution. I had no problems at all.
I've had many surgeries since being diagnosed with RSD. RSD started in my left knee and since then, I've had 10 surgeries on that knee. As Julie said, my docs also put an epidural in for the surgery and left it in for a few days after the surgery in an attempt to not exacerbate the RSD. Seemed to have worked. I've also had surgery in non-RSD areas (tonsillectomy, pain pump implanted) and no spread there.
Hi Wanda & welcome to the boards! You ask a very interesting question and one that I'm sure alot of people could add to.
I've had surgery in the neck at C6/7 where the RSD is, but before they dxd me with RSD. I was showing all the classic signs before the surgery-skin color changes, temp changes, atrophy, dystonia etc.) but not one doctor told me about RSD. They were hoping that the surgery would cure my symptoms. It did somewhat for about 6 weeks, until I started PT again for the 5th time. My PT, Eric, who worked on me twice before, was the first one to say I had RSD, because I would soak the sheets with just slight manipulation, or almost fly off the table!
To think Sharon had 10 surgeries on that knee! Was this before or after they knew you had RSD? Anyhow I had a MRI last August that showed mestatic focus where the surgery was( cancer) and all my dr's are very cautious of doing a biopsy of the neck to determine the origin. They don'[t want to flare up the RSD, which could put me back in a wheelchair or my cane. I also reinjureed my left wrist, & a huge gangolian cyst emerged, and again, my ortho doesn't want to lance it, cause I could lose the feeling or movement of the wrist. Only if it gets bigger they say. Well it varies in size, & I just learn to live with it like everything else.
I've had blocks, which didn't work--but it was work comp that denied them till 18 months later, and they hurt when I had them. My cab driver had to carry me up the stairs both blocks. Maybe in Hawaii they are more cautious. I have other RSD friends here, and they are the same way them. Tommorrow I find out the results of my repeat MRI on my neck, and I'm very scared. I keep telling myself that that word doesn't exist in myvocab, but if if shows up, I want to have the biopsy of the neck so I can go forward with my life.
Anyone else out there who has had invasive procedures recommended in the RSD area? And this I guess could before being dx'd with RSD, or after. Aloha Skooze
Thanks for the info, everyone! Sure appreciate you all sharing your stories. Keep them coming!
After reading the literature, surprised the first three responses didnít have any horror stories! Most of what I have read said invasive stuff was a really bad idea. You just never know until you talk to the people actually dealing with this stuff.
Hi Wanda & Sharon & thanks for your replies. I think all of us here could learn a bit about the subject of invasive and non-invasive procedures in the RSD affected area.
I saw my neuro yesterday to read the film. Well the hospital staff, didn't enclose the most recent film of my MRI even though the jacket said so.
The slip of paper that was enclosed said no changes since last MRI. So does this mean I still have bone cancer? Yes and no said my neuro. He said that he really was against sticking a needle in my neck and poking around in the surgery area, cause it could do more harm than good. I said cancer is not good and should not be taken lightly. Early detection is the key. He agreed, and is sending me to another neuro for a second opinion. This neuro I've seen before, & he is a crooked work comp dr. So it's a waste of money and time.
The only other test that came back bad, was my 6th mamo in 1 year, which showed the left breast(ALWAYS THE LEFT ) needs to be rechecked again.
I really don't enjoy these mamos, & for you guys its like having a car run over your breasts back and forth . Especially when you have RSD you can not, I repeat can not get in a comfortable position long enough for a xray.
Long stiry short, my neuro doesn't want to poke a needle in the RSD area, which he added the nerve blocks just caused more pain than worth the risk.
Anyone else out there with stories? We'd love to hear from you. Aloha Skooze
I have had RSD in mhy left knee since August of 04. I was diagnosed after a fall at work and then surgury to fix that. Like almost everyone else the surgery made me worse not better. I have been on neurontinand now gabatril along with waytoo much pain meds. Ihave been told by all my docs that I need the sympathetic blocks but WC disputes everyone with RSD it seems. So I have been waiting for my blocks for about a year now. I thought I was alone. Does anyone know how likely it is that I will end up having to use a cane or walker?
Hi Cypils, & welcome to the boards. Having RSD and being in a work comp case is like a double whammy. It's like adding insult to injury. Like pouring nepalm on an open wound. Nerve blocks are best when caught early. With work comp they drag their feet on everything, which frustrates us more, depresses & stresses us more, which only escalates the RSD.
It's too soon to predict where you will be or how things will turn out. Dwelling on this will just depress you more. Nerotton to me just made me more depressed and almost sucidal. But different meds effect different people differently. The key to RSD is to get the affected limb to move again. It's hard especially when the pain dominates us. Try baby steps. Take frequent brakes and walk when the pain gets bad. If you don't use it you lose it. I'm not talking about 10 minutes of walking & stretching. I'm talking about when your feet start to tingle, like they are flling asleep, stand up and take baby steps. Never think of yourself in a cane ! Take some pics of you before RSD and put them where you can see them. On the fridge, by your bed, computer..wherever. Never give up hope. We have bad days and horrible days, but don't ever think that you will be like this forever. Keep telling yourself (that's why the pics help) that you will beat this, and you may not be a speed skater, but you will not let this get the worse of you. One baby step at a time.
Hang in there, & keep in touch even on your bad days. You will find that you are not alone, I have a cane, still in the trunk of my car, that I keep there as a safety net. I've pulled it out several times, no matter how emabarrased my kids were to see me with it. Hope this helps. Aloha Skoze