Just my thoughts but with TOS and RSD (CRPS I & II) there seems to be so many schools of thought. Two surgeons deemed top in the field will automatically do a sympathectomy if you have symptoms of RSD. However, the same patients that corresponded with me were concerned because of the sympathectomy being done, made them worse now.

The blocks may help make the erve sleep during surgery, but blocks only last a short period of time. I think there are a lot of varibles to discuss with the surgeon pre op during the "informed consent" your right to know. The doctor has to tell you the risk, what will be done to reduce the risk and if the worse happens what they can do to reslove or address it.
For example: if a nerve in the arm is nicked, some surgoens explain that they will cut the enrve completly. This is because the nicked nerve will burn and hurt like he!!, but if the nerve is then cut it stops and will feel like novacain at the dentist instead.

One thing that hapens to some is the arm being placed with a tourniquet in the sling held up for long can bring on a whole new problem or escalate the old one; there are several nerves in the area that can be nicked, damaged in stretching, or cut too.

When I had knee surgery in 1997, I developed RSD in my foot. But still had a second surgery to again do the miniscis tear, clean up osteo arthritis that affected under the knee cap and removed a bakers cyct that formed. I did not get any exageration in my RSD in my foot. Opposit side of my body.

There is the conversation with the doctor, by signing away the permission consent a lot of side problems unless neglagence are signed away in the risk. As the doctor explained the risk.
I am not sure wht the research shows or tht there is any information of using blocks is protocol or would help. That is an area I have not researched, but will.

Just doing some thinking out loud and sharing some personal experiance.
IT is always best to call our surgeon and speak to them and ask all the questions you can think of and try to understand and reslove what happens in surgery and post op healing
Di

My blocks have lasted each time after surgery. When the Dr. did my shoulder surgery the second time they did a block on me right after I went to sleep. I know because I thought he was going to give it to me before and when I saw that needle coming at me I just paniced but I was on my way out and he said he was going to wait until I was out.

When Dr. S done took out my muscle underneath my left arm he had a block done first. The RSD didn't come out at all. I honestly believe that if there is a chance that the RSD can be kept in then we have to ask for that block.

The Drs. don't always disclose everything. I don't think any of them discussed RSD as a possibility with me but by being on this forum could help some. I was so out of it I just never went to any other forum but the TOS forum at the time and later after I developed the RSD I went to that forum.

I think also RSD is being discussed more now on this forum then it use to be and that is helping people to ask questions about it and learn about it.

I can't imagine a Dr. wanting to do a sympathectomy so quick without talking to a patient about the things that can be done to help get the RSD calmed down. I never was offered that by anyone that I saw about my RSD. I did think it might be a good ideal at times but Deb helped me understand the consequences of one. They only work for so long and then from what I have heard the RSD comes back worse.

To me there are very few Drs. care about their patients and only see the dollar signs on them. The better the insurance the more they want to do to them. I also think they are taught to distance their self from patience and only keep it in strictly professional. Luckily some Drs. are not like that and you really have to research the Dr. and see them more then once before a surgery to get some ideal of what they are really about.

I do believe in blocks though. I also wanted to say that Dr. Hooshmand in Florida wrote a book about RSD. It cost 85. but it was the best 85 dollars I have ever spent. I learned about triggerpoint injections and other things we can do to fight the RSD. It also tells what all RSD can do to the body.

Lisa, I do hope you start feeling better. It's always been a tossup to me which is worse my TOS, RSD, or Fibro. I am so sorry that you did have such a bad experience. I had one with an Osteopathic Dr. so I know where you ae coming from.

I hope you start seeing some better days.

Ada

Hey LisaM, and everyone else I had TOS surgery and a sympathectomy done at the same time I first had test done to see if I was positve for CRPS (RSD) wich I was. I was told everything by this doctor (Same as LisaMs') I was told the risk factors nothing surgar coated for me, this doctor let me know my options at the time since I had not recieved any treatments for so long, for TOS and CRPS no meds no anything I had nothing to lose since I was living in a constant pain scale of 10, my eyes where shut all the time and my head was on shoulder all the time, surgery was my only option. I did not rush into this I talked to a Pain Mng. doc recomended by RSD'rs and a Top Ortho in the country befor deciding this, all where in agreement on me a sympathectomy and TOS surgery was the only option.

I will say this Doctor exsplained everything to me, as well as the other doctors all the negatives and positives wich where few a 20-30% chance it would work is all and even less by other docs, it is too soon to say if RSD has spread since my nerves are going through alot after my TOS decompression and sympathectomy , I will say Doc said I was the worst TOS decompression he has seen , he was amazed how I could even function like he said I was living in just survive mode. I hurt but I haft to see where this takes me now I will let my body heal and go from there I know I may my CRPS come back worse or it may be gone or spread, and my TOS as well.

I think the difference though...is even though we had the same surgeon, he did NOT explain any of this to me, as he did to you. I saw him one week, we scheduled surgery for the next. We did NO TESTS other than a physical exam. All that included was him testing how I raised my arms, and my strength and poking me in a few areas to see when symptoms occurred. He also did NOT explain to me what RSD was, and did NOT explain to me that it could get worse because of the surgery. I brought all of my mri's, emg results, etc...and he didn't even look at anything I brought. Now, I suppose part of this is my fault....but we all know what it's like to FINALLY hear someone say, "Yep...this is what you have, and I can certainly help you,and this is how!" So I jumped at the chance to finally feel better, after a long road of doctors telling me that I was basically nuts.

Maybe he was different with you BECAUSE of what happened with me? Or maybe because you were a WC case? I don't know. All I know is I am SO GLAD, and SO HAPPY that he didnt' treat you the way he treated me...and I so hope that you have a much better outcome than I did. I wish he'd have asked me to have more tests done. I wish he'd have explained to me what RSD was. I wish I'd have had the opportunity to read here on the forum the person who told me not to have the surgery if I had rsd also (but it was too late...I got that message after I'd already had the surgery). i wish a LOT of things. All I know is your experience with this doctor and my experience with him wre totally and completely different. he told me that 75-80% of my symptoms would be resolved with surgery. So, perhaps I had Dr. Jekyll and you had Mr. Hyde LOL!

ok guys showing my ignorance.......what test for CRPS or rsd...been told I have crps 1....which is now supposidly all lumped into crps no deliniation as to which type so the whole of the medical community worldwide can get the wording correct and know what the heck each other is talking about.......


anyhoooo....want to know the test I had the nerve blocks after 6mths of no pain post op and was almost fully functional until physio killed me and put me back to where I was pre op........damn it all to heck......but anyhow again.......I am stll in pain and want to know what type of blocks you guys have or wish to have had.....I have had trigger point bupivicaine (anesthetic sp??) and not sure it helped at all and if it did it only helped in a few spots....think I want marcaine....I know it lasts longer we used to give it to our post op below or above knee amputation oncology patients right into the nerve......they had no pain at ALL and could move until we took the pump out but it lasted for another day at least!!!! so....agian info would be nice guys>????

thanks
LOst....oh I mean Victoria.
hugs

I believe the way they test for RSD is to do a block and if you see changes in the pain level and symptoms that shows you have it. That's how they tested for me and also they listen to a person explaining their symptoms.

There are color changes in the limb that has RSD and temperature changes. It's been so long since I was diagnosed I can't remember.

As far as a Sympathectomy, very few people get them. I find it hard to believe that a Dr. would do one without trying things like triggerpoint injectons, blocks, and meds before going on to that major step.

I have heard so many horror stories about Sympathectomy. I talked to many Drs. that wouldn't even think of doing them. The RSD comes back full force in most people after about 9 months is what I was told by Drs. and don't think it wasn't something I didn't think about at times.

I don't know if I as you Lisa, but do you have a pain management Dr. Also an Anesteologist is the best person to do blocks I believe although there are some pain Drs. that do. I finally gave up on finding a good PM Doctor. My PCP does everything to manage my pain but the blocks.

I absolutely know what you are going through. When I came on this forum back around 98, I was in so much pain, suicide stayed on my mind most of the time. The pain was unbearable.

I do believe that there are some find Drs. out there that can do TOS surgery but we have to be very careful who we put our faith in. I do know that that is hard to do also so I don't want you to think I'm saying you didn't. There are list on the Internet of Drs. in different states that their names are mud so you can go into Dr.s list and find that info. Some websites charge for the info. I tried to find info for a Dr. here in Colorado for a friend and they took her 10. and she got nothing from them. So that's a hazzard also.

I do hope you start feeling better and find some good health care to help you get through what you are going through.
Ada

No, no, no....test for TOS...and the blocks for RSD.

Sorry for the confusion. LOL!

And as for blocks....UPPER rsd is usually helped with Stellate Ganglion Blocks - my PT doc wanted to do one immediately upon seeing the rsd setting in (about 6 weeks post op) but my surgeon said no way...said it was "too soon after surgery" and the area was way too sensitive/swollen and the area that the needle needs to go in is right there...so there's no way they could have hit the right "spot." So...I didn't. Now, my current pain doc says it's "too late" and they won't help me.

However, I've heard others with upper rsd say they COULD...though the docs all say no...

But...for upper body, it's the SGB's. I will see if I can find the link I had showing how one is done. It's either posted here or on the RSD board. I'll go see if I can find it.

Hey LisaM and everyone else I hope we are doing well today, me I had PT today and it is wet and cold here so imagine the worse. LisaM sorry for what you are going threw mabey it was the WC because everything has to be in black and white for them. I went to Our doctor with opinions from other docs WC sent me to and one I paid for saying possible for RSD after all anyone dealing with WC knows doing a IME,AME, so on it is just opinions right so our doc had to prove or disprove CRPS (RSD) so I was sent to do a series of SGB's to see if I had this, of course it came back positive not what I wanted. LisaM you say now that your pain doc says it is too late the same with me see I had a chance for them to be usefull to me early in this I had a doc who said possible for RSD he recomended SGB's to be done guess what it was in the 6 month window, in fact 3 months since injury and the WC/IC played the odds and tried to disprove it saying it was all in my head and I was cured.
I know it is way to early for me to say my CRPS is worse or moved, I was told in 6 months we will see where we are 1 year to see full affects of surgery, I kid you not when I say I was the worse case this doc has seen my nerves where so compressed he was amazed how I even functioned, he even questions me on knowing how much pain I'm in, he says I'm not showing him all my pain, I wish I was given 75-80% chance he never said that to me nor did the other docs I seen after him befor surgery I know why have the surgery than? any one dealing with WC would know they can use the report against me, they can claim I'm refusing treatment so I would haft to go to a hearing so I wait several months, without pain meds or help of anykind and just about time to go to hearing they the WC/IC would say hold on need more info so depos and more waiting for months again all the while I'm getting worse playing theyre game of stalling. I blame the IC/WC for my mess.
Who knows if I get better or I may get worse like evryone says it is too early that is all I want to say it has not been 6 months or a year yet I'm in for a hell of a ride though.
I hope and pray for everyone to have a pain free day, LisaM no matter what we have a long road ahead of us all OK buddy OH I just had a wierd moment there Pauley Shore saying OK Budd-ddy LOL

Vic,

CRPS I is RSD with no known nerve injury, CRPS II is what used to be called causalgia, or RSD with major nerve injury. And yes, a stellate ganglion block is what you want done as a diagnostic test for RSD, and a series of these should be done as they can help reduce the pain and MAY be able to put the RSD into remission if done early enough.

Lisa, Have you actually spoken with a Pain Mgmnt Dr or Anesthesiologist who is really knowledgeable about treating RSD? I think there is no reason not to try the SGB's to see if they help, while it may be too late to put the RSD into remission, I've heard of many Dr's who do them for patients in order to reduce their pain level. Seems to me they can't know how they will work for a person until they at least give them a try, from what I've heard. I know there are a couple of really good RSD Drs in Chicago, don't know if that is a possibility for you, but think you might benefit from another opinion completely apart from this group of Drs you've been seeing.

I know after my vaccine injury my Dr's group was not helpful, they were more concerned about helping him keep his you-know-what covered, I had to go to Dr Togut in PA (I'm in IL) to get a dx , really most of the help I've gotten has been outside this medical group as they have tried to deny my dx and appropriate treatment due to the risk management people (lawyers) .

I think you would probably get better treatment by going elsewhere, if a Dr or hospital "messes up" on a patient once, their lawyers will basically tell them not to offer any tests or treatment that could confirm that they messed up - even though it may be treatment you need. They're looking out for their interests first. I learned the hard way you have to look out for your own, by finding Drs who are not associated in ANY way with the original Dr's medical group.

Best of luck, feel free to PM me if you want!

beth

FIRST OFF, I PM'ed you to talk to you and said also that you could email me if you ever want someone to talk to.

I just wanted to say something on the blocks being to late to help. That's so wrong.

I talked a girl into having blocks after having RSD for 30 years and she couldn't believe what a difference they had done. She had never had one offered to her before and I gave her the name of my Anesteologist and she was so happy.

Don't ever let anyone tell you it's too late. Go to a good Anesteologist or a good Pain Dr. and get their opinion. Don't take just one Drs. opinion either.

I urge you not to listen to a Dr. that tells you that's it's too late for blocks. I never had any for over a year or so after I got RSD and they worked. The story is that you need them within the first 3 to 4 months, that is just not always the case. Don't go for a sympethectomy before you go this route.

Beth, I don't mean to dispute your word on the blocks being to late but I know better by the people I have seen around here with RSD. A lot of people do have that ideal because we have read it a lot but again it is just not always the case.

You do usually have a series also. I only had 3 because of complications but they helped. The Dr. wanted to do a series of 15 on me but what he did helped.

Ada