[flippnout]

Yes I had a sympethetomy, along with my TOS operation both done togather. I still feel the pain but it is so confusing with RSD and TOS I will say the pain is half, with the help of meds and the operations.

I sweat on half my body now, and the sun burns me so bad on the side of sympethetomy so I have to be careful, besides the RSD burning the fact I do not sweat on that side is bad so I must be careful when out in heat. My body temp is out of wack I must have it cold all the time, yet I cannot have a cold breez on affected side, winter is bad for me yet I must have it cold in my house because of my body being out of wack I've had to have AC on in winter at times, or window open. With the RSD and TOS I do not like going out with the wind an cold...see sympethetomy is wierd I know we are told not to, but yet when the choices are few and I was in such a state there where no other options for me, so what did I have to lose was my thoughts.

I have done my research of sympethetomy and found it is illigle in some countries we all must make choices with this RSD I did what I thought was right- as of now my pain is half no better yet I will take that what will happen later will I be one of the people that have the bad reaction I dont know bbut I took a chance and it is helping me somewhat. I will never tell anyone to do this it is a big step and alot can happen to you, my doc exsplained everything to me what i was in store for all complications so on and after affects and I made the call to do this.

I want to talk to others who have had this done, or to thers in my area who have RSD or TOS- it seems like I'm alone in my area a pretty big city sorry I'm private about it,to many eyes see all this, funny I'm sure what I've described they already know who it is...LOL no wonder they keep wanting me to see a shrink, yet the shrink says I'm ok LOL......

I dont remember talking about care givers? if so I wish I have kids and I have to push myself everyday to just be a dad to them,it is hard I have days I just do not want to move like we all have, but I do I get myself up the same time everyday like I was working I dont sleep much at nite but I have kids home for summer and three of them is a handfull till mom comes home to help, she is the best to put up with me at times LOL I get in my grumpy moods and just want to go and medatate to be alone with the kids it gets LOUD! so I have to find my time wich is HARD but I do it...my BETTER HALF always puts me in my place when I need wich is so true because of the emotions we all have, it seems like we get stuck in the ME's I call it dont say you dont where you start acting and thinking only about ME (YOURSELF) poor me, no one understands me,so on we all do it I know. My wife is the best she helps me, stands by me and is not one to back down she knows I try around the house and I try to go do things out of the house when I can, but I have limitations and she accepts it. So yes I love my care giver for always!!!

Sorry so long, I wish to speak to others with sympethetomy, I am alone where I'am no groups and I have never seen any one at the teaching hospital with it, RSD or TOS, I'm sure there are some where I am but not many and I am from a pretty big city with the blues.

[dreambeliever128]

I hope we didn't offend you by asking. It's just that when you didn't use the word sympethectomy I didn't quite get it.

That first paragraph is exactly how I am without the symppethectomy. I sleep with a fan in the winter and I cannot stand the heat anymore.

You are blessed to have a good wife to stand by you and help you through it. I lost my husband in Nov. and he spoiled me. He was such a good person and loved me and took care of me no matter what. We all need support.

I know we had some girls on here that had a sympethectomy but for the life of me I can't remember who they were. I am hoping eventually some of them will come on here to talk to you and share their experience.

You still belong here with us though because you have the RSD. I too have had TOS surgery and that's where my RSD started. I am better because of that surgery for the TOS. Dr. Sander's in Denver did my surgery. So we have that in common too.

I don't blame anyone for having anything done they feel might help them. When I first got RSD I wanted them to cut off my right arm. Unfortunetly I knew that wouldn't have done any good after my friend had his right arm cut off in an accident and he still had the same pain I had. Still today there are times when I want parts of me cut off because of the pain being so bad.

Again, I am sorry if I offended you in anyway and I am happy you are here with us.

Ada

[flippnout]

Please no one offended me, do not say sorry I'am not offended in anyway. Did I give that impression? man my spelling is going down hill like my memories, Damn you RSD and TOS I will beat you! spider pig spider pig doing what a spider pig does..LOL got calm down and get myself in a better place can you tell I hate RSD and TOS if it wernt for spider pig LOL yes I'm way out there doing what a spider pig does, or is it harry pigger today? whatever with a roll of my eyes I keep going!

Sorry Im out there, I guess always been and a bit flippn as some already know as I have done some wierd things in the past. Wich I still say SORRY! for the ones that know I try to be positive through all this yet it is hard whe my pain shrink puts reality back in with no cure you know, what are you going to do with your life! YIKES man is she blunt or what, tick tock my brain is so slow I finally tell her my master plain to rule the world, ah heee hee hee couph couph with my spider pig LOL truelly I do love the docotrs I have and do what they want me to do, so I must plan for a life with hope of starting fresh and new like a firend said so I will, stay posative friends thats all we have to try to beat this have you not felt it burn more when you get down or when you think bad thoughts, or even when you start to doubt it burn more and more and then POOF in bed and alone and then on and on, sure it burns now but try to control it after all we are all A type so we know control..just my thoughts I know you may think Im crazy but hey good for you I still love ya MAN or women! my spider pig will handle you LOL!

Iam not crazy just flippnout

[dreambeliever128]

I said one day that I liked your name, flipnout. That should be my name.

I'm glad you are in councelling. I have been for about 8 years. Like you, I get this ideal in my head that I can rule the world then my Dr. says, Ada, you can't go back to work, you know that. I am hard headed when it comes to giving up.

I try to stay positive. I have 2 Grandson's that I try to keep happy for. That's why I put the happy mood up today. They will be over later and I try not to let them know how I feel. Dustin, my oldest has had to stay with me on the nights I have been throwing up and I hate to make him feel like he has to take care of me. He comes in the bedroom often and asks me if I want or need anything. He wakes me up to ask me how I feel.

Like you said, even if we are happy or sad we still have the pain so it shouldn't matter. I cry when my kids aren't around. I'm private to any of them unless I am in such a shape they see me a mess.

I have my councellor to talk to so I try not to put everything on my kids and grandkids. If I didn't have him, I would be a mess today.

As far as spelling, I use to be very good at spelling. Now, I don't even bother to do spellcheck because I don't have the energy to do it.

I'm glad you have great Drs. We all need them. I love most all of mine that I have now also. My TOS Dr. is great. He emails me all of the time to see how I am. He has been a big help to me with all of my arm and hand problems.

I read a good story in a magazine last week about post and emails. It talked about how one person can say something and another person can take it the wrong way. I try not to do that but sometimes I do and I was worried I'd hurt your feelings. It's just my reading.

Thanks for telling me you were ok with what I said.

Ada

[sue k]

Hi Flippnout,
I had a right lumbar sympathectomy 2 yrs ago. Before the operation I could not stand the cold weather. Even in the house I had to keep my foot wraped up in a heating pad. I never left the house. These New England winters can be so brutal. My foot always felt like it was in a freezer. I would scream from the pain. I have to say its the best decision I ever made. My still colder than the other one but so much better than before. I still have the pain from the RSD and foot drop but the pain from the cold was so far worse. Hang in there.

Sue K.

[Imahotep]

I already have sweat and goose bumps on one side of the body. It's hard to stay comfortable because my left tends to get cold easily and if I get overheated the pain flares up. I wrap the hand and wear half a sock most of the time. When it cools off I have to wear what I call a sleeve which is just a long-sleeve shirt with everything cut off except the pocket, left sleeve and a couple of buttons.

I've considered a sympathectomy so am very interested in how well this works for you.

Best of luck. I hope you can get back to a real life or at least be more comfortable with your new one.

[Imahotep]

Originally Posted by dreambeliever128

I said one day that I liked your name, flipnout. That should be my name.

I'm glad you are in councelling. I have been for about 8 years. Like you, I get this ideal in my head that I can rule the world then my Dr. says, Ada, you can't go back to work, you know that. I am hard headed when it comes to giving up.

I try to stay positive. I have 2 Grandson's that I try to keep happy for. That's why I put the happy mood up today. They will be over later and I try not to let them know how I feel. Dustin, my oldest has had to stay with me on the nights I have been throwing up and I hate to make him feel like he has to take care of me. He comes in the bedroom often and asks me if I want or need anything. He wakes me up to ask me how I feel.

Like you said, even if we are happy or sad we still have the pain so it shouldn't matter. I cry when my kids aren't around. I'm private to any of them unless I am in such a shape they see me a mess.

I have my councellor to talk to so I try not to put everything on my kids and grandkids. If I didn't have him, I would be a mess today.

As far as spelling, I use to be very good at spelling. Now, I don't even bother to do spellcheck because I don't have the energy to do it.

I'm glad you have great Drs. We all need them. I love most all of mine that I have now also. My TOS Dr. is great. He emails me all of the time to see how I am. He has been a big help to me with all of my arm and hand problems.

I read a good story in a magazine last week about post and emails. It talked about how one person can say something and another person can take it the wrong way. I try not to do that but sometimes I do and I was worried I'd hurt your feelings. It's just my reading.

Thanks for telling me you were ok with what I said.

Ada

I'm fighting this sucker tooth and nail but my shrink and I are starting to believe that's part of the problem: I need to do a better job of accepting the it while I'm fighting it.

We all have to find what works best for us.

[dreambeliever128]

I bumped this up due to the sympethectomy issue and to help Flipnout.

Ada

[Vicc]

Hey guy,

I pretty much stopped talking about sympathectomies years ago, after the practice was so widely discredited that it didn't come up as a forum topic anymore. I stopped researching it at the same time, since it no longer seemed relevant, so I'm not aware of any new research that might alter my opinion about the procedure; that it causes more harm than good.

I hope my last words aren't too offensive to you (or others) but they represent the views of most researchers who have studied this surgery (three years ago anyway), and I believe they still do. Anyone considering this surgery should research it very carefully and at the very least get a second opinion from an independent source.

I oppose the procedure and believe it is harmful, but am not so curmudgeonly as to hope that it won't help you, or to criticise you for going ahead with it: Pain relief from sympathectomies has been known to last more than two years, and I can certainly understand why someone would opt for that and let the future take care of itself.

I hope that you get more relief than anyone in history and that it lasts through a very long life.

If you are not so fortunate, I hope you don't blame yourself for any consequences: We make the best decisions we can, based on the best information available to us and we aren't always 100% right. That's a rather common feature of being human.

I do wish the best for you and very much want to be wrong about my misgivings. I hope you will continue to tell us about your progress, and if things don't work out as you hoped, about that too. Your words (either way) will help others considering sympathectomies, and helping others is what we're all about here...Vic

[flippnout]

YES VICC I KNOW the docs did not want to do it but all said after being sent to alot of doctors for thier take on it, it was all that was left for me at the time!
I had been untreated so long, I was a mess my head stuck to my shoulder (TOS) and the color changes and swelling and BURN, I was given all info and I pray I may be the one right with 1/2 pain relief right one can wish- but be brought mack down to EARTH as my shrink does when she says but there is no cure so NOW WHAT ARE YOU GOING TO DO. I say this people study the fact as VICC says I can say that my procedure is against the law in several countries. I will give a link http://home.swipnet.se/sympatiska/index3.htm
that is a great link that describes everything to people about Sympathicothomy.

WHY ME?
This is a question we probably all have asked ourselves. If it is true what they say, when marketing the sympathectomy operations, that only 2 percent of all patients regret the operation - why was I struck by this lightning? Well, it was a long time ago, if ever, we believed in this number of unsatisfied patients. The amount of people who regret the operation is most likely much higher. Yet, some are satisfied with their operations, while others have had their lives ruined. This must have a cause! Did the surgeon make a mistake, was the wrong nerve cut, or what?
If we presume that all operations are carried out in exactly the same way and that no mistakes have been done when cutting the nerve, there must be another factor that affects the outcome of the operation.
We have not yet found an answer to this question: why have I all these side effects? One of the "demands" we have forwarded to the swedish health authority "Socialstyrelsen" is that they through investigations and research really tries to find out why some sympathectomies fail.
That is just what we claim: some sympathectomies fail. Even if the surgeons succeed in removing the hand sweat or the facial blushing, this is too often made at the expense of severe side effects.
Ulf Sundequist
An interesting theory was presented by Dr Ulf Sundequist at FfSo's annual meeting in Karlstad in october 1999. He claimed that the outcome of the operation is depending on which type of personality you are before the operation.
The people who suffer from side effects are often people who are highly "revved up". People with high ambitions, highly engaged in everything, without the ability to say "no". Many of them have perhaps the tendency to keep feelings "locked in", and have an emotional burdon to carry. These people are before the operation high on the adrenalin side and low on endorfin. Some of them have perhaps equaled this imbalance by exercising a lot (raises the endorfin) or by taking different medicines to accomplish the same effect (cipramil, anafranil). People who suffer from PTSD (Post Traumatic Stress Disorder) also runs a greater risk of being struck by side effects.
This is just a small extract from Dr. Sundequist's lecture. Since quite a large number of members on this meeting could recognize themselves in this description, the meeting decided that this theory was interesting enough to follow up. In the ongoing survey we will also map the circumstances before the operation.
Apart from this theory and Dr Sundequist's interest, we must say that we have met very little understanding from the health authorities and the hospitals. The operating surgeons are not willing to confirm that sympathectomies can be the cause of our symptoms, and have shown even less interest in searching for the reason why some patients are struck by side effects. If we had received this confirmation and understanding much of our struggle had been won.
Why does this seem to be the thing that always pops up? we type A people need to warn other type A's to chill out or else!!!!!!!


I will keep all informed about my ride