Doesn't TOS have many of the same symptoms as RSD though? Is there a definite test for TOS?

I had TOS surgery in 2000.

They did a EMG on me and they don't normally show a thing.

My TOS Dr. is Dr. Sanders in Denver. I saw the ones at the Vascular Institute first and they diagnosed me with TOS but Dr. Sanders ended up doing my surgery.

There is a test but I don't remember the name of it. It's where you bend your hands at the elbow and hold your hands up in the air and open and close them. This usually brings on the symptoms. You won't be able to do it for long. I always left those places in more pain then I went in. Dr. Sanders don't mess around though. I went back to that one place so many times I think I paid for their building. In the end they sent me to Dr. Sanders for my surgery.I won't say why but I was sooooo glad he did my surgery. Also they check the grip of your hand. My right one is so weak I can't do anything with it accept type. LOL

If you think you have TOS I would look for a good TOS specialist in your area. I saw 2 Neurolgist that didn't believe in TOS so I don't recommend going to one of them.

Maybe Jo can tell you how she was diagnosed. There might me more new ways then when I was diagnosed.

Hope this helps some.

Ada

Hi Kate,
There are different kinds or versions of TOS.
A basic description is something causing impingements or compressions on the nerves or blood flow in the brachial plexus areas{ scalenes, clavicle, top rib, extra cervical rib, large muscles or ligaments, etc}

Here's some of my fav websites that helped me to learn, besides the forum.
TOS info:
http://www.medifocushealth.com/RT017/index.php
http://www.nismat.org/ptcor/thoracic_outlet/
http://tos-syndrome.com/newpage12.htm
http://tos-syndrome.com
http://www.doctorellis.com
http://www.cwce.com/feinbergarticles/tos.htm
http://www.tellmeabouttos.com
http://www.vascularinstitute.com/Resource_TOS.htm
http://drbrantigan.com/about/index.htm
http://www.ecentral.com/members/rsanders/
http://www.causeof.org/posture_tos.htm
http://intraspec.ca/tos.php

There isn't a clear perfect test for TOS, unless you do have the extra c rib or bony structures.
It is usually a process of elimination of other causes - like cervical spine injury and such, then add up all symptoms.
But very much like RSD you need to have knowledgeable people working with you. And if you happen to have the combo of TOS- RSD- Fibro you really need some experts or ones that will want to learn and treat you one on one, not with the standard treatments that work for acute injuries.

I definately feel worse after O/T! The night she was pushing on my neck I had severe burning pain which caused me to cry like a baby in pain. I felt like I was burning to death!

My face get's numb and tingly as well, sometimes. That's when my neck bothers me. I just think it's the CRPS travelling or sending weird messages to my face. Ugh.

I can totally relate.

I had to suggest to my O/T that she should measure my arm to make sure it isnt getting worse or if it's possibly getting better (deflated). She said it was a good idea but got caught up in making a full arm splint which totally...SUX when sleeping.

Okay...that's all I have to say for now. I'm concerned it might not work either now that you mention it!

Greyhoundlover, Why do you have a splint for at night? Did I miss something? Did you have surgery? Sorry, it is just normally bad practice for someone with RSD to be in devices. I am right out of it these days, so again I am really sorry for my ignorance, I am just concerned for you.

I was offered a contrast bath yesterday but my PT/modalities person. I said no, not that. I told them before I would not do anything with hot/cold or ice. I know already what the cold leads to and how badly I respond to it. I don't have meds to help me get through something like that. I also said I don't have enough faith in that treatment to believe I will be better for it in the long run. So, no.

I know many people have had good results from it but I also hear a lot of those same people who have RSD for a second round and don't respond at all to the contrast baths or extremely poorly to them. So, the theory I am working on is that the exposure of the nerves to the coldness of the water for an extended period of time eventually damages the nerves, rather than causes them to become desensitized. In effect, it seems to damage them further in the long run. Nevertheless, I was trying to convince myself that maybe I should try it because I am in so much pain but no. I don't have the meds to help me get through that and I won't be told that I am responding badly because everyone seems to at first and then gets better with it.

She didn't even ask me first about how the TENS unit worked or anything. I was totally insulted by her attitude. She did ask at first but then it became, so you are not even willing to try something that is going to make you better? I have had a lot of success with this treatment. I simply said, I am not willing to risk the long term damage it may cause. Pick something else. She got up and walked away. Great! I would be nice is she offered something else but I also had an appointment with the psychologist for hypnosis. The whole time during the session I spent trying to get out a yawn, I didn't want it to be too obvious but it was one of those yawns that if you try too hard it won't happen. The other thing was that my left side from the neck down through my arm wanted to cramp up and pull in and my right side kept twitching. All I really wanted to do was go to sleep. He thought it went well. I thought it took forever and that him talking the whole time was actually annoying. I guess I just don't have it in my to relax when someone else really wants me to. LOL!

I did talk to several people yesterday, our information session yesterday was the role of the client and therapist. HAH! I would not have wanted to be the woman teaching that class. We did take it pretty easy on her though. After we all lost it! It was really funny. But the truth of it is. No one is really very happy about their treatment there and most of them find they are getting worse or have other pains and are being told by their therapists that they must be doing something wrong, it is normal, it is not related to anything they are doing at the clinic or can't get the therapist to give them the time of day! One of them have the same therapist as me and he has similar problems and he agrees she is completely in opposition to everything you tell her. She spends SO much of her time finger pointing elsewhere we might as well be elsewhere. Unfortunately, too many of these people can't get a hold of their CM at WC to do anything about it. ERRRRR......

Anyway. I am in rough shape these past couple of days. I may not be here evey day simply because I hurt too much and am too tired to make it to the computer. Plus I have a lot going on here that I am trying to manage at the same time. I would like to be more supportive of you all, I am sorry I can't be around more or post more elsewhere. Thanks everyone though.

TTL J

So today. I was told I had to wear shoes.....That it was their boss that said so. The one said, could maybe try wearing your sox with your sandles, whereas the other one said, you should be wearing shoes and maybe just ones that you didn't tie up tight or have the laces in......

I am going to ignore the second solution and go with the first. At least I have been trying sox and only because I found a really great pair of soft ones that are low cut. On bad days, like this morning seemed to be I could barely tolerate that.

Did we ever get into it though. I told them I don't want to be there. I asked why they even wanted to me to go to them when I am in pain because I have been told "well it isn't...." and "What do you want me to do about it?" They agreed they can't do anything about it, it is merely "Good to note". I told them I want a second evaluation of what has gone on with the rest of me since I started, and had the original diagnosis. The one thought I should get another opinion about my original injury and see someone, maybe go to a walk-in clinic about it, and the other things going on. Oh, ya. I live in Canada okay. We have the doctors take care of A LOT of things for us. Well this one PT is telling me I should be trying to get a new doctor if my other one doesn't want to deal with the CRPS and medicate me for it. Yet, she is suggesting I go to joe blow at a walk-in clinic?! She says my goals are too high and that at that rate I will never get one. I told her that the regional health board told me that what I need is a specialist and that the doctor through their own office is trying to get me a specialist but it is all taking time. It is not like I haven't tried but that it is difficult when every place I call says, your doctor needs to be the one to call these places and make the referrals. I HAVE TRIED!!! I also don't just want a doctor to medicate me. I want one to explain things to me about ME and see what is going on with ME. They just don't seem to get it. Thank God I have such a wonderful CM with WC. She has gone out of her way to get me appointments with specialists and is trying to get me into this wonderful clinic that specializes in CRPS. She is the one showing compasion and understanding.
That clinic. It is a 2 day interview and screening process!

"The CRPS program provides early diagnosis and intervention for clients with CRPS to improve function and achieve return to work rates with durable outcomes. Treatment includes sympathetic nerve blocks, physical activation, education, skills acquisition and ongoing psychological, physical and functional evaluation by a Physician, Physiotherapist, Pharmacist, Psychologist, Occupational Therapist and Kinesiologist"

I would have to be away from home. It is just so much harder to be away from him through this than when we worked opposite shifts from one another. If it will get me through this I have to try anyway. They have a pretty strict screening process but as you can see it isn't very often you find this combination in one place. I have a feeling I won't get in because I am not an extreme case, meaning I have pretty good mobility with everything and I don't have chronic discoloration or swelling. This is also why the one therapist doesn't think I have CRPS but she has never seen it swell. It does, not very often but when it does it is usually in the evening.

Anyway. You can see I am still playing the waiting game. Looking forward to Tuesday. Take Care. J.

Hi J.,

I'm not sure why they are splinting my arm at night, I think it might have to do with the fact that my entire extremity is swollen and they think if I bend the arm at night the fluids wont shift?

Does that make sense to anyone?

Thank you for your concern, I'm glad I have people guiding me along here. I am totally new at this CRPS stuff!

Good luck on Tuesday!

Heh, I would REALLY start asking them questions about that splint. I mean I don't know a whole lot either about CRPS but from everything I have read we need to minimize any use of supports or devices of that sort. I don't know though. Has it helped at all or do you think it is making a difference? One thing you can do is to experiment with it and measure your arm around, all the way down and/or around your upper chest, anywhere you feel/see swelling with and without the use of the splint.

I can't imagine you are getting a decent sleep these days. Sorry you have to go through that. Oh, what meds did they give you to try? Are they helping with anything?

Hope you find some place in your mind to escape all of this...TTL J

Hi J,

I'm currently on 300mg of Neurontin twice a day. It did take the burning away from my arm which took place months ago. But now it seems I have burning in my neck and tingling in my head and even teeth sometimes. Especially after O/T.

Maybe I need to increase my Neurontin, or maybe the face sensations have to do with side effects. Not sure. But the burning on my neck and shoulders are somewhat like a painful sunburn now. I had a harsh burst of the burning RSD pain a few Fridays back though! OWE!!!!!!!!!

Most of my pain now is in my arm, not burning but somewhat of an aching and cracking feeling. My arm is sore in different spots when touched or moved. My shoulders and neck are constantly burning now...but not as bad as my outbreak of fire as mentioned above.

I sincerely hope you get help soon, it sounds horrible, what you are experiencing. I will say a prayer for you and hope that you have a more pleasant sleep tonight.

Yes, the arm splint totally sux!

Please keep me updated on yourself!

HI THERE,
Just a quick message to say that I hope you are all Ok.
Be careful when splinting a limb affected by RSD it can make it worse. I had my hand splinted a while ago to try and keep my fingers straight because my arm was in a fist. The splint turned my arm purple and the spasms forced my arm back into a fist so it didn't work.
Take care everyone
LOVE Alison