NeuroTalk Support Groups - Back after 6 years

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Thoracic Outlet Syndrome (https://www.neurotalk.org/thoracic-outlet-syndrome/)

- - Back after 6 years (https://www.neurotalk.org/thoracic-outlet-syndrome/23274-6.html)

I'm sorry but when I read your post I laughed. I don't have a specific diet. I'm lucky if I remember to eat during the day!

After my surgery I had a terrible time getting off all medication. I had to go to Columbia Presbyterian for 2 weeks to get me off EVERYTHING. I don't even remember what I was taking. Every time I went to a doctor, they gave me something else. I just figured if it got rid of the pain I'd try it. Once off all meds I was sick for about 2 months. Sick to my stomach. Couldn't eat. A few emergency room visits for iv's. A few months later I became pregnant with my 4th. I ate very healthy during pregnancy. Felt great. No pain at all. Scheduled c-section so as not to hurt my neck. Been great until a long car ride to florida. That's what triggered it. But I have done the drive in the past so i'm not sure why this one was the one. I am trying really hard to monitor my activities. As I said, my diet isn't good. I have lost about 20 lbs in the last 6 months. I'm not a big person so as much as anyone I liked losing the weight it is not really a good thing. So no advice on diet.

I am sorry I forgot to adress the exercise. Sorry, I stopped laughing. The only exercise I get is carrying laundry up and down stairs!

I'm not meaning to joke. It's just I don't seem to have time for anything. Before surgery I did try acupuncture and PT. I think I would like to try massage now. It seems to be in my upper right trap that I have the pain. Last night my husband woke me to let me know I had my arms over my head again. When that happens I wake up in serious pain.

Quote:

Originally Posted by beth (Post 131919)

When a new person comes along with questions, members both at OBT and here have always tried to help and inform. I remember a newcomer whose TOS sx were getting progressively worse, while she continued such activities as four-wheeling and lifting heavy bags of seed or fertilizer, while at the same time seeking advice on how to relieve pain and avoid needing surgery. I was in a horrible place, severe pain, mourning the loss of my teaching career, and reached out with the best of intentions to urge her to be careful and not push things too far because I didn't want to see anyone else go through what I was going through.

I didn't mean to offend you; I didn't mean to act like your mother, and I never said you deserve whatever you get if you won't listen. My words were "I truly hope you don't live to regret ignoring my advice", or something to that effect. And I meant them. There IS a difference in intent; I was concerned,maybe more than I should have been, but I'm really sorry that upset you.

This is NOT OBT; it's a much NICER place, no silly game-playing or Jr High nonsense. I think we all can agree we like it better here, and the past is better left in the past. Let's all "judge not, lest ye be judged."

beth

Not sure what you're talking about. I've never ridden 4-wheelers in my life and never carried bags of seed or fertilizer either. I don't really worry about being judged either, but that is very good advice. Another good piece of advice is "to practice what you preach".:rolleyes:

Quote:

Originally Posted by fern (Post 131804)

I thought that this thread was complete but I'd like to add a few comments of my own. Over the short time I've been part of this community, I've held my comments when I have felt others disrespectfully judge me or anyone else in this very helpful community. I would like to regain a sense of respect by and for each one of us in our ability to choose our own best course of action. Personally I think it's a waste of time to focus attention on any generalized assumtion of "they" or "them". Why don't we agree to speak only for ouselves and not focus on or speak for any generalized multitude or even individuals who don't take what others believe would be the best course to manage their TOS and other health issues.
That said, I believe that we are each the best manager of our own unique cases and that none of us have the knowledge or the right to judge others.

************************
Recently, I mentioned that I am rarely here anymore. I am involved in other forums also and very active in the life of a 6 1/2 year old going on 16.:wink:

On this forum and OBT, advice is given out quite frequently pertaining to the adviser's own condition and also medical advice is given, quite often, whether sound or not.

I have to agree with Fern, "none of us have the knowledge or the right to judge others". Even medical healthcare professionals do not have the right to judge others".

On a thyroid forum, if medical advice is given (directed) to someone, the poster is warned. Second offense, poster is Banned. On a general health forum, this is the same rule. On two heart forums, no one is allowed to post medical advice, unless of course you are a doctor or his/her PA or his/her RN.

Everyone's health problem's are unique. More than 68% of people search for health answers on line at reputable/recognizable, medical sites. The internet is a valuable tool for many things but it also can be one's worst enemy if getting wrong information and believing everything one reads on the net. We all were blessed with intuition and that "gut feeling". We should rely on it. One cannot be too careful in dealing with health issues. You want the best for yourself.
Lisa

There are a variety of sites available on the Internet, and each person is free to seek out those that best meet their unique needs. NeuroTalk is not a professional medical site, but an on-line community for those suffering similar neurological conditions to share experiences, support each other, comfort and encourage. The site's guidelines express that members are NOT medical professionals, and none of us posting here claim to be - we merely offer that which may or may not be helpful based on our experience, and express OFTEN that the poster should check with their Dr if a treatment, therapy or medication might be an option for them.

With the real dearth of understanding of TOS on the part of most medical professionals, it is left to TOS patients to educate themselves about their condition and often how to best approach their PARTICULAR case. Unless you are fortunate enough to have close access to a top TOS Dr and/or PT or other KNOWLEDGEABLE assistance, this usually becomes a case of trial-and-error. By coming together en masse, we utilize a large body of experience, share the latest published information, and inform each other of poissible side effects and/or complications of various medications that often even the MDs are not aware of. We have each others back.

Does that mean we are ALWAYS 100% correct? No, because no one is, it's impossible. But we try, with the best intentions, to help each other. And the errors are usually quickly sorted out, mostly with kindness. Again, it is left up to the individual member to sort and choose which options, if any, they believe might be useful.

If a person comes to a site asking for help, the help is usually offered with good intentions, out of concern for a fellow TOSer. Sometimes judgement is read where none is intended. However posts that blanketly generalize or accuse a whole segment of people, such as those who choose surgery or need meds, are always a concern - it is no different than accusing all Mexicans of being lazy, then adding a disclaimer, if you are Mexican and not lazy, I am not talking about you. Blanket generalizations ARE judgements, and do not belong here.

RedJp - to clarify - off-roading in a 4-wheel drive; heavy bags of [I]something[I]. Due to RSD my short-term memory and word retrieval skills are shot, this is as accurate as I can be.

As I've expressed many times, can't we agree to bury the hatchet?

Peace, beth

Quote:

Originally Posted by beth (Post 132213)

There are a variety of sites available on the Internet, and each person is free to seek out those that best meet their unique needs. NeuroWeb is not a professional medical site, but an on-line community for those suffering similar neurological conditions to share experiences, support each other, comfort and encourage. The site's guidelines express that members are NOT medical professionals, and none of us posting here claim to be - we merely offer that which may or may not be helpful based on our experience, and express OFTEN that the poster should check with their Dr if a treatment, therapy or medication might be an option for them.

With the real dearth of understanding of TOS on the part of most medical professionals, it is left to TOS patients to educate themselves about their condition and often how to best approach their PARTICULAR case. Unless you are fortunate enough to have close access to a top TOS Dr and/or PT or other KNOWLEDGEABLE assistance, this usually becomes a case of trial-and-error. By coming together en masse, we utilize a large body of experience, share the latest published information, and inform each other of poissible side effects and/or complications of various medications that often even the MDs are not aware of. We have each others back.

Does that mean we are ALWAYS 100% correct? No, because no one is, it's impossible. But we try, with the best intentions, to help each other. And the errors are usually quickly sorted out, mostly with kindness. Again, it is left up to the individual member to sort and choose which options, if any, they believe might be useful.

If a person comes to a site asking for help, the help is usually offered with good intentions, out of concern for a fellow TOSer. Sometimes judgement is read where none is intended. However posts that blanketly generalize or accuse a whole segment of people, such as those who choose surgery or need meds, are always a concern - it is no different than accusing all Mexicans of being lazy, then adding a disclaimer, if you are Mexican and not lazy, I am not talking about you. Blanket generalizations ARE judgements, and do not belong here.

RedJp - to clarify - off-roading in a 4-wheel drive; heavy bags of [I]something[I]. Due to RSD my short-term memory and word retrieval skills are shot, this is as accurate as I can be.

As I've expressed many times, can't we agree to bury the hatchet?

Peace, beth

Good heavens, Beth. In the first place, I'm at a loss to understand why you were convinced in the first place that I was talking about you in my original post. No where in there did I mention your name or anybody else's and neither would I. If for whatever reason you're absolutely convinced that I WAS talking about you and NOT naming you, then in your quest to always have the last word, you basically "outted" (sp) yourself with that reply.....

And for the record, I have NEVER been off-roading- NEVER. When LisaL mentioned that back on obt, that was a HUGE joke between us. She knows that I was VERY particular about that Jeep and she gave me hell about that. It was an awesome Jeep- lifted, huge off-road tires, etc. but it was a running joke that I never took it off road because I told everybody that that would scratch my paint.:rolleyes: My son always said that vehicle was totally wasted on me and I'm sure he was right.

So, whatever else you have to say, knock yourself out, you're welcome to have the last word but I've said all I'm going to say on the subject

Sorry If I step in a moment, but I ahve met many in person on this forum. It hurts me terrible when people here have no faces or personalitys to other here and start nit picking.

You know what, agree to disagree with statements please don;t ppick them apart.

LIFE IS TOO SHORT. I found out in the blink of an eyelash anyone of us here could be gone and did it all mattter if someone had personalitiy issues.

I have been told I need to have a watch dog for me not to hurt others with my advice...
SUCKS when you can;t allow your personality to bw what shows on a forum and gruidges are held.

I am taking it personally , maybe because of losing De alll this crap is upsetting.
Can;t we all get along and put it in the past and foget it already...
I love so many here and it this is hurting me as much in my heart as missing De.

Di

You know who was here within a month of De passing away and holding me and who Knew De like an Aunt sharing a hot tub with her, BETH.
Not that the sympathy you all gave me was any less, but Beth was there as your representitive physicallly for me, to all from the forum losing De.

just a little fyi...so there is no misunderstanding when replying to a certain members post....use the Quote button.

it will copy that post onto your post for reference.

i would also suggest that any further discussion on this "conflict" be taken to PM.

i am a bit confused by what you said beth, about NeuroWeb. are talking about posts on another forum? if so, there is no place for that discussion here on NeuroTalk.

Quote:

Originally Posted by LinJane (Post 120933)

Unfortunately, after 6 years pain free, I have had my symptoms return. I had the rib-resection and scalenectomy in 2000. I have been off all meds since 2001 and 2 months ago I started with the pain in my neck, shoulder and right arm. I started PT this week and taking percocet again which I am not happy about. It took me a long time to get off all my other meds. It was not a pleasant experience. I am wondering if anyone else knows if this is common for this to happen. I believe the symptoms started after a very long car ride from NJ to FLA. We did it in 2 days but I did 99% of the driving and it was very stressful. On our return, slowly the symptoms came back. I have an appointment with my surgeon, Dr. Togut in 2 weeks. Just wanted some input. Thanks, LinJane

this is the original post of this thread. i know linjane has gotten many replies. there has been much discission. let's get it back On Topic please.

Thank you. I try to joke and keep things light because I know wa ALL have major stress in our physical and most personal lives. I can't offer medical advise because I don't have any but basic first hand knowledge of what I have gone through. It would be nice to lighten up the mood alittle. I understand that laughter is the best medicine. Alittle might be nice. I believe we are all here for the same reason.

Linda