Konditions and symptoms besides TOS
 

I have noticed that many have other conditions besides TOS, and symptoms without explanation in the TOS. This is also the case for me. I think, it is unlikely that one person should have so many different conditions, and that it is more likely , that it is all coursed by the TOS.
Think it would be possible to learn something, if we made our own little investigation,so if you agree, tell about your conditions and symptoms, which is not considered to relate to your TOS.

In my own case, i have following:
Restless Legs
Hypermobillity
skipping heartbeats
often get fluid in the lungs when swalloving
stuffy ear - funny feelings

I get/have/had most of those and they are worse when my neck gets tight.{TOS flare}

I can drink water and for some reason it doesn't go down the right way sometimes. Or a real juicy apple or orange will squirt down my throat and I end up coughing because it went the wrong way.

stuffy ears - the same for me when I flare it is noticeable otherwise OK

those 2 above for me are due to trigger points mostly and those are caused by the tight muscles.

For the legs - I take a Calcium/magnesium blend and that helps it for me.

my heart doesn't skip beats but did seem to beat harder when I was in the severe spasms. {neck & chest muscle spasms}

hypermobility - yes - seems to often be a factor in RSI & TOS

I do think very strongly that these are TOS. Fluid in lungs with swallowing - you mean choking? We all do that - and it's TOS. The nerves involved act abnormally, and when they swell, they act up. So we have problems swallowing, ear tininittis (sp?) ear swelling, side of the face and molar pain - look at the nerves and where they go, and it is not hard to see why it is caused by TOS. It is no mystery to us "old timers."

The hypermobility has always been discussed by the TOS docs when they do their exam - I remember Dr. Brantigan making sure I did not have hypermobility.

Heart skipping beats has to do with the autonomic nervous system starting to act abnormally. That is why I put up that thread on autonomic neuropathy systems! Read those symptoms! Heart skips beats, full feeling stomach, trouble with digestion...all as a result of the abnormal / damage from TOS that then causes the autonomic nervous system to decline.

I see the full picture.

As for the ears: Does it get real bad, when you fly? I never travel by plain anymore, because this sets it on with neck and jaw pain, numbnes one side of face and stuffy ear plus bad headace. This can last for weeks afterwards.
Anyone have any advice for that? I do not get far by car or train:rolleyes:.

These conditions and symptoms. Do your doctor agree, that this is due to TOS? and how does he explain that?
I hav had surgery on left side (severe vascular TOS) but neither hospital or my own doc seem to know about other than the most common, and i have given up mentioning these things.

Anyone who has acceptance from your Doc, that your somewhat odd symptoms are connected, and that somthing like autonomic neuropathy can be part of TOS?

I feel i am left alone with all this and a good doctor who knows about this is not existing
in my country( Denmark)

Milou,
My MDs didn't get into the TOS thing at all, they got hung up with diagnosis's of multiple repetitive strain injuries . My symptoms moved around a lot{ nearly every RSI except carpal tunnel}.

I finally found a very good chiropractor and then 2 other advanced PTs that did the comprehensive positional testing - to rule in or out TOS and /or c spine problems.

PS - I forgot to add our useful stickys link for you , lots of info to help you sort some of it out -
http://neurotalk.psychcentral.com/thread84.html

Thank you so much for your answers, and bumping up the old thread. I think, you,tshadow will have bennefit from reading this link.
I will write a post in the latest thread (questions for TOS) one of the next days, that will maybe be of interest for you. OH, i cannot send links yet, but add www to this adress, then you will find it. Very interesting, but it dosn`t seem to be researched for some years. Why???? beats me.....

geocities.com/cerebellartos/CTOSenglish.html?200730

I skimmed thru it -interesting- here's the link -
http://www.geocities.com/cerebellartos/CTOSenglish.html

I'll add it into our sticky too:D

How do we confirm an article like that - that it is reliable, etc. It was so edited and in such medical speech that I was unable to really be able to analyze it.

I hate to take anything in to my doctor for many reasons; because the work comp will claim I'm trying to influence the doctor, that the information itself is wrong or misleading and the doctor relied upon it in any way, and the doctor him or herself is seldom, if ever, happy to read anything outside of what they already believe. So I can't take it in to my doctor.

But it is an interesting piece to start with, and maybe I will try to find out if any of the author-doctors are located near enough for me to call and talk to.

God bless.

Yes, that is my question too. How reliable is this??? I found the article on medline too( i think it was medline) but it is rather old, and it seems,there is no following up on this. But i think it is worth researching on, and if we are several doing that ,perhaps we come to something we can use???
I would not take this to my doc either, but looking for confirmation of some kind. I have found out, that this is a life lasting condition, and it is hard work to find out how to help one self, so everything takes its time.But as long i am doing something to solve my problems, i can live with things. In my case, it is only my own research i have got any help from, and i have succeded to a certain lewel. Had i done nothing, i would be lying in bed now, instead of the fullfilling life i have now, in spite of some few symptoms, i hope will not get much worse.

NEVER GIVE UP!!!

I followed the pub med link near the top and looked at the related articles link to find more-

http://www.ncbi.nlm.nih.gov/sites/en...ractPlusDrugs1

I've got a whole host of probs in addition to TOS including the throat clearing, hypermobility (which is now affecting various joints), cervical disc and joint disease, fibromyalsia (though not severe), shoulder blade (knifelike) pain, muscle spasms in the upper back, shoulder arm and hand pains, and a lot of head and ear stuff--fullness in the face and jaw area, pain in the jaw, pain that radiates down from the ear, very stuffy ears, extreme pain during and after flying (enough that i hardly ever fly and gave up any multiple flights per day), and plenty of tinnitus.

but for me i found i have a CSF leak that goes into my ear. i'm planning on having that repaired very soon. i was hoping the surgery would clear up many of my ear symptoms but i was told that they are likely to be unrelated. i would like to learn how the ear symptoms are related to TOS before having the surgery.

I also have gum problems. I was told that they were possibly caused from taking so much Neuronitn for so long but I realize that the nerves might be affected from the TOS. Anybody else have gum probs?

The neurologist I saw last week tried to tell me I have carpal tunnel and also elbow tunnel and shoulder probs in addition to or instead of TOS but he isn't very knowledgable about TOS. I'm afraid my list could go on if I am to include everything. I have a real propensity to develop RSIs from doing just about any activity--but I now think that that is due to the hypermobility. My recent PT told me that she believes that the hypermobility helped lead to all of my problems-from neck to TOS and all extremity probs.

**Administrative edit**


Of more than 1,300 patients, some h111111111111111111ave undergone up to 8 different surgical procedures in each operation for a total of 3.800 procedures. THIS ARTICLE HAS BEEN TOTALLY CHANGED AND GOOFED WITH TO PROVE A POINT THAT THESE ARTICLES AND THEIR INFORMATION CAN BE COMPROMISED AND THIS ARTICLE'S INFORMATION IS FALSE, OK? DON'T USE THIS ARTICLE. SORRY IT WAS USED FOR A "FOR INSTANCE" - AGAIN, DON'T USE THIS ARTICLE.

So here I changed a BUNCH of information about the article and reposted it, so that's what I mean, how do we authenticate all aspects of the article -

that it is accurately reproduced on the Net
that the information is correct or the findings were done in a scientific manner

I don't know how to take an article like this and authenticate it and understand its findings or figure out if it is relied upon and agreed upon by other specialists in the field.

Does anyone know how to do all of that? I mean, where did this article come from so that I can confirm all aspects of what was retyped on this Web address?

(And I'm not saying I don't believe it or am accusing anyone of playing with it, I'm just asking how does one properly authenticate and interpret it.)

"The benefit of this surgical technique manifests immediately because of the disappearance of the vascular and neurological compression produced by the anterior scalene muscles at C6-C7 and by the sternocleidomastoideo muscles at the entrance of the brain where the Atlas is situated. This has been demonstrated in patients with CTOS, Symptomatic Parkinson's, Functional Alzheimer, Early Symptomatic Parkinson's, psychological disturbances by hypoxia, Epilepsy, multiple Sclerosis, hemodynamic Parkinsonism and threat of gangrene of the upper limbs."

Tam, are you saying you have CTOS? Is this in addition to or diff from regular TOS? The surgery sounds very positive but I didn't understand the MickeyMouse & DDuck refs.

I understand your point, but would like to point out that, if posting remains within the guidelines for NT, this really wouldn't be an issue.

Per NT guidelines and DocJohn's post here: http://neurotalk.psychcentral.com/thread37384.html

posts must contain only a paragraph or snippet of information then the link to the original article. This way members know that what they're reading is exact or "authentic" from the source.

So, to comply with copyright laws, as well as NT guidelines, posts such as the example removed (wherein an entire article seemed to be pasted then altered, without a link), shouldn't be an issue here. :)

This is how we try to keep accurate information here at this site.

However, to authenticate what we're reading from the source, I would certainly look for valid references posted to know where they've come up with their information.

I hope that helps a bit. :)

Thanks!

KD

Perhaps it is my poor english skills, but i dont quite understand, what is the issue here. There has been found a link on the net, and the question has been : Is this article found on the net reliable? If we use all we find here as the whole thruth (spelling????) we will be dissapointet. It can, if we are lucky be used for further investigation.
Dont Know what the fuss about changing anything comes from? Who changed what?and when? and where have been an administrative edit?

Here are some Pub Med links for CTOS
(Cerebellar Thoracic Outlet Syndrome)
or Cerebral Thoracic Neurovascular Syndrome

be sure to explore the related articles also

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/2...ubmed_RVDocSum


The geocities site is one where anyone can make a site and post things anyway they want, it may be copied exactly, or there may have been changes made, that's why I posted the link to the PubMed site also -for the original articles there.

Fern and Milou - what we were doing as an experiment was to take one of our articles that we had on the Web and obviously mess them up (and then we took them off of here very quickly so that people would not rely upon them or violate the terms here) and then ask, how would someone really know if they had gotten a messed up version? I think in talking it all out, that research, as Jo's thread suggested, would be best. I, personally, see what doctor wrote the article himself, (or herself), and I call him and talk to him (sometimes they will talk for hours about TOS) and I have gotten so much information that way, and what I should do about my treatment. (Also, that was before my surgery, so there was a lot of talk about whether they would have the surgery themselves.)

So this was sort of an off-hand question that seemed to get bigger as I asked myself about it.

It sounds reasonable. I do not think we can use these articles to exactly find a name for our symptoms, but to get an understanding ,how things can be connected. Dont know if you have read my story under the thread "symptoms of TOS" i think it is. But I have had many neurological symptoms (and not only in upper part of body), and most of them are gone after surgery. That makes one think that this is not as simple as some would say. Only reason i am researching again is, that some symptoms get worse again, and i worry about that. The more i know, the better treament i hope to get, if i get the need again. How to use the knowledge ? That depends of the situation, the patient and the doctor. Let me hear if you come any further in research - i will do the same.Though, I have difficulty to belive, someone would use their time to fake such articles. For what reason??
But that dosnt mean other doctors believe or agree.

Milou, I will read your story you have posted. I look forward to getting to know you better as we progress. Also note that for some reason last night, my fiance thought it would be funny to change some of my posts just a little to make me "not to serious" as he put it...in my opinion, it was not funny at all, and I like funny pranks, but I am going to go through and fix the unfunny pranks now...(as if I had nothing better to do while in pain but to fix bad pranks. So sorry!!!

Tshadov - i have not had the intention to make you feel to serious. Of cource you are serious - its your health and quality of life. Just got worried I had given someone falls hopes by linking this article. Nothing wrong with your way to react!!!!! I have been there myself :wink:

Oh forgot: My post is not on the TOS symptoms thread but the "Questions for TOS"

Hi Fern
Have you seen a cardiac surgeon ?? to make sure, you do not have vascular Tos. As far as I know the ear symptoms could stem from compression of the vertebral artery.
I had lots of neurological symptoms before my surgery (and seen lots of neuros, who found nothing in spite of severe vascular tos on both sides) . I was only seen by a cardiac for the TOS. He dit not go in to the neorological things but emphasised that of cource there were nerve impingment, when there were vascular.
Sounds reasonable that hypermobility could course our problems in the first place, but not much research on that from what i have seen.

Ps. I often have pain from the "neck" of my tooth, but have never had the thought, this could be connected too.

If you have more "odd" symptoms , would you please tell about them.??? My intention is to list the results when there are more replies, so we could all get a broader wiew on this.

Anyone else who have symptoms or conditions that is not considered of your doc to have connection to your TOS? I myself will add the symptoms i have not mentioned yet, those i had before my surgery. I just need a few days to get the time doing it.

Milou--I do have vascular TOS and it's much worse on the same side as my CSF leak and the side of the much worse ear. It's the subclavian artery that has been tested as opposed to the vertebral artery. (I did have that tested by MRI some time ago when they were looking for a possible "bruit" due to noise I felt I was hearing in my head. I didn't have the bruit. Are you saying that you found that ear pain was due to TOS? If so can you explain please. I'll think about my add'l symptoms and post when I can.

Take a look at this Triggerpoint chart - find where your pain or symptoms are and then click to read more info and see pictures and also self care that you can do to see if it helps.
http://www.pressurepointer.com/pain_reference_chart.htm

Ear & Jaw pain is in the middle of the right hand column
you would then click on the Trapezius or SCM to see more info about those.