It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Rare Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 07-10-2007, 11:49 AM   #1
Senior Member
(female)
 
Join Date: Jun 2004
Posts: 110
Janice1033 HB User
Question Thoracic outlet syndrome anyone???

Hello there: I have not posted here in a long time but have recentley been diagnosed with TOS ( thoracic outlet syndrome) I have done some research on this but it is always more helpful to talk to people who have this as well.

I am not having much luck with this so was just wondering if there were some people here who are struggling with TOS? It would help to have people to talk to and compare stuff with.

Thanks for any help anyone can give me with this.

 
Old 07-11-2007, 03:13 AM   #2
ICC ICC is offline
Inactive
(female)
 
Join Date: Jul 2006
Posts: 3,265
ICC HB UserICC HB UserICC HB User
Re: Thoracic outlet syndrome anyone???

My surgeon thinks I have aquired TOS after shoulder surgery. Just had an MRI on the Brachial Plexus but don't have the results yet. I know it is very painful. Try a search on Brachial Plexus they are actually one and the same. I think TOS is the disorder but the area is the Brachial Plexus. I found some great info.


ICC

 
Sponsors Lightbulb
   
Old 07-11-2007, 10:17 AM   #3
Newbie
(female)
 
Join Date: Jul 2007
Location: Niagara Region, Ontario, Canada
Posts: 2
Oceyana HB User
Re: Thoracic outlet syndrome anyone???

I have also recently gotten a diagnosis of Thoracic outlet syndrome. I am scheduled for surgery in the fall, as mine is vascular in nature, causing substantial restricted blood flow to my arm(s).

I am desperately searching out others. Having difficulty locating others with the vascular(venous) type of TOS.

 
Old 07-11-2007, 05:55 PM   #4
Senior Member
(female)
 
Join Date: Jun 2004
Posts: 110
Janice1033 HB User
Re: Thoracic outlet syndrome anyone???

Hello again: Just wanted to say thanks for your replies. It helps to know that there are others with this as well.

My GP also thinks that mine is Vascular and is sending me to a Vascular surgeon. He will see me in September I know this seems like a while but for here that is very quick.

Oceyana and ICC what are your symptoms? I have severe pain when I try and move in certain ways especially moving my arm backwards. I have a ache in the area around the armpit and sometimes it feels like I just cant lift my arm at all.

I also have muscle atrophy and vascular prominence do you to?

Do your fingers have that tingly feeling ( baby and ring finger ) mine do but not all the time.

ICC I will definatley look up this information, I appreciate the ideas it will give me another place to possibly find some answeres.

Well I am going to go as by the end of the day typing is quite painful. I look forward to hearing from you both and anyone else with some thoughts on this.

Take care
Janice

 
Old 07-12-2007, 04:07 AM   #5
ICC ICC is offline
Inactive
(female)
 
Join Date: Jul 2006
Posts: 3,265
ICC HB UserICC HB UserICC HB User
Re: Thoracic outlet syndrome anyone???

Hi Janice and Oceyana....... I see the Dr. today to see if anything vascular is going on. I hope not. From what I have read most times it requires surgery. I don't know what I would do. I have a bad neck and had shoulder surgery in April. Right before the surgery I heard my 2 PT's wispering " Do you think she has TOS". I was doing cervical PT at the time and we couldn't seem to get the left side OK. from my ear down the left side of my neck and I had horrible pain where the pec muscle meets the arm. All thought it was my shoulder. HAd surgery, it was a succes. Problems really started with PT after the surgery. PT yanked my arm so hard one day that my pec muscle and right above my collar bone blew up right in front of her. She said it was normal 6 weeks later I am still swollen across my whole pec area, the swelling at the base of my neck hasn't gone down, my collar bone hurts horrible, shoulder froze from PT pressing, pulling, yanking on my arm ( i guess the unbearable pain helped me to flinch more). The pain from the ,ump on my neck, through my collar bone, the area where your arm and chest muscle meet and into my armpit is horrible. The armpit pain is the worse. Stops me from moving my arm mainly backwards and out to the side. I see the spine specialist this morning for the results of the MRI of the Brachial Plexus. I am hoping there are no torn nerves but that he has some answers as to why I am having so much pain. Worse than before the surgery. Can I ask how you were dx?

ICC

 
Old 07-12-2007, 11:12 AM   #6
Senior Member
(female)
 
Join Date: Jun 2004
Posts: 110
Janice1033 HB User
Re: Thoracic outlet syndrome anyone???

Hi: First off I hope everything goes well with the Dr and you get some answers. Let us know ok

I was diagnosed with this after I had a cervical x-ray and the tech reported
elongated and downward sloping transverse processess at C7. Not to sure what this means except that it is associated with TOS.

I have a birth mark on that arm which the scare tissue ( infection when I was a baby ) goes from elbow to into the upper chest. It would always hurt real bad when I hit it so when the pain started in my upper arm I really thought it was just the BM again. That was about six months ago and has just gotten worse since then.

I had a dopler ultra sound done and guy said that he could not see alot of difference from one side to the other so not to sure if this means it is not Vascular or not????

Well going to rest my arm from this typing thing so please let us know how your Dr's appt went.


Janice

 
Old 07-13-2007, 07:32 AM   #7
ICC ICC is offline
Inactive
(female)
 
Join Date: Jul 2006
Posts: 3,265
ICC HB UserICC HB UserICC HB User
Re: Thoracic outlet syndrome anyone???

Hi Janice........TOS is very confusing to say the least and from what I'm told not dx alot of times. I saw the surgeon yesterday and all is well. No TOS, nothing wrong in the entire Brachial Plexus area. He feels it is all coming from the shoulder surgery and the aggressive PT I had two weeks after surgery. She really messed me up. Since I also have cervical issues he feels everything is inflammed and swollen because of PT going to fast, to strong. The two steroid injections I had last Tuesday have eased the pain maybe 90%. I work my arm twice a day on my own. Went back to PT today and of course some of the stretches they made me do have it a little irritated right now. A slong as it eases up by tomorrow I'm happy. That's the way PT should work. No harm in hurting that day but i continued to be in more and more pain everyday with no let up. I told the PT today that I will not let him re-create the pain I had for 6 weeks. I'm joining an indoor pool on Monday and will do some work myself. I have a bad back that's starting to act up so I'm hoping this helps the whole body. I lucked out. I feel for anyone who has TOS. It's hard to treat and very painful. Wishing you the best.

ICC

 
Old 07-13-2007, 09:45 AM   #8
Senior Member
(female)
 
Join Date: Jun 2004
Posts: 110
Janice1033 HB User
Re: Thoracic outlet syndrome anyone???

Hello ICC: I am SO HAPPY for you, what a relief that you did not have contend with something else.

I hope all goes well in PT and swimming and you are as good as new really soon. Keep me posted even tho we are not TOS sisters I am still interested in how you are doing.

Take care
Janice

 
Old 12-21-2007, 08:58 AM   #9
Junior Member
(male)
 
Join Date: Jul 2003
Location: webster,tx
Posts: 46
payton HB User
Re: Thoracic outlet syndrome anyone???

have any of you heard of elevations in blood pressure in chronic TOS due to the compression of the vagal nerve. incase you are not pruvy to the vagal nerve situation - it is a cranial nerve that passes through the medial scalenes and anterior scalenes (which are major components of TOS) on its way to innervating the diaphragm, heart, GI, and other anatomical structure. it plays a major role in heart rate and BP. well i have had severe TOS for the last couple of years and about a year ago my BP has gotten pretty high at times, just curious.
-Thanks ahead of time

Last edited by payton; 12-21-2007 at 09:00 AM. Reason: forgot info

 
Old 01-04-2008, 10:45 PM   #10
Newbie
(female)
 
Join Date: Jan 2008
Location: Antioch CA USA
Posts: 1
badarm HB User
Re: Thoracic outlet syndrome anyone???

Maybe this is way too late to help anyone...a friend just diagnosed with TOS FINALLY by a DC who does NMR (neuromuscular reeducation). I had frozen shoulder for four-plus years with some of the same symptoms but much milder; I had to come out of pocket for the non-insured work, but PT did me NO good and only made things worse. As I thought about it more and more, and finally got down to praying about it, I used "frozen shoulder" on the net and immediately found the DC who does the NMR, looked at the pictures on his website and figured out immediately my problem was probably adhesions. Went to him and had virtually full range of motion (ROM) in 2-3 visits, but had to have much more work with deep muscle massage to break down the adhesions all around the area. I still have some tingling of the 4th and 5th digits of the other arm, but I'm going to get that treated the same way. I truly believe most of the surgical approaches are probably totally unnecessary. My friend with the really severe TOS, with vascular and nerve compression, is getting similar rapid results; she actually had the white hand symptom, seizures (probably at least somewhat related but history of concussions here), chest pain, TIA -- all part of or impacted by the TOS. She has had myoclonic activity (brain-muscle waking seizure activity generated in the cerebellum from the TOS), abnormal temporal lobe activity connected with the myoclonic activity (awake EEG). She is on the mend, has warm hands for the first time in years, etc. I HIGHLY RECOMMEND GOING OUT OF POCKET IF NECESSARY TO GET THE CHIROPRACTIC NMR: I BELIEVE THE PROBLEM IS NEUROMUSCULAR EVEN IF IT'S POST-TRAUMATIC/POST-SURGICAL, and I believe the initial surgery may well be unnecessary in most cases. Even if surgery were necessary, reconditioning the muscular support of the whole area will only benefit recovery.

Get on the net, look for neuromuscular reeducation and chiropractic, and give yourself a new lease on life!

 
Old 01-05-2008, 01:08 AM   #11
Junior Member
(male)
 
Join Date: Jul 2003
Location: webster,tx
Posts: 46
payton HB User
Re: Thoracic outlet syndrome anyone???

you know, the only relief that i have had.....when the entire spectrum of options has been visited was chiropractic therapy. i truly believe that in years to come chiropractic will be the new approach to musculoskeletal disorders. i had two herniated discs in my neck about 4 yrs ago from playing collegiate sports and i have taken them all.....soma, zanaflex, flexeril, valium, pain killers of various types, i have been run through the pharmaceutical marry-go-round(all of which are accompanied by rediculous side effects that are a pain in the rear to deal with). i even had one doc try to put me on antidepressents which i did and til' this day have not been able to shake the GI disturbances that they carried with them. not to bash the medical side of things but when your dealing with TOS or frozen shoulder or any neuromusculoskeletal disorder what meds are gonna just make it go away.....none. atleast thats my experience. now i'll be the first to say that if a get a chronic cough i'll be in my PCP's office getting somthing but from my discoveries in regards to these issues they will do nothing for it and even tend to get frustrated accusing you/me of being hyperchondriac.....which in my case could not be any further from the truth. i seem to think that they(PCP's/MD's) tend to get a little affended or taken back by someone who has taken their health into their own hands and decided not to fall victim to undue medicated times. anyway enough about that soap box there is good in everything and there is bad in everyhting i just think that now more than ever with pharmaceutical companies having so much clout and that pressure falling squarely on the shoulders of MD's out there trying to practice and do what they think is the right thing - you have no choice but to doubt their motives and what their external forces (ie...political influences, kick backs, campaign donations....etc.) it is up to us the consumer and PT to take our conditions into our own hands and have atleast a base level of knowledge ready to rebutle their opinions or you will fall victim to the propaganda that is being forcefead to us (americans) on a visit by visit basis. this is all very opinionated and by no means did i want to or intend to affend any body. i truly believe that the majority of man kind is good but at the same time money adn politics rule this country and right now the pharmaceutical industry really needs to be put into check. THATS A FACT. i'll finish this up where i got distracted....the only thing that alleviated my SEVERE pain the indeed did rule my life at one point was CHIROPRACTIC CARE. its an all around alternative that NOBODy should overlook. i was offered surgical methods and did steroid injections in my discs for a while(by the way played major games with my blood sugar levels, happy to say all have subsided now after about 11 months) but still. i think that the western world(health industry isolated in said case) has it backwards. non invasive teqniques and non medical/holistic/hebejeebee's therapy- whatever you wanna call it prior to any synthetic source or exogenous source coming in to play should and needs ot be fully explored. it fixed me and i was 4 months from having surgery on a 29 year old neck. screw that. traction therapy and all the other modalities he incorpoorated into our sessions has me palying golf, jogging, lifting weights, sleeping in whatever position i so choose and the biggest one of all; side effect free cause at the current time i take ZERO med's and thats a blessing. i wish you all the best. my only advice in closing is build yourself a little knowledge base before you step in their office concerning your own theoretic diagnosis. if your off then what the heck you tried but if you read up and your right then you can together make a decision that best fits you instead of going with whatever they(PCP's) prescribe. do it together have some say so. they are extremely educated and worked hard to get to that spot but that does not mean that they unwilliing to say "hey you know what, i dont think i can help you. let me send you to this chiropractor/PT/or whoever that i know"

 
Old 07-18-2008, 01:52 PM   #12
Newbie
(female)
 
Join Date: Jul 2008
Location: Hancock, IA, USA
Posts: 1
shonaw HB User
Exclamation Re: Thoracic outlet syndrome anyone???

I am having my 1st rib removed on July 23, 2008...and i'm very nervous. Not about the surgery, but about post-op. I have researched the surgery, but can not find anything on post-op. Can anyone shed some light on this for me. The only I was told is I will be in the hospital for 2-3 days.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Thoracic Spine Herniated Disc colleen b Hernia 19 06-30-2011 08:50 PM
Thoracic-Outlet Obstruction syndrome??? BluBird Spinal Cord Disorders 11 03-31-2009 03:22 PM
Anyone with TOS?...thoracic outlet syndrome zephyrqueen Neuropathy 8 05-20-2008 07:18 AM
Thoracic Outlet Syndrome cind General Health 7 12-21-2007 09:22 AM
Need info on Thoracic Outlet Syndrome JennMomTo3 Brain & Nervous System Disorders 6 12-21-2007 09:16 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



Stepper (3), robertb (3), ladybud (2), cerse (2), melly88888 (2), skiperdee1979 (1), Jurgy (1), Pyloricstenosis (1), Rickie56 (1), Ian113 (1)

Site Wide Totals

teteri66 (1164), MSJayhawk (997), Apollo123 (898), Titchou (832), janewhite1 (823), Gabriel (758), ladybud (745), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 12:19 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!