Our Symptoms of thoracic outlet syndrome
 

Hello,friends Thought I would start a thread with everyones help.I guess I will start with reporting what my symptoms are,we could see how similiar they are:
First might I say sit @ stand up straight,Posture, Posture!!
Watch for forward neck posture!!
1. Pain and very tight muscles in my neck, feels like a rubberband, very, tight, limited range of motion up@down-side to side.
2. Burning pain from the left side of my neck down into my elbow and hand, cramping in both forearms.
3. Hands that are constantly cold and sweating,hands have white apearence
4. Numbness in both hands especially the ring and baby finger
5.Tingeling feeling in my neck,and shoulder's and arms and hands
6.pain in scapular area,starts with pinching,burning
7.a toothache like feeling in especially my left shoulder
8.I have to fight hard to continue using my left arm because of the pain
9.Arms that feel tired,useless because of pain,weakness
10.headaches from hell
11. clumsy hands
12. Activity with hands or arms reaching at any level, carrying, pushing/pulling, sitting for pro-longed periods,repetitive neck movement, bending down at the waist, looking down
Things that help:
zanaflex in the evening when pain is at it's worst
tens machine
stretching to open my chest area up
posture related stretches
changing position
laying down flat on my back with my water pillow supporting my neck
showers,very hot
icepaks
celebrex
pacing my activities, while avoiding some all together
lyrica
Things that hurt:
driving
laundry,folding etc
carrying(especially with elbows bent)
lifting(some days even a coffee pot or a glass or cup)
vaccuming @ dusting
doing dishes
washing my hair
blowdrying my hair
make-up forget it
sweeping
sitting
anything that requires your arms raised or extended
(shopping isn't fun anymore)
I can't hang laundry on the line,or hang drapes etc.
All repetitive strain injuries
de-quervains tendonitis
compression of the scalene on the plexus(tos),double crush syndrome
mild cervical disc compression c5/6
bilateral carpal tunnel release/06
trapezius and rhomboid regional pain
Presently trying to control my pain,with hopes of being able to work again,and become more active.








Please add to the list,maybe it will help others::eek:

What image test confirms TOS and what were the results?

Good idea- we used to have a thread on this at the other place.

my symptoms now {they were much worse during 03-05}
If I'm at the computer/desk position - or lift or pull heavy objects -
or use arms above my shoulder/head height
{for all of the above if too long or too often}

My symptoms seem to be more vascular & fascia related than nerve pain related-- more of a positional & uses cause now.

soreness and/or triggerpoints in upperback
tight neck muscles
soreness across shoulders
tightness/pinching in armpits
fingers lose coordination
cramps in back of hands
triggerpoint/pain spots on top of head at times
still get the watery right eye
voice still is weaker and cracks at times

************************************************** *

compare with my old post from the BT cache:
December 16, 2004

Roos/EAST/Stick'em up test= 10 sec L hand white, 40 sec L gets out of sync with R, 1 min- have to drop arms.

PAIN & SYMPTOMS

Hands
Sharp cramping pains in back of hands- with use - like writing, holding small objects, picking up small things- pins, tweezers, toothbrush
Clumsiness of fingers
Fingers stiff sometimes
Loss of strength
Tightness in back of hands
Sharp stabbing pain sometimes when reaching around or twisting wrists = pockets, zippers, buttons
Occasional swelling and color changes esp. if arms elevated very long
Cold weather increases discomfort

Wrists
Sharp burning pain in wrist joints after use- handled large engineering documents–9/30/03 - OK now
Bracelet feeling - topside 2”- 3” from wrist, Left > Right Tightness/pulling in that area now when forearm gets tight
Fine sharp pains lengthwise 2” from wrist, underside only- minimal now
R wrist bone sticks up higher than L? Different shape ?

Forearms
Tightness and a deep ache on top side of forearm -elbow to wrist-
Deep ache is gone – tightness comes and goes with use
Mid forearm underside aches- minimal now
Tingling/ tight/pulling/stinging sensations just under skin- with use
Hypersensitivity sometimes on top side
Left worse than Right -usually

Elbows
Spots of tenderness above and below joint after moderate lifting or use
L > R - elbow puffy and slightly numb at the inner crease area – minimal now
L > R - sensitivity to fabrics and light pressures – minimal now
Ulnar nerve symptoms 11/03 – 2/04 –upper body therapy {neck/shoulders} resolved most sx
Point of both elbows get sensitive and have a small sore spot sometimes --NEW -11/04 - mostly gone now 1/05
When arms are extended palm up- wrist planes and elbow planes don’t match ??
When R shoulder is very sore can’t rotate R arm fully to extend it forward –1/12/05

Shoulder- R & sometimes L
Sharp pain and a pulling pain when reaching to the side up/out and to the back -less now but still sometimes after any moderate use
Crunching noises sometimes- minimal now
Stiff, sore and tight some mornings after sleeping on that side

Neck
Tight, strained, sore spots – usually have to stretch daily to keep loose
Crunching noises - minimal now
Sometimes feels like I’m wearing a tight necked shirt
Sometimes feels like my collar bones are getting pulled upward into my throat
At times it felt like I could hardly hold my head up
Whooshing pulse sound was on right side of neck –summer/fall 03, now more on left side - positional / tightness combination? Bruitt?

Upper Back & Upper Chest
Tight, burning and achy spots in upper back when head has been in a forward or downward position for any moderate length of time- better now since off work but starts if I read a book for too long or do gardening
Tight, strained, heavy feeling if arms are forward/elevated very long
Sharp pains or dull aches at times under shoulder blades and in various muscles in upper back—after moderate use
Armpits/Pecs get tight and strained feeling at times

Misc.
Vision changes {comes and goes}= Double/blurry, light sensitive, more floaters, very watery
Dizziness / lightheaded problems mostly occurring in 8/03 – 2/04 Headaches at back of head same time frame- none now
Memory fades same time frame
Concentration problems- fluctuates with symptoms
Stuffy ears and sinus- fluctuates with symptoms
Weak voice – cracks and scratchy throat- fluctuates with symptoms
Trouble swallowing - fluctuates with symptoms
Over doing of activities causes trigger points or spasms in upper body
Weakness, fatigue and heaviness of arms, shoulders and upper back when holding arms out or up- while driving I need to change arm/hand positions frequently
Delayed pain after use
Hypermobility is an issue also

My self treatments

Rest, Heat, Ice, Stretching, Hydration, Self massage
Trigger point therapy, Acupressure, Relaxation/ Breathing
Walking/Yoga, Postural awareness & ergonomics
Vitamins & mineral supplements
Chiropractic care

annhere- do you mind if I make the testing for TOS a new thread?

Symptoms
 

Hi there..

Just recently got DX with Artierial TOS

My hands swell, and pain the ring and baby fingers
Back of neck is sore to the touch
Right shoulder, collarbone area feels like someone sitting on it
Left forearm just started hurting
Left hand swells
Left armpit/shoulder area is now hurting
Left arm is useless ! (kidding)

What do I do ?
PT ( not helping)
Take meds
Heat

But an MRA MRI with Contrast dye is how they saw the conmpression of the subclavian artery. It took me 2.5 years to get a Doc. to get the test done.

bump up for newbies!!
 

I'll get to this soon !!! :o

Symptoms
 

Jo55.....wow...sounds like me almost to a tea....Hairdresser....I hate shopping too. My P/T tried sometime new the other day, tried to move the first rib by pushing down on my shoulder....never again..within an hour the pain was wicked. Still waiting for word on my surgery, could be a years wait is what they said to me. I'm going to just keep calling....want to be able to shop again soon...lol. (sometimes all we can do is make a joke now again..)

Rachael-
did they push on the neck/shoulder, closer to your neck than the actual shoulder?? Or on the outer edge of your shoulder?

I've had mine mobilized a couple of times and it did wonders for me, the chiro would do a gentle tilt thing for it too sometimes.

The PTs did mine with slow steady even pressure - closer to my neck than the shoulder.

I found my old post in the cache -
top rib mobilization -by excellent PT guy-

He just took the time to do a full hands on evaluation - and I had mentioned the "choking feeling" like my collar bones were being pulled up into my throat - so he said "let me try something"

He stood behind me while I was sitting on the table and pressed with steady firm pressure down on top of my shoulder close to my neck {1 side at a time} just a short time then stepped back and yo see how far that area had lowered {1/2"}- so he did the same to the other side too. it didn't hurt a bit & I immediately felt looser in my neck & it relieved that costoclavical sp? compression. the "choking" and very strained neck feelings.

He also told me how to tell if it popped up again and it did during my PT exercises at a different place.
I had told this other PT about it and he mobilized it with a different technique- diff position but same pressure & area.
He had done eval on me 3 days earlier and didn't check for that even tho I told him of the choking feelings and collarbone pulling into neck feelings.

You might have to just tell them {PT?MD?DC?DO} to check for elevated top rib - they may not check it on their own.

And the chiro did a top rib adjustment a couple times after that but it would feel weird/tilted for a couple days - but then fine & still now.

Jo55
 

He was closer to my arm at the top part of shoulder. At times he has done stuff around my neck which felt great, but this didn't. This guy is great. He know almost nothing about TOS but has read what he can to try to treat me. He is also the only one who said from day one it was TOS. I am going to try to gather some info to take into him so he can try some new things. He does nerve glides (twice a week now for two years) and it helps manage the pain, but does nothing to fix.

do you ever lay out on the floor and just let your shoulders relax down and the chest & pecs will gently stretch and loosen?
with arms out at a comfortable place - maybe a very mild stretch.
I use a yoga mat for a bit of cushioning {laminate floors}
That helps my neck loosen up too.

a new thing chiro is doing -
places my arm behind and across my back, then massages deep in the soft front of the shoulder area and around and under the scapula.
the first time he said - "you might think I am killing you" LOL
but it wasn't too bad just pretty tender, and since then just feels good

I should look it up to see where/what he is working on there- haven't got around to it.

Test to comfir, TOS ?
 

Hi there everyone ! I had a regular MRI amd then an MRA with the dye contrast and after 3 years, that test showed a subclavian compression in the neck on the right side... Hope that helps..

Bumping up for more symptoms to be listed.
I think the list is really helpful for newbies or any of us that get some new thing happening.

I still have most of the symptoms mentioned in the first post of this thread even though I've already had a first rib resection.
Don't have sweaty or white hands and no headaches.
Post surgery I've had a pinching feeling in my armpit that after several minutes feels like a bee sting. Usually only lasts 10 minutes all together.
Pain, like someone gave me a noogie (no clue how to spell that) on the upper right/center of my chest. Comes and goes.
Increased weakness. I usually hand wash dishes but seem to be having more trouble holding on to slippery, soapy dishes. Basically minimal grip strength.
Ulner nerve has been going beserk.
Burning in forearm and pain in wrist. Again, post surgery problem.
:) :grouphug:

Here's Me
 

Symptoms before surgery

Severe swelling and blueness in left hand
Weekness in hand especially ring and little finger
Pain in chest on left side (worse at night)
ache in left shoulder and down forearm
fine motor skills messed up
couldn't concentrate on anything
lightheadedness off and on
depression

Meds:

Took Neurotin for about a year
Ambien to sleep
Zanaflex
Given two injections in neck(did no good)
6 months of PT
Tens unit daily

Surgery(1st rib and scalene muscle removed (9-05)

Symptoms after surgery

Problems at times with tightness in muscle at shoulder blade
Toothache feelings in shoulder at times
Still have fine motor skills problems, but not as bad as before

Meds:
Soma(muscle relaxant) only when needed

Things that help:

Hot baths and showers
Walking(keeping active)
Streches
Resting when I know I need to
light massages

Peggy

okay, finally...
 

I'm going to tackle this. Right now!!

For now, I will post my post my post decompression surgery symptoms...

1. Pain and very tight muscles in my neck.
2. Burning pain from the left side of my neck down into my elbow and hand. Cramping in both forearms. Hurts to straighten fingers.
3. Hands that are constantly cold and have a mottled apearence or turn purpleish.
4. Numbness in both hands especially the ring and baby finger. Lack of fine motor skills in fingers.
5.Tingling feeling in my neck, shoulder's and arms and hands.
6.Pain in scapula area, starts with pinching, then tightness and burning. Can evolve to a knife like piercing sensation.
7.A dull ache especially my left shoulder, also my left chest area. Can evolve into a intense, sharp, excruciating pain that has in the past led me to believe that I was having a heart attack.
8.I have to fight hard to continue to use my left arm because of the pain and weakness and I am left handed.
9.Both arms feel tired, heavy,akward, clumsy because of pain and or weakness
10.headaches that last for days. Sometimes I can't tolerate noise, as in speech, the phone ringing, talking on the phone, light, for days. I will usually spend that time in bed. Maxalt helps some. These headaches usually come when I have overdone, not paced myself.(Usually due to mandatory Attorney/w/c/ appts. QME's, as in stress, and pushing beyond my abilities)
11. Difficulty swallowing at times
12. Activity with hands or arms reaching at any level, carrying, pushing/pulling, sitting for pro-longed periods,repetitive neck movement, bending down at the waist, looking down are very limited and if over done will send me to bed for days.

Things that help:
hot baths
very gentle stretching to open my chest area up
posture related stretches
changing position
laying down flat on my back with my moshi pillow supporting my neck
icepaks
pacing my activities, while avoiding some all together
Peter Edglow protocol
Neurontin
Norco
MS contin
diazapam


Things that hurt and I don't do Anymore:

driving
laundry, folding etc
carrying (anything over 3 to 5 lbs. )
lifting (some days even a glass or cup)
vaccuming or dusting,doing dishes... basically any house cleaning
washing and blowdrying my hair, my hubby helps, hubby cuts it as well as it's too hard to get it cut professionally, too painful...
I wear make-up-only on rare ocassions
shopping isn't fun any more
no more gardening :Bawling:


If it weren't for my dear husband, my parents,my oldest son, my daughter in law (his Wife) and my dear friends, both here and "out there" I'd go crazy.

I don't feel like I have a life anymore. There is so little I can do, so little that remains of "Me".

Most people don't know how to respond when I say I can't do.... ( you fill in the blank) They tell me I look so healthy, and will push me to try things. Which just frustrates and hurts me all the more.

I guess that is it for now...Hope this can help others!!!

G ~ :)

Now I realize that I've had some of the symptoms for ~1.5 yrs. It started with:
-Left arm swelling
-Left arm pain
-Left hand changing color
- Dull ache that changes to sharp pain in shoulder blade area
- I actually went to the doc so he could check my cholesterol, BP, etc to
be sure that I wasn't having a heart attack. TOS never crossed anyone's
mind.
- Left shoulder pain - I had SLAP lesion repaired in 3/2006. So, I think that
the shoulder injury pain masked TOS pain, but can't be sure. I also had a
nerve block (I believe of the BP, they did it on my neck/shoulder area to
numb my whole arm)
- Then I started to notice the numbness/tingly feeling in my arm, which pretty
much everyone attributed to the shoulder surgery.
- My entire arm continued to hurt, the numbness spread from pinkie/ring finger
to my entire hand
- The NEWEST addition to my list is the "choking/tight shirt" pain at the base
of the neck (i think thats the scalenes acting up).
- I also recently noticed that typing is harder and that it feels like I'm losing
some dexterity in my left hand.
THINGS THAT GIVE ME RELIEF:
- exercise (the elliptical at the gym b/c it is low impact and you don't have to
swing your arms. Helps both physically and mentally
- nerve blocks (Brachial plexus block in my arm) & trigger point injections
- goosebump (spikey balls) between my back and the wall
- GENTLE streching
- Keppra (anti-convulsant for the nerve pain)
- Hydrocodone/Apap
- Focused relaxation (i.e. from "Managing pain..." or if you've had a child and
used the Bradley Method, the relaxation techniques used there help too.
- Staying busy - whether it be work or a hobby, keeping your mind occupied
seems to help by not letting me focus on my pain.
- Our nightly chats - keep me laughing .... LWN!
- Heating pad
Sorry to ramble....hope this helps, even just a little

I've noticed a few people say they have a choking sensation or a tight feeling in the neck....I wanted to comment on that. I had a level 2 fusion and have a metal plate in my neck now and thought at first before I was dx w/TOS it was from the plate but now I believe it's from the TOS.....Thks for the postings....I'm not crazy afterall

Ann

Well, I can feel typing going downhill by the second, but will try to post an answer here!

Symptoms started within a few weeks following a car accident (with a drunk driver :mad: )...had shoulder surgery after a few months, with SLAP lesion repair, reconstruction of some torn ligaments, and several other repairs to the joint. Also have sternoclavicular instability, which contributes to TOS problem, as well as damaged scalenes, and may have some direct brachial plexus injury.

Also had a two-level fusion last August, C5-7; had hoped for more improvement in arm/TOS symptoms. Didn't relieve any of that, but did help with neck spasms and headaches.

-Stabbing pain under left shoulder blade; worsens with pressure against the shoulder blade, such as leaning back in a chair.
-Pain and tightness in traps on left
-Pain and lots of swelling above clavicle (this is where the pain is usually worst)
-Clavicular instability--rotates up and forward, and that causes pain all across clavicle and to sternoclavicular joint
-Deep achey pain in upper arm, with muscle knots
-Pain in left side of neck
-Numbness along outer arm and into left hand; this started with the ring and pinkey fingers but now is entire hand. Numbness and clumsiness worsen with activity (such as typing!), and ANY fine motor work with left hand. Fine motor activity also causes a lot of pain in bp area above clavicle.
-Numbness across back of shoulder to side of neck
-Numbness in left side of face, along with some eye twitching and occasional droopiness of eyelid on that side when things are really flared.
-Recently, occasional hot/burning feeling along outside of elbow and upper arm; sometimes my whole arm feels warm, both inside and to the touch.
-Muscle spasms along outer arm/elbow area, and sometimes across shoulder/neck area
-Fingers on that hand want to curl, especially when in a bad flare. Straightening them causes pain in bp area and hand. Also turning my hand supine (palm up) is usually very uncomfortable.

Things that worsen:
-Everything? Well, almost any use of left arm worsens things, but especially fine motor work with my hand; typing is also getting increasingly difficult. Folding laundry, ironing, sewing (sold my sewing machine :( ), any pushing/pulling motion, anything involving using my arm in front or to the left side, such as holding a tomato to slice it, etc. Of course, overhead activities with left arm are out. Lifting as well, usually even as much as a coffee cup.
-Letting my arm hang without support, either sitting, standing, or walking. Ugh!
-Driving (although yesterday I actually went out! Drove! Visited friends! Felt okay! Paying for it today, but I so enjoyed it!)
-Doctor's exams!!!
-Delayed pain is pretty common, although lately the delay seems shorter, and sometimes nonexistent.


Things that help:
-Stopping the activity. I don't work outside the home; I'm very grateful for that, as there's NO WAY I would be able to. Many days (especially lately) even keeping up with the meals and housework have been difficult or impossible; my family's taken over a lot of this.
-Sometimes massage helps, but usually makes things worse.
-Pain meds, Zanaflex
-I think a hot tub would help if I had one! Still hoping!
-Lying down with pillows to prop arm on
-Pillow in lap, or armrests to keep support under my arm. I also have straps sewn into my clothes for a "sling" when I'm up and about.
-I've tried some gentle TOS stretches; sometimes it seems to help, sometimes not, and sometimes makes things worse. Seems like it helps most when there's a lot of muscle tightness (makes sense!)

Gotta stop...Take care, all! :hug:

Hairdresser ,
I Noticed You Said You Have Eye Pain. Mine Is So Severe It Keeps Me Up At Night Along With My Neck And Shoulders. It's So Bad I Can't Even Think Straight. My Eye Sockets Even Hurt. I Have All These Symptoms I've Read In The Other Post. I Hope , When I Have These Extra Ribs Removed It Gets Alot Better. I Wish You Well.
Cheryl

everything thats listed above is true for myself,there is a few thats not listed that i would be happy to put.
1/teeth very sensetive
2/very uncordinated walking but not constantly
3/head starts bobbing when on a high scale pain
4/blood pressure changes from laying down and getting up
5/showers are not a good idea the pressure beating on spine causes body to start shaking.
6/electric heaters are a trigger for enhancing pain
7/sensativity to light too bright

bumping up-
so more personal observances of symptoms can be updated or added.

Hmm, let's see if I can remember all the physical symptoms I've had since the start right after the car accident:

In ER:
-stiff neck
-inability to turn head and more than a few degrees any direction,
-pain in back of throat when swallowing,
-some chest pain
-burning pain going down my right arm.

The next three or four days:
-Felt like I had, indeed, been rear-ended by a Chevy suburban.
-tops of shoulders were incredibly sore,
-couldn't pick up the 5 pound water jugs I had just purchased at the grocery store right before the accident without shooting pain going up to my neck. Very uncomfortable.

For the first three months:
-gradual decrease in neck pain and shoulders symptoms, however easily aggravated by carrying too heavy of a work bag (I still carry small, light purses only!).
-Lots of scalene muscle pain, especially when lifting.

For the first nine months:
-pain levels settled down,
-however my neck muscles would spasm, locking up again if I over exerted my upper body. Was doing strengthening exercises such as push-ups and working with exercise band per physical therapy instruction.
-otherwise, upper body was okay

Then:
-Started feeling tingling in my fingers when typing on my laptop.
-Took a week break and when I went back to typing, developed pain in my shoulders, elbows, wrists and fingers bilaterally one morning while sitting at the computer.

Symptoms over the last year, in descending order:
-burning of inner wrists
-ulnar nerve distribution pain that felt like ice going up my forearms
-diagnosed with flexor tenosynovitis and TOS
-loss of cervical lordosis (curve) in neck
-tingling and numbness of my hands, fingers, and forearms
-inability to do the dishes, dropping items and loss of hand coordination.
-horrible, burning shoulder and elbow pain during physical therapy for TOS
-burning pain switched to back of wrists after six months
-still have occasional neck pain with particular movements or -picking something up that was to heavy
-negative EMG/NCS

Currently have:
-trigger points on back for sure, probably more elsewhere
-wrist pain that migrates from the front to back, though much better than a year ago
-weird finger and thumb pain
-weak grip strength, but am finally able to do the dishes again!
-back of hand and thumg pain when writing, hand pain when doing fine motor skills like fixing my glasses, old hobbies like making jewelry, and as someone else mentioned, hand pain with small objects like tweezers and fingernail clippers.
-tingling
-muscle atrophy of thumbs, hands and arms
-positive Doppler ultra sound for vascular constriction at 180°
bilaterally
-x-ray shows cervical ribs

Hi there this is going to sound strange but i am so happy to know that i am not crazy. That the symptoms i have are the same as others. I have just found this sight up till now i did not know any one with TOS so i have been dealing with this on my own and with the doctors and there are times they are at aw when i tell them the new symptoms i am having. I stared having a hard time driving about two months ago. My hands swell then the blood vessels start popping so i don't drive unless i have no choice.

My symptoms of TOS, diagnosis, helpful treatments!
 

Here's how I first found I was starting to get TOS, and how I improved:

TOS SYMPTOMS I had, at the beginning (several years ago):

1. heavy arms

2. tingly or numb arms, including little (5th) fingers

3. weird "alarm" feeling washing over upper body (front & sometimes back)

a. this happened more when I was constipated, I noticed, or hadn't urinated but needed to

b. this happened when I had to turn the car's steering wheel hard, like when turning into a parking lot from a street

c. this also happened when I ate sugary things

4. heart palpitations
---------------

CAUSES of my early stages of TOS were:

1. lifting too many heavy items, for work (it was a new line of work for me)

2. holding steering wheel too high up, (driving job), and, holding steering wheel with a "death grip"

3. bad ergonomics:

a. too much typing on an old fashioned typewriter

b. when I finally got a computer, I didn't realize that it was bad to have keyboard up on a desk (now, I keep keyboard on my lap, when "keyboarding")

c. when first had computer, didn't know I needed to get computer glasses (now I have trifocal power computer glasses, which are +0.75 power, and these allow me to sit about 3 feet from the monitor screen & easily read the screen)

d. didn't know I needed an office chair that was ergonomically good for me, and in my case, without arm rests. I bought a Situs office chair (many adjustments), which brand I first discovered at our local Physical Therapy clinic. See this link: http://www.situsinc.com/seatpg.htm
------------------

How I got the TOS DIAGNOSED: I saw Dr. Charles Brantigan, M.D. (Vascular Surgeon, TOS expert!) in Denver, Colorado, who had me hold my hands up (the "I give up"/Stick 'em up position), etc.

Before I got diagnosed, I had spoken with a local guy (stoneworker) who had already been diagnosed with TOS, and I noticed he had some similar symptoms to what I had been experiencing (numb arms).

This local guy was able to cancel his upcoming surgery for his TOS (that he was scheduled to have), by seeing a woman several times, who did "Aston Patterning" (a type of neuromuscular PT/Physical Therapy), that can greatly help many TOS patients.

Hearing about his good results, led me to "googling" for info about TOS, which I suspected I might have. That led me to Braintalk.org, where TOS patients highly recommended Dr. Brantigan.
-------------------

What helped me to DECREASE the early TOS:

1. Dr. Brantigan said I was on the way to getting TOS, but that I was still in the very early stages. He prescribed 10 sessions with an Occupational Therapist (OT) who happened to be a Feldenkrais practitioner (teacher).

Feldenkrais Method is a wonderfully helpful neuromuscular type of PT/Physical Therapy that is very helpful, for many people with TOS. The lady OT had a lot of experience helping TOS patients, and she helped me a lot! Her name is Charlotte Watership (not in Denver, now). Dr. Brantigan's prescription to see Charlotte, was "to evaluate workstation ergonomics".

2. People on the TOS forum at Braintalk.org, had lots of great advice, which taught me various things to try, that together with Charlotte's Feldenkrais sessions, were so helpful in lessening my TOS!

a. One of the forum people taught herself, which taught me, to put my keyboard directly on my lap, (instead of up on a desk),

b. Keep my knees a little lower than hips, when sitting, and with feet flat on floor, slightly forward of knees, and NOT to use arm rests while "keyboarding" (and no wrist rests, since they aren't needed when keyboard is on lap)

c. Get computer glasses, with power of +0.75 (or +1.00 power, for my "clip on" magnifiers, which I bought from an optometrist, but you can get at a fishing store too)

d. Use a very adjustable office chair (mine is a Situs, but there are other great brands too--Situs is not expensive, but is a really nice, good quality brand)

e. Be sure my monitor is not too high or too low, to prevent neck strain

f. Avoid sugar, which caused "flares"!!!

g. Avoid constipation & avoid putting off urination, which both caused me to have flares, like while hiking, shopping, etc.

Hope this helps! Good luck to all!

Carol (Concerned Lady)
http://cantbreathesuspectvcd.com

Thank You!
 

I have just found this site and so thankful to know that i am not losing my mind... I am at the end of the rope... I am saddened but so happy to hear that people have the same sx as me! I really thought i was losing it as did those around me! The pain is horrible.... I can share my symptoms... This may sound weird but i am trying to find out what type of medications you all are on so i can get mine changed.. don’t want to be on pain meds forever as i have already been on them for close to a year!
My symptoms are:

-Pain going down neck-shoulder-arm pit-elbow-wrist and then my fingers
-Neck and back spasms
-Pain in my jaw
-Headaches in the back of my head
-Numbness in my finger tips
- When i have feeling they are burning and hot...
- sometimes i get a static like zap in the fingers..
-Gnawing pain in the shoulder area
-When turning my neck... All of a sudden you will hear a large pop.. So loud my mom was able to hear it all the way in the basement when i was two levels above her
-Dropping things on the floor, inability to hold things in my right hand
-Stiff neck
-Sometimes a cold feeling in fingers... I was diagnosed with Reynaud’s disease a few years back... Wonder if that was a misdiagnosis.. I was also diagnosed with Tendonitis and Carpel tunnel!

Things i can’t do/or is extremely painful to do
-work
-write
-type
-cook
-blow dry my hair
- pretty much anything that involves my hand or arm is out of the question
-Drive my car : (

My doctor does not think this is TOS, even though when i lift my hand above my head during a MRI on my left said i have vascular TOS... However the pain is on the right? Does not make any sense to me..... :eek:....

I don’t get how my doctor wont refer me on to a neurologist or a vascular surgeon... I had trigger point shots and those failed to work... So they doctor claims its nerves? Then why not a neurologist...? I am truly at the end of my rope and so thankful to find this board! :)

Sorry to carry on... Just so glad to have somebody to talk to!!

Minnesota TOS-knowledgable docs & physical therapists
 

Dear Wildberry,

Here, in this forum, at this link (see below) are names of TOS doctors, Physical Therapists, etc., in Minnesota, etc., who know something about diagnosing and treating TOS, and/or diagnosing anything else you may have (along with TOS, or instead of TOS)!

Click on this link, and then scroll down to the Minnesota listings!:

http://neurotalk.psychcentral.com/showthread.php?t=135

Call them, and, read my message above, plus other folks' messages, for advice. Good luck! Don't give up!

Carol
http://cantbreathesuspectvcd.com

..... Any other doctors in MN
 

Hey there Carol...

The thing is... I have tried calling all those people and the only one still working is doctor j Ernsto... However he wont be back in the country until August 7th! I dont know where else to look on who else to see... .I am very scared and not to mention nervious about this whole thing.... My General doctor really doesnt beleive that this is a disease... So he isnt treating my pain or finding a soultion to the problem!

I am in so much pain... That he finally put me on morphine yesterday! The lyrica doesnt seem to be doing much... I just dont understand and its hard to believe the pain i have been in.... I am taking it out on my loved ones... Which i know is wrong... I just dont know what else to do... :confused: :confused:

I hope everyone is doing well.. Have a good weekend... And if you have any other dotors that work in MN that would be great!

Thank You Jacquelina

things to consider, and things to do!
 

Dear Wildberry,

I hope others in Minnesota can recommend a good TOS doc to you, soon!

Here's another idea: Call TOS docs who are outside of Minnesota, like in Denver, Colorado, and ask them who they know are good TOS docs (if any) in Minnesota! If you don't get any good answers, then:

Consider coming to Denver, Colorado, where there are several very good TOS docs! You could visit several of them, to GET DIAGNOSED.

Then, you could consider whether you want to get helped by them in Denver, or not.

In case you have something else going on, alone, or in addition to TOS, ask doctors about the following possibilities (at least), and take some actions yourself too:

1) Possible Vitamin B-12 deficiency (Rose is an expert at this, and can advise you more). Get the following blood tests done right away (I learned this from Rose):

a) Vitamin B-12 blood level
b) MMA/Methyl Malonic Acid blood level
c) Hcy/Homocysteine blood level

2) Right after you get the blood drawn for these Vitamin B-12 blood levels tests, go out and buy some "sub-lingual" (under the tongue) Vitamin B-12 (2 good health food store brands I know of, are Jarrow, and KAL (don't get "time release" type), and start taking it right away.

Rose taught us that "Methyl" cobal amin type of Vit. B-12 is better than the older "Cyano" cobal amin type of Vit. B-12. You could start with 1,000 mcg (micro-grams), once a day, or twice a day (under the tongue). Rose can advise you more.

3) Go over to another forum in this website, called "Gluten Sensitivity/Celiac Disease", in case you might have a gluten sensitivity. Cara is the resident expert there, about Gluten Sensitivity (whether Celiac Disease or non-Celiac types).

a) Also read Dr. Fine's "EnteroLab" website, about non-invasive stool sample testing for gluten sensitivity.

Gluten is a protein-like substance found in wheat, rye, barley, triticale (hybrid of wheat & rye), spelt, kamut (both are ancient forums of wheat), bulghur (used in middle eastern parsely salads), etc. BROWN RICE IS GLUTEN-FREE.

b) Try going on a gluten-free, milk protein-free diet for a month. Also avoid soy, corn (even though it's gluten-free), millet (even though it's gluten-free), maybe yeast, and maybe eggs.

c) Keep a detailed food diary, to see which foods agree and which foods don't agree with you (causing worse symptoms), and do this for at least a week.

4) I have some ergonomics tips, that I learned, when I first started to get TOS. Read and try these tips (I learned a lot of them from people at the TOS forum, over at Braintalk.org --many of those people are now here at Neuro.talk.org). To read my ergonomics tips, go to webpage 10 of my website, and scroll down to Appendix D (some ergonomics tips). Here's a link:
http://cantbreathesuspectvcd.com/page10.html

5) Ask about possible Arnold-Chiari-Malformation (can be born with, or can be acquired), in which the base of the brain (medulla oblongata) partly slips down into ("herniates" into) the top of the spinal cord, causing many awful neurological symptoms! Look at the forum at this website, about this, too.

6) In case of a possible medical emergency that may be happening to you, don't hesitate to call 911 (or get to an ER/emergency room) and see if they can call in a VASCULAR SURGEON who knows about TOS (thoracic outlet syndrome), for a consultation!!

7) WHAT ARE ALL MEDS THAT YOU ARE TAKING? I'M CONCERNED WITH POSSIBLE ADVERSE (BAD) SIDE EFFECTS!

8) ANY MOLD EXPOSURE?

9) ANY CHEMICAL EXPOSURES? (WORK, HOBBY, INDUSTRIAL, ETC.)

10) ANY SURGERIES? ACCIDENTS? INJURIES?

Hang in there, and don't give up! There is hope and help, and people at this forum will be along, to give you more advice!

Carol
http://cantbreathesuspectvcd.com

looking for MN TOS docs: pt, neurologist, ...
 

Wildberry,

have you found any more docs in MN? If so please share any names you come across. Thank you!

Wildberry
 

If your doc does not believe he needs to read Peter Pan...J/K
If TOS was NOT a condition there would NOT be a diagnosis, nor information and papers on it, mor surgeons who perform surgery on it, not physical therapists and doctors of osteopath and chiropractors and...
Nor would the 50 State's put RSI and TOS catagorized in their Workers Comp laws.

Bump for Denmark gal

The symptoms that I still have and will always probably have:

Swollen right arm and hand (due to subclavian vain that is no longer allowing any blood flow) Vains in upper shoulder, arm and chest distended, due to them compensating for the subclavian vein.

Occasional aches and discomfort, and numbness in the shoulder and arm. Once in awhile a shooting pain through the arm - comes as quickly as it goes.

If the temp. outside is low my hand will get VERY cold and painfull.

Other than what is listed above, I dont have to take any pain meds. or have any physical restrictions.

I have a new symptom now. A burning pain in right side of chest. It also feels like swelling there. Anyone else experience this?

How I was diagnosed
 

I had all of the symptoms but physicians were hesitant to acknowledge it, until I went to UCLA and saw Dr. Collins who specializes in TOS, he performed a brachial plexus mri, and it confirmed bi-lateral TOS without a doubt. After this the insurance companies had no choice but to recognize the diagnosis. Best of luck to you.:)

Thanks - for all this info - this is real!
 

This sounds very similar to what I have been experiencing for the past year - except nothing has been diagnosed.
My symptoms started after an injury - my R. arm is still larger than the left - throbbing pain which travels up the forearm into shoulder right through to neck. Tingling and pins and needles in arm and hand - swelling and tightness in hand and arm a year later! R. side of face started to swell/droop shortly after injury - somedays worse than others. Been on Lyrica/Naproxen/Amotrypralene/pain killers..........
This has been depressing not to mention a year out of my life in pain and disfigurement..........very dissapointed - at a total loss as Dr's have not been able to figure out or diagnose - which can be positive once the pain and swelling have gone.
This is the first time I have come accross something that explains what I am going through - and there is a name for this (TOS) Thanks!

Me too
 

Things that hurt:
driving
laundry,folding etc
carrying(especially with elbows bent)
lifting(some days even a coffee pot or a glass or cup)
vaccuming @ dusting
doing dishes
washing my hair
blowdrying my hair
make-up forget it
sweeping
sitting
anything that requires your arms raised or extended
(shopping isn't fun anymore)
I can't hang laundry on the line,or hang drapes etc.
All repetitive strain injuries




I hate doing laundry I have been asking me husband to put it away. I hate driving and I hate doing dishes....one of the things I hate the most? Just for a laugh because you didn't list it but I know you know what I am talking about... what you have to do after using the restroom....:(





Please add to the list,maybe it will help others::eek:[/QUOTE]

Chiropractor
 

One of the things I would suggest to all of you who suffer from this horrible new sucky thing I have encountered...is to have your chiropractor or physical therapists do a Heated ultrasound on the side of your neck. Oh my gosh...I think I could have actually fallen asleep for the first time in four months.:(

Requested bump - and for any updates.

Thanks again
 

Thanks Jo*Mar again for the bump. reading the list makes me realize all the things that hurt that I don't always associate with TOS or RSD. I used to just think I was old! I'm 45 but not in horrible shape, except for these 2 dreaded diseases! Linda:eek:

Don't forget we have an older thread of this also, which I started when this first opened.

We have the "Top 5 symptoms"

and then some threads on "All symptoms."

A few posts above discuss Dr. Collins (radiologist) from UCLA. In work comp, his findings are not dispositive as no other radiologists can "read" what he "sees" - at least in So. Cal. I love Dr. Collins - I haven't had his $17,000 image, but some here have - it went from about $8,000 since I first had TOS and keeps rising - (not his fault) - but he does spend a LOT of time explaining about TOS to the patients and if you CAN get your insurance to pay for it, then it is a great learning tool.

My surgeon (Dr. Annest in Denver, and I had a consult with Dr. Brantigan also) would not use Dr. Collins image, either. Each surgeon has their own imaging preferences, and I think Dr. Ahn will look (L.A.) at Dr. Collins image, but not sure of anyone else.

So these are just more tidbits to put in your TOS knowledge.

Best of luck to all.