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I would definitely recommend the doctors at UCLA. Do you know how to access
their website. They are definitely the "Gurus" of TOS.
DENISE

I know what it is like to go through a surgery like that and end up with no real
relife in the end. It sounds though like maybe you might need to give it some
more time. I was rather sore for quite a while and it went away. It took about
four months it seemed. Pain from that alone can linger. Mine got better and
then came back.
I now take three vicodin a day about and one vioxx. I find taht if I take the
vioxx
with the vicodin, i get more relief.
Good luck
Catherine

Hi All ,
I had surgery in Aug 2003 . I have been off work seeing chiropractors and
physios and still seeing a physio . My surgery has not seemed to help . I
started back at work yesterday . Today I am being sore again on the left .I
have it on the right as well. I am doing everything the physio asked me to .
Has anyone out there had surgery not helping at all , and used a pain killer
which helps . I have tried vioxx with no success what so ever .
In the emails people have been talking about a doctor @ UCLA . I am from
South Africa and I am prepared to travel anywhere in the world for help .
Thanks
Jeff

You should have already applied for medicare disablity; beware
it will take 2-3 years, you will get turned down first two times
and you will need an attorney. Since this is not work related I
don't think you can apply for work comp; also, i don't why in
the hell you are doing a job that has any typing whatsoever if
you have tocs; you should not be doing any work that is
repetitive with the hands. apply for medicare, get an attorney,
and find a job you can do even if it is babysitting. You need
to also call voc rehab in your state.

=====
Cathy

God Bless you Haley!, even though it may not feel like it some days, it's OK,
because you are doing great and on a new road of recovery :)with each new day
, surgery IS over and you are one more giant step away from the debilitaing
pain you had with tos.
Take care and just do the next right thing for you to heal, Lisa k.
(painfree and moving all about with the shoulder:)) never thought i would
write that. post op from different surgery ,more shoulder, 2 1/2 months

Hi -
I just wanted to say hello and realized that I had not checked this list ina
while
being that I belong to quite a few others and had my subscription set to read it
on the Web only. But I have been thinking to check in and also want to report
on how things are going with me and ask some questions of some of you.
I had my left rib resection and scalenectomy in June of 2002. By March of
2003, I was having pain in my collar bone area and sinc ethen, things have
gotten progressively worse to the point where I am ina lot of pain, almost
worse than before I had the surgery.
does this kind of pain and being misunderstood by others and not having it be
totally quanitifiable make you really depressed, It is making me both very
depressed and angry. In fact, my mother recently disowned me and accused
me of milking the system when I am just doing what I can to get by. On top of
TOS, I also have major TMJ problems and am facing a posibly open joint
procedure and a possible prostehtic joint due to extreme degenerative
arthritis.
This is all due an accident three and a half years ago. I am certain the TOS
was caused by being whipped around the pressure from the shoulder seat
belt. I also have a snapping scapula and my collar done is so out of place by
now. I can also actually feel the scar tissue crumblling around right above the
brachial plexus. Can anyone else actually palpate scar tissue at the sight of
injury?
State Farm has been denying me massage and PT for a long time now and I
am beginning to find out way to take action against them. By now, the Pt they
gave me a long time ago, is probably no longer relavent and seems to be
making me more sore. needless to say, i am angry. My doctor and her
assistant as well (mostly her assitant) repeatedly ignore me when I call to get
the office notes and the documents stating why State Farm is denying me
therapy. I know they feel it is because it did not help in the past, but it must
have helped some because by now I am in more pain than ever from all this!
I take 3-4 Vicodin 550 a day plus vioxx and the pain relief is not strong
enough nor lasting enough.
Dr. Sanders said that I can either live with this or have yet another surgery
whereby he can take out more scar tissue and relieve the pressure on the
nerves. I can't see going through that again and will it make anything any
better. But he says he has some way of reducing the bleeding so that less
scar tissue develops. I am wondering why that could not have been done the
first surgery? Maybe it's a different issue by the time it just comes to getting
rid
of scar tissue and not taking rib or muscles.
Anyway, I am getting sore from typing but I am desperate to know if any of you
have had a second surgery and if it helped and would you do it if you thought
it would help if the first surgery didn't work?
Also, have any of you applied for disabiltiy for this. i just cannot imagine
living
my whole llife with this! I'm freaked out by now. I'm 37, alone, broke, and I'm
terrified! I can't seem to get the help I need. I even called some psychologist
in
Denver here who runs a support group for those with TOS and does private
counseling and I can't even get her to call me back! I feel like I am in a never
ending nightmare sometimes and Like I fear ending up on the street over this,
now that my mother has disowned me and I know my father doesn't think I am
that bad off either or wants to believe it.
Help! Any advice appreciated. Should I go ahead and apply for disability just
in case?
Much thanks,
Catherine

Hi Haley,
I am glad to hear that you are doing well. My name is Myra, my daughter Laura
had surgery on Dec. 11th. Though we are new to TOS, I do have some background
with other medical problems. I would very much encourge you to get copies of
all of your medical records including the the notes from your surgery. This is
a play by play record of the surgery itself with their findings. You can go to
the records dept. at the hospital to request these, you may have to pay for the
photocoping. You should also request a copy of your medical file from your Dr.
They have to provide you with this information. I suggest that you get this
information, take it and get a couple of other opinions from other vascular
surgeons before you have a stent put in. The reason that Denise's Dr and my
daughter's cardiologist have urged both of them not to let anyone put a stent in
is because stent's can be a problem. If you are over the age of 50 and there
aren't any other choices then this is probably the
way to go. But you are young like my daughter and you have a long life ahead
of you... you probably don't want to be on blood thinners for the rest of your
life nor do you want to have repeated operations to replace a stent. So, you
need to make certain there are no other alternatives such as angioplasty before
you do this. My daughter had stenosis (narrowing) of the subclavian artery.
Her cardiologist told her.. "You need to find a "guru" Dr. who knows about TOS,
but if you were my daughter I wouldn't let anyone put a stent in there, even
though I myself, weekly, put stents into people who are much older. But we
simply do not have good studies about the long term use of stents with young
people." When Laura was seen by the "guru" at UCLA we asked if he would use a
stent, he said absolutely not. He said that he would try to free the artery
and take a good look at it...but no stent. Look at it this way... you may have
been very blessed that they didn't do that surgery at
this time and you still have the opportunity to really check this out. Maybe
the other Drs will concur and say that the stent is the only option but then at
least you will know for sure.
The only other piece of "motherly" advice I would give to you is this... try to
wean off of the pain meds quickly... try using advil, aspirin and/or tylenol.
My daughter also found that using a heating pad helped... but some people feel
ice works better. Usually, most Drs would tell you to ice for 10 mins then heat
for 10 minutes. My daughter was on lots of pain meds in the hospital...one of
them being Fentanyl which is much stronger than morphine. She had been taking
large doses of Neurontin and Ultram prior to surgery and she can tell you that
the withdrawal has been almost as bad as the surgery itself. The sooner you can
move to a more conservative approach the better off you will be. I hope this
helps and I am wishing you all the best for the coming year. Hugs, Myra
Hayley <hayley.justhayley@...
Hi,
Just wanted to let you all know how my surgery went...
I had my surgery on the 16th December and was in hospital for 5 days afterwards.
The surgery went really well although I was in alot of pain after it. I had a
pcas morphine drip in for 4 days after the op and after coming off that was put
on strong painkillers, which I am still taking now. I also had to have a chest
drain put in but I was warned beforehand that this might be necessary. It was
only in for about 36 hours and was at worst just uncomfortable. It was quite
painful while it was being removed but that was done quickly. The incision was
made under my arm and I was told it would be no longer than 2 inches. After the
bandage was removed last week I discovered it was actually 6 inches long. The
area around it it very sore. During surgery muscle was removed from the back of
my shoulder leaving me with limited mobility on that side and unfortunately
muscles were torn in the process of operating and nerves were over stretched. I
now have neuropraxia (which basically
means stunned nerves) but this will recover in time, I am just thankful that
nothing was severed. In the meantime I have no sensation in my arm below my
elbow but that will come back in it's own time. I started physio a few days
after surgery and have exercises to do at home to help get my movement back.
I have to say that even though I am still suffering from the pain of surgery,
since having it done I haven't had a single headache ( I was getting them almost
every day before) and I am not having the same pain that I was having before
which in my mind implies that the surgery has worked.
Due to my having no feeling in my arm the surgeon decided that putting a stent
in was a bad idea and I now have to have that done at a later date when my
sensations have come back. I wish that this procedure could have been over and
done with while I was in hospital but it's just one of those things.
Now I am back home and I can see that I am improving every day in small ways,
which is keeping my morale up. I do find it difficult to sit unsupported in a
chair, and do need lots of cushions to be comfortable, but I am getting stronger
all the time.
I wish I could go into more detail but it's hard to think, especially when I'm
dictating this and not actually looking at it as it's typed. (My boyfriend is
typing this for me as I am unable to sit at the computer for very long still and
typing one handed is difficult. ) If anyone has any questions about what I had
done, please ask. I am happy to answer anything.
Thankyou to everyone who helped me make my decision to have this surgery, I do
feel I made the right decision and am grateful to everyone who helped me along
the way.
Best Wishes,
Hayley

Hi everyone,
I was just approved for VOC Rehab through workers comp...I have had
TOS for 3yrs. now. I am curious to know what experiences people with
TOS have had with VOC-REHAB TRAINING, what types of jobs worked out
for them and what mistakes people made in training ect. I was a
dental assistant for 13 yrs. and lost a great career. This training
will cost me alot of time and i cant choose the wrong work. Im
afraid of reinjuring my self. I am doing alternative treatment for
TOS for the last time before surgery. Please let me know if you have
had VOC-REHAB and how it all went...Thanks much!!! RMM

Hi,
Just wanted to let you all know how my surgery went...
I had my surgery on the 16th December and was in hospital for 5 days afterwards.
The surgery went really well although I was in alot of pain after it. I had a
pcas morphine drip in for 4 days after the op and after coming off that was put
on strong painkillers, which I am still taking now. I also had to have a chest
drain put in but I was warned beforehand that this might be necessary. It was
only in for about 36 hours and was at worst just uncomfortable. It was quite
painful while it was being removed but that was done quickly. The incision was
made under my arm and I was told it would be no longer than 2 inches. After the
bandage was removed last week I discovered it was actually 6 inches long. The
area around it it very sore. During surgery muscle was removed from the back of
my shoulder leaving me with limited mobility on that side and unfortunately
muscles were torn in the process of operating and nerves were over stretched. I
now have neuropraxia (which basically means stunned nerves) but this will
recover in time, I am just thankful that nothing was severed. In the meantime I
have no sensation in my arm below my elbow but that will come back in it's own
time. I started physio a few days after surgery and have exercises to do at
home to help get my movement back.
I have to say that even though I am still suffering from the pain of surgery,
since having it done I haven't had a single headache ( I was getting them almost
every day before) and I am not having the same pain that I was having before
which in my mind implies that the surgery has worked.
Due to my having no feeling in my arm the surgeon decided that putting a stent
in was a bad idea and I now have to have that done at a later date when my
sensations have come back. I wish that this procedure could have been over and
done with while I was in hospital but it's just one of those things.
Now I am back home and I can see that I am improving every day in small ways,
which is keeping my morale up. I do find it difficult to sit unsupported in a
chair, and do need lots of cushions to be comfortable, but I am getting stronger
all the time.
I wish I could go into more detail but it's hard to think, especially when I'm
dictating this and not actually looking at it as it's typed. (My boyfriend is
typing this for me as I am unable to sit at the computer for very long still and
typing one handed is difficult. ) If anyone has any questions about what I had
done, please ask. I am happy to answer anything.
Thankyou to everyone who helped me make my decision to have this surgery, I do
feel I made the right decision and am grateful to everyone who helped me along
the way.
Best Wishes,
Hayley

Hi Catherine,
I feel for you, I am in the motions of getting my opp.
I am seeing structural integration practitioner and
he said mt collar bone is sitting well out, do you
think this will effect me after the opp, was you
collar bone always like this or just after the opp.
Does P.T help you..
Paul

Hi Everyone,
I last posted in November about my daughter's case of TOS connected
to syncope (fainting) and long heart pauses. Since the last time I
posted Laura has had a couple of hospital visits because of the
extreme pain in her chest and arm. Then three weeks ago she developed
extreme migraines along with her chest pain and her vision continued
to fail to the point she could no longer make out the details of my
face when I was sitting right next to her. A week ago she saw one of
the "gurus" of TOS at UCLA... a Dr Gelebert... She was hospitalized
through an ER visit. They did another MRI and a nerve conduction
study to rule out other possiblities, then they did a scalene muscle
block to test the outcome of a possible surgery. While the muscle
was blocked all symptoms ceased...so surgery was indicated and he did
a first rib resection and a scalene ectomy last Thursday. I am happy
to report that she is doing wonderfully. Other than soreness from the
surgery itself all symptoms are gone...NO More chest pain, arm and
shoulder pain, neck pain and migraines and she can see again... He
found that the scalene muscle was much larger than it should have
been for her body type plus she had a structural anomaly, an abnormal
muscle which shouldn't have been there... anyway I wish she had been
diagnosed much earlier and had the surgery a long time ago. So, for
those of you who are awaiting surgery... I can tell you that my
daughter's experience was good and I wish the best for all. Myta

Hi, that is so glad to hear. I wish I had a guru
surgeon in the UK, or even people who have had
experience with TOS, I feel so alone, mainly the
people with this condition are in the U.S. I have
been diagnosed a month ago with TOS and have had it
for ten years. I am in the uk. Am now on the
waiting list for more tests. EMG and Doppler test
which is seeming to take months. So frustrating they
wont tell me anything but your in a queue and have to
be patient. I am thinking of going to France to get
the my first rib removed as am in pain 24/7. Has
anyone have any information on a experienced TOS
surgeon in Europe??
I think a trip to the U.S is a bit out of my budget.!
Any information would be great. Paul (channel Islands)

Hi, I was also diagnosed with TOS this year. I told the surgeon that my right
arm, shoulder and neck wasn't too bad at the time and only flared up when doing
anything physical. Two days after seeing him the weather changed and got a lot
colder and damper, since then it seems like I have a constant aching on my right
side. I am trying a gradual return to work and am on my 3rd week. I seem to be
having to take T3's to get through my 4 hour shifts, some days the pain is
unbearable, with swelling and discolouration on my right hand, my left arm goes
numb from the elbow down. I really have to try and stick this out as my
disability benefits cut me off months ago and now my husband is on strike. I
hope some one can tell me this will go away and that my body will get used to
doing repetitive work again. I was ok until a car accident last year and then
everything as gone down hill since then. I am going to try acupuncture tomorrow,
as anyone had any success with it? I am keeping my fingers crossed it will help
me keep working.
Any info would greatly be appreciated.
Regards, Liz.

Pam ,I had to reply!
Wow I had all the same symtoms,and an identical mri expect for the disc . I
had surgery to repair the same tear you have and they removed the scar tissue
buildup and cleanup of tendonapathy. I feel better. see my previous email on
the site about my surgery and the TOS vs torn tendon mri report.Take care Lisa
k.

Hello,
I've just been diagnosed with TOS by my Ortho. I've had weird
symptoms for over a year. It all started last year during the winter.
My arm ached.
My PCP told me it was tendonitis in my elbow. I did as he told me and
the symptoms seemed to disappear during the summer months. Now that
it's cold again, the pain is back and worse.
I was wondering if anyone else has this problem with cold weather? I
haven't been able to read about anyone complaining about this.
Thanks

Hayley:
I would call my docs office this morning and tell them you are ill. Let them
decide what to do.
DENISE

I woke up this morning with a bad cold, my throat feels like it has razor blades
in it. So now I am worried what this will mean for my surgery if I am still ill
on Monday. When I had my pre-op assessment last week the doctor asked me if I
had had a cold recently (I hadn't) and said I need to try and avoid catching
anything between now and the operation. So I am very concerned about whether
the op will still go ahead. Does anyone on here know whether a cold will be a
problem?
I'd appreciate any replies,
Thanks,
Hayley

Pam,
Sorry to hear about your troubles. I am also a 36
y/o female and have basically all the symptoms you
describe. My physician also diagnosed me with TOS. We
have a very good specialist here in Pa. who strictly
deals with this alone. I have waited 2 months for an
appt. and see him on the 23rd. Like you PT, and
massage therapy did not help. In fact I think PT made
me feel worse. I have yet to find a med that takes all
the pain away. I am learning to adapt and try not to
do things which I know will cause more pain. (like
sitting here typing) Good luck to you and I will pass
on any info that I think will help. Have a great day!!
jorjie

I'm at my wits end. My symptoms have been increasing since about
last April, about nine months after my rib resection and
scalenectomy surgery. Along with the recurring and worsening
symptoms, my collar bone is sitting waay out of place and is causing
me a lot of pain. All a CT scan showed was that there is granulation
(probably scar tissue) and some edema in the area along with a mild
widening of the sternoclavicular space. Anyway, at times it just
kills me and hurts most of the time anyway. I have a second appt.
with an orthopedist in two days. My TOS surgeon would not really
address it why my collar bone is so horribly out of place by now and
the orthopedic doc I was sent to, said, I dont' know what that is
about. I only deal with shoulders. The MRI showed I had basic
shoulder impingement and tenonitis in the area. The TOS doctor, I
can tell, would love to do nothing more than reoperate. That is not
an option. I am beginning to feel sorry I ever had this done. Just
wondering if anyone else has out of place collar bones after a TOS
surgery.
Thanks,
Catherine

HI again, the TOS dr at Barnes Jewish,Washington university ( a top ten
hospital , told me if they found clots would be inserting a stent during a
venogram
procedure i had done. (I didn;t have the stint put in because ther was no
complete blokage so it was not done ).
Just wanted to say these Dr.s acted like that would be ok to have a stnt
put in if I needed to.
God Bless Hailey. and your in my thought and prayers as your surgery date
approaches , everything will work out for your best and soon be no more pain or
Blood clot risk like before:) it'll be ovver with before you know it and then
you'll be on the road to RECOVERY:) , Lisa K.

Hello All, and Hi Haley
this is Lisa K.. I am just now to the point of typing a little again and
saw your posts and wanted to let you know how my shoulder surgery turned out
and what they think now.also in caps at bottom are my surgery tipps
It was done outpaitient, I was told to stop taking coumadin at least 4
days prior (am on blood thinner due to venous collateral pattern and possible
spasms cause venous contriction clot risks).
I had a nerve block injection done, where they located the nerve
bundles by using a little shock device that made my arm jump like a relflex
test(
It did not hurt at all). They said that this would enable the dr to use less
genral anethsia over the 2 hour surgeryand would numb it like an epidural .
I was very nervouse the night before ,but in hindsight it turned out
good because i was too slap happy tired in the AM to be nervous when we were at
the hospital.
Right now i am mainly just very stiff. mild pain-finally. and the
shoulder feels very weak and difficult to move. they used steri strips on my
incisions 5 days later ,I took off the layers of thick bandages wrapping of
seveal
layers around the shoulder. I also woke up with my chest bandaged (across
breasts which i didn't expect),around it which held was a removable cooling vest
that i was to wear and refill using the cooler type device that that came with
it. for 3 days.24/7
I did not get sick from the genreal anesthia , they gave me something
before, and i woke up in no pain and did not ask for any pain shots. They said
to
take the pain pills that evening or earlier ,because when the nerve block
wore off i would be in pain. That they were not joking about. it felt like a
truck hit me for about an hour on that first day. the icewater vest helped alot.
I still can't drive and am still using a little pain med 2 weeks after. I
was told to get moving the shoulder and arm on the second day 4 times a day,
with different exercices that hurt to do but have freed up my mobility
greatly. I can now raise my arm above my head on its own. with little or no pain
They gave me pictures of what the surgeons saw and did during the
surgery. it was strange because from the front,right side and underneath
everything
was a pearly white/ normal . Than the view from the top of the roatry cuff
extending back towards the trapizius muscle looked like a big scary mess .
Thick bands of hard scar tissue and a bone spur and torn tendons that
looked really strange on these close up pictures. They had to cut away all The
big parts of the scar tissue(with some muscle fiber intermixed and open up this
area as well as shaving off the boney protusions and repairing the tendon.
One week later the scars form surgery are just three thin lines and i
saw the doc and he said all was great. Says he doesn't know what caused all that
banded scar tissue ,but it was thick and hard and could explain the
compresion on the vein in my arm pit area .Biggest thing for me it to avoid the
scar
tissue building up due to lack of activity after surgery. also he said the scar
tissue was binding tendons and muscle tissue into the tapizius muscle, that
would explain why i kept having muscele spasms in a flare up type way when ever
i used that arm shoulder.
Im glad i had it done !! and can tell something is difinately different
and better. ONE THING I WOULD HAVE DONE AHEAD WAS TO HAVE EVERY BUTTON DOWN
SHIRT ,PJ , BLOUSE AND THEN CAMIS VS BRAS ALL READY AND AVAILABLE ,
ALSO FOOD THE WAS SOOTHING AND COULD BE EASILEY EATEN WITH MY LEFT HAND.
READY- BEFORE I LEFT FOR THE HOSPITAL .GARMENTS THAT WERE THE LARGEST, AND SWEAT
PANTS WORKED ESPECIALLY WELL AND ACCOMMADATED THE BADAGING God bless all,
love Lisa k. IT WILL BE aOK:)

Hi
I was really glad to find this group. Hopefully someone here has
gone through all this and can give me some pointers on what to do
next.
I am 36 y/o female.
My symptoms -
Numbness in 4th and 5th fingers of left hand
pain/numbness from neck to hand along outer edge of left arm
pain in both wrists
pain on outer edge of left scapula
wrists and shoulder pop and crack painfully
pain can wake me up or keep me awake
I drop things unexpectedly....this part stinks!
progressive weakness in both hands - left worse than right
headaches
can't do a lot of stuff I used to be able to do because of weakness
in hands.
what I've done so far:
2 rounds of physical therapy.....some help but not much
LOTs of deep tissue and neuromuscular massage...temporary feeling in
fingers and only temporary improvement in grip strength and very
painful process to boot!
EMG
ECV
shoulder and neck x-rays and MRIs
So far here is what all the docs say:
Physical therapist - TOS
Massage Therapist - TOS - specifically anterior scalenes, pectoral,
omo hyoid etc.
Neurologist #1 - bilateral Carpal tunnel Left cubital tunnel
Neurologist #2 - yeah - what the other guy said.....
Hand Surgeon - have surgery now or permanent loss of strength in
hands...he said this almost 2 months ago
MRI's show tear in supraspinatus on left side, mild degeneration
(arthritis) in both shoulders, mild tedninitis on supraspinatus of
right shoulder and bulging disk at c5-6
Shoulder specialist I see tomorrow.............
and no pain relief from over the counter or prescription anti-
imflammatories....have to take Ambien to sleep some nights.
My job requires lifting 30 to 60 lbs which is usually done at arm's
length and shoulder high. Needless to say I can't do that right
now....
Workplace was just officially declared an ergonomic hazard last week
after a friend of mine said something to Occ. Health and they came
out to inspect......
any words of wisdom from anyone who has similar conditions?
I am confused and frustrated and not sure where to go next.
thanks
Pam

Never heard of prolotherapy.
DENISE

Have any of you had prolotherapy? I had it about every 2 weeks for a
yr.. I was wondering if it helped any of you

Hayley:
Hmmmm. All I know about stents is that my vascular surgeon said "Don't let
anyone put a stent in there." Maybe that was just his opinion. I had R and L
rib resections and then angioplasties following the surgery to open up the
veins.
DENISE

GOOD LUCK. i am in the same situation but dont have appt. yet.
To unsubscribe from this group, send an email to:

Hi,
I am going in for a first rib excision the week after next. At my pre-op
assessment this week I was told that when they operate they will also be putting
a stent in to hold the vein open. I don't really know anything about stents and
am just wondering if anyone else has had one put in during surgery. I was told
that they can clog up quite easily and cause a blockage which concerns me, has
anyone had problems with one?
I would really appreciate any info, good or bad,
Thanks in advance,
Hayley

Hi,
My name is Emily and I am 18 yrs old. I was diagnosed when I was 15.
I had surgery when I was 16 on my left shoulder just above the collar
bone. I am still in great pain and feel I am at the end of my rope
with my shoulder. Its nice to know others are out there though. Hope
to hear from you :)

Hi Paul,
I'm in the UK too so it's nice to see someone on here also in this country.
I was diagnosed with predominantly venos TOS and have been told that my only
option is to have surgery. I took a while to think it over and have agreed to
have the first rib removal and subclavian stent done. My surgery is due to be
done right before Christmas so I am getting myself prepared for it now. I am
nervous and I do worry about the fact it may make things worse but I feel that I
have to try it. Once I am recovered enough I will post on here to let you know
more about how the operation was for me.
Hope your TOS is not so bad at the moment.
Hayley

Hi my name is paul, and have been in constant pain on my left
side since the age of 16, I am now 26. I have seen so many
doctors, chirpractors etc etc I have lost count. So many
promises and still no relief. I was in France a few months ago
and went to see another doctor. He picked up that I didn't have
much circulation in my left arm within 5 minutes of being there.
Something I have never been told before. I have been having
tests ever since, and I saw a surgen yesterday in Exeter (UK).
He confirmed that I have TOS. It is so nice to know that I am not
going mad and haven't been doing this to myself all these years.
I am still trying to get my head round it. I have found this
website,
never really done anything like this before so not sure what
happens next. It would be so nice to talk to someone who has
been through the same thing. The suygen has offered to do
some surgery, to take away a part of my rib to free the arteria.
Before i go ahead would really appriciate any advice or
information on this opperation. look forward to hearing from you,
best regards to all.. have a good day . paul

Myra:
Sorry I know nothing about arterial TOS, only that it is very, very rare. From
what I have read, 95% of all TOS cases involves nerves, 4% veins, and 1%
arteries. I would try to find someone who specializes in TOS. Many doctors
have never heard of this condition. Probably a teaching hospital would be a
good place. The doctor who removed my ribs was at UCLA Medical Center in Los
Angeles, CA. I had venous TOS.
DENISE

Lisa:
Before positively diagnosing my TOS, I had an MRA of the chest and MRI of both
shoulders. The MRI of the shoulders showed: 1) Right shoulder: Degenerative
changes of the greater tuberosity and moderate osteoarthritis of the
acromioclavicular joints. No significant rotator cuff injury. 2. Left
shoulder: Mild tendinopathy of the distal supraspinatus tendon. No tear is
present. Mild osteoarthritis of the acromioclavicular joint with inferolateral
tilting and a type III acromion. Cystic degenerative changes at the greater
tuberosity. All of my life I had had weak arms. I am 45 years old. The doctor
didn't seem to be alarmed by these shoulder problems - I guess just a sign of
old age. My shoulders don't seem to be as movable as I would like them to be -
sometimes I can't reach to zip up a dress.
DENISE

Hi,
My 20 year old daughter has been newly diagnosed with Arterial TOS.
Her case is a little strange and I wanted to ask you all if any one
here has experienced this. First she has been positively diagnosed
through an angiogram. Her left subclavian artery totally obliterates
when she moves her head or arm into certain positions. (This is not
injury related and she doesn't have an abnormal structure, i.e. extra
rib or smaller rib cage) But the unusual thing is that when she gets
into these positions and her artery totally collapses.... her blood
pressure crashes and her heart rythym goes into loooooooong pauses.
She has an ER documented pause of about 8 seconds on the EKG. Plus
many other pauses of lesser time. Has anyone else had this? Thank
you. Myra

Hello again,
This is Lisa K.
It is good to read all the new responses , because they are helpful.
Well i hope I don't have TOS. As i said in my last email an MRI showed three
large distinctive tears and Tenonaphy of a severe nature . so like many on
this site i was tossed back to my orthopedic surgeon. Monday nov 24th is
surgery
the date. He said it will be arthoscopey with 3 small incisions.
The Tos Dr. said to stop the coumadin and PT( thought i might be having
spasms causing venous TOS) and after this surgery do specific therapy for the
rotary cuff and if i am better than i don;t have TOS. Kinda like well if the
pain stops thats what was wrong.
After reading about another person on this site having shoulder surgery
I started wondering if anyone else had an mri that showed tendon tears/rotary
cuff damage? thanks i am mostly scared about the genral anesathia.
God Bless, Lisa K.
How are you doing Haley?

Hi all,
Just wanted to let you all know that I got a letter from the hospital this
morning and my op is booked for 15th December so it's not too much longer to
wait. I have to go to hospital on 2nd December for an assessment that includes:
an ecg, xray, weight, blood tests etc in preparation for the op. I am really
nervous about the op but am feeling happier that I now know when it is all going
to happen.
It's unfortunate that it is right before Christmas as it is the worst time for
my boyfriend and my mum to get time off work if I need any looking after when I
come out of hospital but I'm sure we'll work something out.
Anyway, if anyone has any advice or info that would be useful for me to know
please email me.
Thanks in advance,
Hayley

Anyone wanting to do some more reading on TOS can access UCLA Medical
Center's website.
www.surgery.medsch.ucla.edu
then go to "Clinical Services", then "Listing of All Services", then
scroll down to TOS.
Denise

heysab:
You need to see a specialist in TOS. Like my earlier post, some doctors don't
even know about TOS. Where do you live?
DENISE

Hello, I have been having severe headaches for 3 years. I have been
treating myself with aspirins and celebrex for aches and pains. I
have continued to work but the migraines have become more frequent
and worse. I saw a neurologist and she took me off all my aspirins
and celebrex and boy , did I have a headache. She put me on
Topamax. This was in June. I have worked 3 hours since then. I am
a nurse and this has been a very sick 6 months. I also have a leg
that is an inch shorter on the rt. side in which I have never worn a
shoe lift. After 3 months of not being able to go back to work and
not being able to even drive a car, in so much pain, I moved on to
another Dr. a headache clinic. She sent me to a pain clinic where
she did trigger pt. injections in my neck and started me on physical
therapy on my neck on back. This is when I realized the pain in my
shoulder. This pain had always been there, but I had always taken
so many aspirins. The PT at first helped the headaches I thought,
but now my shoulder and down my left arm is killing me. My mother
has always said, you are doing just like I did 30 years ago with the
headaches and the shoulder pain. She had bilateral cervical ribs.
I have since found out that I do too, but I just can't seen to find
a Dr. that will think that that is what is causing my headaches and
my shoulder pain. It is like they want to rule everything else out
first. I also have 2 protuded discs in my neck. But I am tired of
the headaches everyday. They are worse when I get up. My arm {lt.}
has no pulse when I lift it up over my head and turn my head to the
opposite direction. My fingers do not tingle when I have them at my
side though. I can not leave them up very long because they get
weak and start hurting and burning. When I push above my left
clavicle it hurts through to my left shoulder where it always hurts
and my head hurts where it always hurts. It is just fustrating that
I still have headaches after going to drs. for6 months and still not
able to work. The more I am up the worse my headache is and the
more my shoulder hurts. It just seems to me that it would be the
constrictions from the tightness that is definetely there fo the
muscles and nerves under the clavicle from the cervical rib. Why
can't a dr. see that??? Can some one respond to me please if they
have any of these same symptoms or can help me Thank you,
heysab2000@...
m ennen thIonserghtnshen ds tcer wyghesntiuccc,k lku
thans wer

rbdisney:
Where do you live? I know of a vascular surgeon who specializes in thoracic
outlet syndrome.

I live in Nashville Tennessee, any help would be greatly
appreciated. I had never heard of thoriac outlet syndrome before and
have been trying to search everything I can on this.

Hi,
I am new to your group and am looking for help. I have had pain in
my left shoulder for almost 3 years now. I was first sent to and
Orthopediac Surgeon who said I had impengment syndrome and he wanted
to do surgery using arthroscopic to cleanout the bone spurs and the
fibrous tissue. My shoulder froze 3 months after that surgery so
they went back in with arthoscopic to clean out the scaring and
manully manipulate the shoulder. 7 months later I was still having
pain issues so they did a mylegram and decided it was the C5-C6 and
c6-C7 disc that was causing the pain so Nureosurgeon did ACD fusin
with plates on the c6 disc. I was pain free for about 6 weeks when
all the pain returned again. It has now been 9 months since the last
surgery and the Nureosurgeon sent me back to the Othopediac surgeon
saying it had to be the left shoulder and not the cervical disc still
causing my pain. The Othopediac took another MRI and said he could
not find any tears and other than minimal scaring everything appeared
to be okay. But he was now think that I had somethning called
Thoriac Outlet Syndrome and wanted me to see a Vascular surgeon.
Well I am about surgeried out at this point. I have a TENS usint
that helps some but mostly I can't sleet at night because the pain
keeps me awake. HELP.

Thanks Cathy for this site, anyways.........it has helped me soo much today.
Hard to believe the emails about this group I'm getting. I haven't' had surgery
yet but will make an appointment after my neurologist gets the OK from workers
comp. other wise it will be in Feb..03 when my MEDICARE kicks in. I am so happy
to get this info. from a computer. What the heck did people do without these
darn things.?
I am so grateful to read about POSITIVE ANYTHING regarding surgery..!!!!!It
really makes my day and actually relieves stress which has had a tremendous
effect on my body.
"How we deal with stress determines how our body deals"Well not always????
Extra info..I'm not a BUDDHIST, and Im not trying to get any one to follow this
but was reading about they're beliefs and I was shocked at how the Buddhists are
taught how to deal with "SUFFERING"<pain. I found it very hard to believe but
there are many Buddhists who believe that suffering can be avoidable if you
don't believe in it"..So your all going, "WHAT are you talking
about?"....exactly!!! Many messages in reply to the "SUFFERING" teaching were
from chronically ill patients like me. some were replies who believed in that
way of thinking, but like me alot of relpies were skeptical of course. I just
find it amazing. I just found that the chronic pain replies were of course"like
how on earth do you not believe suffering is in our heads?'".
Well you might look into this BUDDHISTS THEORY at a web site based on religion
of all faiths. Its a web site for Christians, Jews...you name it. I cant stop
suffering but i think the plain thought of using our minds more may actually
have a chemical response to pain in not Buddhists practices. Basically
meditation, which means sending your mind to a relaxed mode for a while and
trying to think about something more stress free helps me. I surely am not
telling anyone to try this, Cathy, but Cathy do you practice anything like what
I'm' talking about, like soothing music, breathing exercises???You know that
stuff Docs don't tell us because it hasn't been proven by AMA
please..Hope your feeling good Cathy. Bye now.

Hayley:
I have had both the right and left first ribs removed. I was wearing a sports
bra that zipped in the front prior to the surgery because I had so much pain in
the shoulders. Following the surgery I wore the bra for only a week or so, then
I started wearing regular bras. My incision is right above the bra line.
Wearing a bra didn't bother it. Like the other lady said, they put steri strips
on the incision. It has now been over a year since I had the left rib removed -
my scar is barely visible. I had the right rib removed in February - that scar
is almost healed also.
Don't stress about the surgery. It really isn't that bad. I was up and at 'em
in 2 weeks. My doctor did an angioplasty 1 month following the rib removal to
make sure the veins were open.
I hope I answered some questions for you.
DENISE

Hey Hayley,
I had a first rib resection done at the end of August. They also
went under my armpit. Also, I ended up getting a chest tube. They
told me before hand that that was a possibility, so I wasn't
surprised. I didn't wear a bra for about three weeks. I probably
could have done it sooner, but I wasn't in a hurry to put it on. I
wear a wire bra and need a normal one,(the wire on the side pokes my
bicep if I'm not careful) but they just don't support enough in my
opinion.(I'm a D-cup) At first I didn't wear the strap over my
shoulder as this tended to make my shoulder hurt with the weight on
it. So I just tucked it in on the side and no one knew any
different. I don't think not wearing a bra will make your healing
process longer because they do put steri-strips on your incision to
hold it together.
I feel better in the places that were bothering me before, but now
have new spots that hurt. First off, where my nerves aren't all the
way healed it feels like that annoying numbness. Where its numb, but
if anything hits it or rubs it, it aggitates the area. It's kinda
like when you have dental work done and your cheek is numb. It feels
really thick and numb and sensitive at the same time. When your
nerves first start healing it feels like little rubberbands popping
you. Don't know if that's normal. I am glad that I had the surgery
because of the fact that what I am going through now is just
temporary. Actually, I am going back in November to discuss my other
arm.
So, good luck and don't worry to much. I did that before my
surgery and ended up having to get on Lexapro, just to calm down.
Looking back there was no need for the anxiety.
Renay

did anyone hear about a new shot out that is gi=ven to decrease
swelling in the neck area...it just came out saw it on t.v.its called
enbrel?
thanks
harlygl

Well, I saw my consultant yesterday and have agreed to have the first rib
resection done. I had quite a long time with him and he explained everything to
me in detail so I feel pretty informed. I am still scared of things going wrong
but I am trying to focus on the difference it will make to my life if it goes
right.
I will be getting a date for the surgery in the mail but my consultant said it
should be within a month and definately before Christmas. So as he told me I'd
be out of action for around 4 weeks after the op I am now realising that I am
going to have to get myself organised now for Christmas!! I am so glad I can do
most of my shopping on the net cos there is no way I can go "real" shopping with
the TOS been as it is right now.
I wonder if anyone on here can answer me a couple of questions, they are things
that came into my head last night and probably aren't that important but if
someone knows the answers I would appreciate knowing.
After the op I assume I will not be able to wear a bra as they are going to
perform surgery through my arm pit. The thing is that I am top heavy and need a
bra to be comfortable, I also wonder that if I can't wear a bra, the weight of
my boobs are going to mean the cut will take longer to heal. Does anyone know
when you can wear a bra again? As I said I know in the grand scheme of things
this isn't important but I was just wondering about it.
Also how soon after the op did you know that it had worked/not worked? Are you
aware of it quite soon or does it take a while before you know? I did ask my
consultant this but he said he doesn't know as he doesn't see enough cases to
have a definative answer.
Thanks in advance for any replies, I appreciate it,
Hayley

Hayley I think this is a personal decision that you have to
make; maybe you have just not had enough time to decide
yet...belive me if your pain is unbearable and on both
sides...as mine was I would have it but it was not an option for
me. This is your life and you have the right to take your time
and be sure about it...maybe you could try a scalectomy first
and see if that helps... Dr. Atatsoy said last year he could do
that for me but it has been so long now I don't know if it would
make any diff.

=====
Cathy

If this M.D. knows anything about TOCs she knows that nothing
shows up; that is why I lost my work comp case. The only thing
that shows up is loss of pulse when your arm is held above your
head and loss of grip strenth in the hands; arms. All of this
was documented by Dr. Kleinert, but I still lost my case.
Nothing will show up on xray unless you have an extra rib you
were born with...PAIN DOES NOW SHOW...Is this M.D. an tocs
specialist? You need one.

=====
Cathy

I've had a gazillion blood tests, two emg's, three mri's, and xrays...nothing
shows up, but i have all the signs and symptoms you guys have.
My neuro seems not to want to give a tos diagnosis without 'seeing something' on
the tests. She hasn't seen my chest mri yet, but I'm going to say she probably
still won't see anything. I'm on two med's that don't do diddly for me...
so what do I do now? I'm very frustrated
Hugs
Lisa
"When you are a bear of very little brain, and you think of things, you
sometimes find that a thing which seemed very thingish inside you is quite
different when it gets out into the open and has other people looking at it!"
Winnie-the-Pooh

Hi again,
I have my appointment with the consultant on Thursday to discuss whether I am
going to have the surgery (1st rib resection) or not. I am still unable to make
up my mind about it though. I decide to go ahead and then I talk myself out of
it again. What should I do? Has anyone here had surgery and regretted it or
are you all happy that you gave it a go?
My arm swelled up really bad at the weekend, I couldn't feel my arm but my
shoulder was agony. Then my hand swelled so bad and started going blue. Maybe
this was a sign that I need to have the surgery.
I know only I can make this decision but I would appreciate any thoughts from
people who have been in this position.
Thanks in advance for any help,
Hayley

Hi,
How are you?
I was in a car accident (rearended too) a couple of years ago and do wonder if
that was a cause factor in my TOS, I have asked my consultant about it but he
says we will probably never know for sure what it was.
As for problems with sex, I know what you mean. My shoulder and arm hurt so bad
that is hard to get comfy at the best of times. My boyfriend and I are still
trying to find a way that is comfortable for me, but he is been great about it.
For now I lie on my back with a pillow under my bad shoulder and arm and he has
to try not to move me about too much in the process of it all! We usually end
up laughing about how difficult it is.
Hope you're as ok as you can be today,
Hayley

Hey thanks for the reply. I have really fair skin, so you can see
my veins. Actually, everytime I have to have a blood test, the nurse
makes a comment about how well she can see them.
About the sex, it was an issue especially after my surgery. But I
also have other hormone issues that effected sex before. My husband
is very understanding and loves to hold. But it took many years to
get him that way. (Ha-ha)
I have had problems with holding my arms over my head for many
years, but when I started working at a data-entry job, it got really
bad. I am actually having to quit my job because if I work more than
four hours, I am miserable for the rest of the day.
I am so glad I found this group. All my friends, including my
husband, don't know anything about TOS. They call me the eight
wonder of the world.
I do have another question. Does anyone have a problem with there
shoulder blade grinding when they move it. When I move my shoulder
up and down, it's feels like my sholder blade is rubbing on my spine
or something. It doesn't hurt, it just doesn't help anything.

Well as far as sex; using the hand or arm for very long was a
real pain; I think sometimes I would sit on the floor and he
would lay on the couch; this was when I first got TOCs, also
doggie stye was out because I could not lean on my arms/hands.
I think over time we just figured out what worked and since I am
single and have had various partners since then I would just
say; I cannot do that but
great sex helps ease the pain and takes your mind of TOCS. You
will figure it out...

=====
Cathy

Thanks for sharing your story and info Renay, i know i really
appreciate hearing details of experiences i may also go through
because other than a few sites i really can't find anyone else
(except Doc, PT and one nurse friend who even knows what TOS is)
How is your arm and shoulder pain since the surgery, Renay?Also
do you have veins that are showing on the affected side since you
mention blodd supply cutoff? Thanks again
Also i have two questions for other women on this site:
One is does anyon else smoke or has used nicotine replacement to
quit(my PT was wondering if related)?
Two, I am having a major problem that i've been denying and that
is that basically this TOS has ruined my sex drive for fear of
injury and pain, i love my Husband and know this is hard on him also,
How are others here dealing with that?. I finally just brought it up
and we now are at least aknowledging it is real and a problem, which
i think is good.
OH ,and i guess i'll sneek another question in,I was wondering
how many of us had this come to a point that couldn;t be ingnored
anymore after a car accident? I was rearended in July and another
time 2 years ago
Hi Haley , Cathy and all that are new, God bless and take care, I
havent been getting the bunch of emails in a digest form in awhile,
does a certain number of emails trigger one?

I was not a surgical candidate so I am sure some of our group
members may be able to assist you with this...I know zip about
this.

=====
Cathy

Hi Lisa, thanks for the update and for asking how we all are...
My tocs has not been bothering me too much lately but I know as
soon as I type this...tomorrow it will find me again...thanks.

=====
Cathy

Hello everyone,
Here's my story. It's kinda long. I was diagnosed with TOS in May
of thi year. My doctor reffered me to UTMB because I have no
insurance. the doctor there was a real pain. He would not accept
the diagnosis because it was from an internal medicine doctor. Said
it sounded more neurological, sent me to get EMG. It confirmed that
I had no nerve damage, but something was blocking my circulation when
arms raised. He also told me I had a good story and nneded to stick
with it. So, I paid out the bucks to go to a thoracic surgeon
closer to home. He confirmed what the first doc said, but still sent
me to have another EMG done. This time on both arms. This also
confirmed the first doc. With this the surgeon reffered me back to
UTMB. So, the UTMB doc says, well you have three docs that say yes
you absolutely have it, then there's me who says there's a 90%
chance. Only test left to do is removal of left 1st rib. So, I had
it removed in August. When I went back for my three week check up,
he said I was looking great (totally different attitude)and wanted me
to come back in November to talk about other arm.
My problem now is that my chest hurts alot around my sternum. He
did the under arm method. When I told him about it, he said that he
did have to do alot of digging around in there. My question is, how
long should this be hurting. I also now have a bump up by my collar
bone, top of sternum. The pain seems to originate from there and go
down my sternum, then it turns to the left, like it's following my
ribs by my heart.
Thanks for listening to my long story. Just looking fo ranswers.
Renay

HI all , Hi Haley, thanks for your post
Well during this 4-6wks of more waiting to see what happens i
have continued with PT, two days after the taping was done i had to
remove it(with the help of Hubby) cause it was causing alot of pain
that 3rd evening. BUT I want to let others know what my experience
was and is so far with this taping.
The first day an amazing thing happened the snap popping quit
happening evry time i used that shoulder( i think a tendon) and i had
the lowest pain level to date the second day about the same , but
after doing some PT exercise and layin down with the towel under
spine i staarted to have pain , i think i shifted the taping -or put
too much pressure on it with the sheet movemnt PT showed -When i wrap
a sheet around like a beaty pagent banner (goes under opposite arm
and gently push down at knot at bottom with unaffected arm while
mainting posture and bending neck over slighly to unaffected shoulder)
My best gorlfriend actully wanted to know what TOS is so i
emailed her this site and 1 more , she couldn't believe it and now
really understands pain associated , thanks to her for being
interested and thanks to Cathy for stsrting a site.
Today- retaped again , so far feel like day one of last taping ,
have an mri done (finally) this monday. I almost hope they find
something else and my Doc would say" oh now we can fix it"*grin* just
wishful thinking, i know if severe pain contuies up to christmas i
probably will say yes to surgery. HOW IS EVERYONE ELSE? God
Bless,lisa k

Hi Lisa,
I found your message re your visit to your specialist very interesting, thanks
for posting about it. It gives me something to think about before I see my
specialist next week (the 30th) and helps me work out what questions I need to
ask him.
Do you think you will have the surgery done? I am still unsure but deep down I
think I will always wonder if surgery could have cured me and therefore will
probably take the chance and have it done. I have talked it over with my
boyfriend and my mum and they both say they will support me and help look after
me after the surgery if I have it done, so it's good to know I will have people
around me.
Email me any time if you want to talk as it seems we're in the same boat right
now,
Hayley

HI all,
Thanks for your emails Haley and Cathy, i was bummin and nervous
about the TOS specialist visit, bottom line is i do not have complet
obstruction venous wise so i have options , still on blood thinner to
be on safe side, basically he told me that my symtoms have gone on
for so long that he doesn't believe PT will significatly improve my
situatioon,kina felt like he has seen so many patients try everything
out there and end up at the same point with some being the exceptions-
Surgery.
He only does the one on top accrose the neck/shoulder vs under the
arm. He also said that Surgery does not cure this but only
substantilly improves level of funtionioning , i would still probably
experience pain at times and be careful for flareups
But he also said that the patients that go for a very long time and
have significant symptoms and pain fair much worse after surgery than
if done earliear.
6 more weeks of PT , which i hope my insurance will still cover , and
getting mri done just to rule out other possiblities and today
started shoulder taping.then see dr. again to see if improvment or
surgery.God Bless and take care Lisa k.
MY PT specially trained in this said can bedone for up to three weeks
looks like a fan of 3inch wide strip pulling moderately back and
down, first pput adheasive down on skin then a backing material then
this medical tape leuk- something.
Felt mad and rebellious friday about all this and did heavy
housework anyway and flared it up
I think though i have to just accept this like finding out i had an
arthritis contion that is going to be with me for the long haul

I am horrible at saving mails. My neuro has run a gazillion tests and can't find
anything - which you all told me would happen. I'm now going for a chest mri. I
already had a bunch of blood work, and chest xray, mri of my brain and cervical
spine, and two emg's....
She now has me on neurontin and something else, both at bedtime, and nothing
works. Maybe I'll sugges to her that specialist if you can give me the list
again???
thank you
lisa

sorry to hear how much you're suffering. I hope that things get better soon.
What are some of your best tips on preparing for the surgery, or most
importantly, for preparing for AFTER the surgery?
I've heard to touch the area alot to speen up healing. And to not keep yourself
to medicated. anything else? thanks alot in advance!!
Laura

HI ALL,
wow, it seems like alot of us are at a similar point. thanks for sharing your
story and info.
I am scared . This Thursday I have my second visit with a TOS
specialist who is a vascular surgeon. Last visit he really recommened surgery .
I am
38 and this affect all aspects of functioning many due to pain and swelling
for me. I also am not suppose to raise my right arm because the venogram
althought 80 % normal suggest intermentent venous obstruction- thus the blodd
thinner
medication. My Dr. is very nice explains things in detail and is a trusted
specialist in this. My PT said this Dr. would not recomeend surgery if he
didn't think it was necessary.
I went to a neck and back Dr. who with imaging ruled out cervical
spurs spondlyosis, disc problems etc. He siad this is not at all coming from my
neck ,although soft tissue inflammation is there. He diagnosed TOS venous
related and a new finding that i have lost nerve sensation between my piny and
ring
finger on the affected side-thus neural compression TOS also is accuring.
tThey have never done a mri aor mra of my right shoulder /thoraic area
and that concerns me. Also i met a man in church who after a car accident
lost feeling in one arm was diagnosed with TOS, they mentioned surgical option,
but he said after 3 months of pt he is pain free (said massage type , which has
not helped me)
I keep going back to what caused this , a previous bedrest for a major
foot injury, not wearing the right bra , birth control pills , using that
hand for a nicotrol inhaler for 6months to try to quit smoking, using my arm in
akward positions for a medical cream i had to apply on my back for a year and
counting, the two whiplash injuries heavy lifting . My dr. said only the last
two could contribute.
If someone told me to sleep and wear a posture bra 34/7 or a brace i
would if it would heal this. The conservative PT is helping somewhat but
basically i am watching and avoiding use of the arm shoulder . I might have to
decide whether to go for the Surgery, Cathy what made you not a surgical
candidat,
and are you pain free?I wonder if i should have all the tests and imaging
anyway before i agree to surgery. I am wondering if shoulder stabilty is
lessoned after a rib resection. Take care alll my 20 min timer is up, God Bless
all
Lisa k.

Hi Harlygl,
I just read your message with interest, I am considering surgery at the moment
and cannot decide what the best thing for me to do is. I am sorry to read how
much you are suffering since your surgery, it is my fear - that it will make
things even worse. Can I ask how long ago you had your op? Did the surgery fail
to make things better or did it cause things to become worse? I hope you don't
mind me asking, I just feel that the more I know from people who are going
through this, then the better position I'll be in to make my decision.
Thankyou,
Hayley

Hi everone sorry it has been a long time since I posted..it has been
a long road and still hurting...I have tos on both sides i have had
surgery totally on both sides......ecovery is still hurting looks
like Im never gonna be the same again......if anyone has any
questions Id be more than happy to help eveyone thru this ..Its not
easy,its long and need alot of patience....alot...and if your on
workers comp like me.........be very patient.......it is scary at
first but I must say I have been thru just about every kind of
medicine/treatment there is for tos....ask away...im here
now..........hope everyone is doing ok,or should i sayas good as can
bee....
take care,
harlygl

Hi yall,
I need some advice from any one who has had rib-resection surgery, or
knows of what the experience may be like. Anything I need to ask for
before I get under the "KNIFE" ?. I will be going to the Edgelow
Protocol to get me into TOS specialized surgery. I will have three
months to prepare for the surgery that has been authorized by workers
comp.After waiting two years Im ready..I guess. Cathy or anyone can
you help me or anyone, with getting info on what to expect. I want
real answers, real stories, the hard truth and the good and the bad.
Thanks, Cathyanne, RM

Actually it has been the same to me too, when I am under stress, I can not
control some sudden movements of my hand, it becomes numb, & sometimes I am
utterly unable in controling my fingers.
I would be happy to hear about this too as it really makes trouble for me
through my educational examinations. As the examination ending approaches, this
symptoms get so damn worse that make me unable to keep the pen in my hand &
write another word :(
Marjan
Lisa <edmmachine@...
I've noticed my arms act up REALLY bad when I'm under stress (which makes the
stress even worse, which makes the pain worse, yadda yadda yadda).
Is this common with TOS? If so, how in the world can PT help that? I havent been
officially diagnosed, but this is the diagnosis everything is leaning towards.
Is this possible?
Thank you
Lisa M

Hi
I also just joined this group. I have had TOS since I was a child. It has gotten
worse in the last two years, and after much PT I will be having the surgery at
the end of the month. My surgeon at the Mayo Clinic also has TOS, so he's
been great about this whole thing. Sounds like you have a good Doc if he
wants you to think it over fiirst. That means he isn't the "slice and dice" kind
of
doc.
I'm terrified at the thought of the surgery, So I'm really glad there is someone
else here in a similar situation that I can talk too. Email me anytime,
Laura

I had my surgery in July. I had the first rib resection on my left side
Thoracic Approach (incision was just above my collar bone). I didnt have a lot
of pain before the surgery, but I had lots of swelling and headaches on my left
side. The surgery lasted a little over two hours. I had no pain after surgery
at all. My dr. did keep me in the hospital for 4 days (I hear most stay
overnight - but my dr is very cautious). They had me on some heavy narcotics
which made me incredibly ill. Two days later I had no narcotics and no pain.
In fact I have not had any pain whatsoever since the surgery and no headaches.
My arm still swells, but he said that it will probably continue to do that for a
while since I have had this problem since I was a child and the vein was so
enlarged. My neck was very stiff for the first couple of weeks, I believe it
was where they reattached the muscle. I was back at work in 15 days. I could
have went back sooner, but my dr. was on vacation and was not here to release
me.
Now I have talked to the nurses who were in on my surgery and they said that it
is a brutal procedure, that there is a lot of pulling and tugging and were
amazed that I was not sore at all.
If you have any questions feel free to email me at sragland@....
=)
Shawna

Hi all,
I just joined this group this week after finally being confirmed as having
Thoracic Outlet Syndrome. My consultant has suspected it was this for a while
and now the tests have shown that I have a narrowing in a vein and my nerve
tests showed some abnormalities. My symptoms are swelling and a blue tinge to
my hand and arm, pain in my whole arm and neck, lack of grip in my hand,
alternating lack of feeling in hand then constant pins and needles, and terrible
fatigue in my arm. Last year I lost the use of my hand for three months, I just
couldn't feel or use it.
My consultant feels I can probably be helped through surgery, a first rib
resection as he thinks that will give my vein more space and relieve the
compression on my nerves. I have been given til the end of the month to decide
as I was so shocked when he told me that I couldn't give him a decision there
and then. He outlined all the risk factors which really worried me, I would
hate to have this op and then find I am worse than now.
So I am wondering if anyone on here is or has been in a similar position and can
offer me advice or maybe tell me what it is like after surgery. I would really
appreciate any help.
Thanks in advance,
Hayley

I've noticed my arms act up REALLY bad when I'm under stress (which makes the
stress even worse, which makes the pain worse, yadda yadda yadda).
Is this common with TOS? If so, how in the world can PT help that? I havent been
officially diagnosed, but this is the diagnosis everything is leaning towards.
Is this possible?
Thank you
Lisa M

Thanks Cathy,
this website and people like you, sure help lessen that isolation feeling ,
somtimes just not knowing where all this(TOS) is taking you is a problem for
me. It is like you went to an amusement park and instead of frontierland or
another familar area you entered confusion and no answers land ( yet) :),
thanks
for sharing your squirel story , life is life, the very good- and yes even the
stuff that doesn;t make any sense.
I start PT again friday with myofascia movent ,or something like that
and absolutly no deep massage or innapropiate exerxise movement ( past PT i feel
just agrravated ) i also lay on my back 10 min in morning and 10 min in
evening with a semi hard foam round device under the center of my spine where my
shoulders drop completly back and relax , after i get up i do feel that is
helpful. Also they are concentrating on posture changes (MY right SHOULDER
DROOPS
DOWN AND WAY FORWRD , my hip is turned improperly and i had no idea about a
neutral neck position) also will be learning to reach or lift mainting upper
torso posture, and walk mainting that in a mock kitchen at PT .
I am feeling somewhat better :) Prayer does help.
My Dad shared something with me for the first time he showed me his blue
veins and said his neck shoulder/ arm has always bothered him but he thought it
was just from an old high school sport injury , but maybe it could explain my
anatomy might have been suseptable to this .
What pushed my shoulder(TOS) to chronic i feel was a nasty whiplash injury
in july with a cervical neck strain that resulted. God bless all, and again
take real good care of yourself , Lisa K

Hi again, This is Lisa K, the one with the blue veins popping out ,
went to my dr. at barnes jewish and showed them the veins and pain etc. . He
relly feared a blood cloot or occlusion in the scalene area was to blame .
I was admitted immediately, within an hour sent for a venagram . then was
put on a heparin drip and on 3rd day of hospitlization given coumadin , then
discharged late mon night and told if my insurance would cover it i could go
home
instead of staying on the heparin drip by taking shots i am to give myself
twice a day in the stomach called lovenx. This all came a a shocker and i fell
very depressed and confused about what is going on with my body. In the
hospital my blood did'nt respond as quickly as most to the iv heparin- i still
have
TOS but the venogram ruled out thoraic venous tos as when my arm was raised
during the venogram it did not show any compression of that vein.
what the venogram report did state was my veins were unsually small and
narrow on my upper arm and the axirally veins showed some abnormablity related
possibly to vein spasms, but no acctual occlusion . I'm 38, dont know why i
have this ,was healthy always before, now feel like i'm very old and on my last
leg with these treatments and the pain levels. Had a job offer today for a
keyboarding/customer service position i wanted- but how on earth can i do that.
i want some hope back and less confusion, take care all , and if anyone has
had any info or similar experience , thanks a million for a response, I thank
God for this website, wishing the best for all here. Lisa K

Hi Lisa, I think in TOCS cases each is similar in some ways but
also unique. Mine went backwards, so they said. I never had
any tingling or numbness other than just for about 1/2 hour at
the end of a work day...then it was PAIN IN THE HAND, which
progressively got worse and went into the arms and shoulder ,
neck, back of the head, etc, and then went to the right side. I
can get myself into a flare up very easily if I do thing that I
should not do...like try to carry in several grocery bags at
once rather than make multiple trips to the car, etc. Some days
are worse than others but to be honest it is rather hard to
predict. I finally a book bag on wheels that I can pull after
several years of trying to carry the book bag to class which had
my pain escalating before I even go to the classroom. I do know
that you are not supposed to carry anything heavy and if you
carry anything hold it up against your chest so it does not pull
the nerves in your arms downward; put someting under your dish
pan to elevate it so you don't have to lean over when you do
dishes, maintain good posture. If you get the correct PT
treatment or top rib removal it will reduce the pain. If you
don't get the correct treatment...I was in unbearable pain 24
hours a day and I researched and researched for an answer and
prayed like mad. I was told not to vacuum but my step father, a
surgeon, told me to do it anyway, it felt like I was pushing a
cement truck but now with a light weight dirt devil I can manage
one room at a time. YOu have to break things down into small
jobs; that is what I do. Basically its about learning to live a
different life style. As far as any sports or physical stuff
other than limited gardening...I eliminated that long ago.
I love to crochet so I found a way to do it. I might only do a
few stitches at a time but I still get to enjoy my hobbie which
I had given up. Cross stitch is out forever; cannot do it. If
you go to a good PT that works they tell you things that will
help you if you go to one that is useless what they do and tell
you is crap. I would not worry so much. TOCS is a one day at
a time deal and sometimes its more like 10 minutes at at time.
Being positive and determined mentally is the key to living with
it.

=====
Cathy

I have never seen that before but it looks like it might have
some sites that are very informative. The only one that I use is
the Harvard Graphics brain talk that is listed there under
thoracic outlet. It might be helpful for some of you have not
gone through the work comp battle yet... been there and done
that one. Thanks for sharing cathlete

Welcome to the group Jorjieb, glad you found us. The only thing
I can offer for you is ... if you have tocs on both sides and it
is very bad...the normal procedure is top rib removal. As far
as having to live with; I do agree with that one...The only PT
that worked for me was by a PT trained under the American
Association
of Medical Orthopedics. AAOM... they do have a web site. It
consists of PT that I do several times a day with a variety of
exercises that has helped reduce the pain. I am glad you able
to work 1/2 time that is better than some of us...I was a
medical transcriber who got TOCS from repetitive computer typing
and hence lost the career and life that I had....each of us has
our own stories. I do know that there are some others here who
have TOCS as a result of auto accidents. It sounds as though
yours is only on one side. I feel sure some of the members will
respond to you and give you their knowledge. I would suggest,
since you are nurse, that you find out all you can about this,
and the internet has some great info on it. Welcome to the
group

=====
Cathy

Hi all!!! I am new to this group and stumbled in while looking for
info on TOS. I was in a car accident in July and although I have
been a nurse for 16 years, I never heard of TOS until I was
diagnosed with it. I just finished a 8 week course of PT and massage
therapy with no relief. The best way I can describe what I feel is
to say my left shoulder and forearm feel as if it is sunburned. From
under my arm to my hand it feels like a tourniquet has been applied.
I get numbness and tingling on the inner part of my arm and
especially the palm of my hand and last 2 fingers. Any kind of
repetitive motion makes my arms ache. My doctor told me I basically
have to learn to live with it. I had to reduce my hours at work to
part time and feel I may never get back to full time. Thanks for
letting me vent. Has anyone found any little secrets to get some
relief and try to be semi-normal again?? Thanks!!!

anyone here participate in Sorehand?
http://www.ucsf.edu/sorehand/

WISE ADVICE
As a repetitive stress injury patient for three years from California and a TOS
patient I have learned alot due to my insatiable appetite for knowledge of my
injury, which is permanent.. which leads to why I'm so messed up...on workers
comp., mean-while getting the best advice from the very best I must say the most
important ways to handle pain with TOS especially, is hard work. I believe that
70% of your daily routine can almost totally rehabilitate TOS patients. I am
struggling with the practices though. Doctors can help. You must dedicate your
self to healing yourself first. Healing has alot to do with anger management and
dedication in my case. If you are tense and uptight all hope for non-invasive
therapy is useless.
1. PROPER POSTURE (this should be explained in Physical therapy or a Body
mechanics Class) especially designed for those with tos.Practicing good posture
should be the most important but practice makes perfect.Tuck chin.
2. BREATHING- You can release pain by when breathing, you bring rib cage up
which relaxes tension in ab area and chest. I practice proper breathing all day.
Pain causes us to forget about relaxation with our breathing.
3.EXERCISE-What gets oxygen to the blood more than aerobic walking. I bought a
stair climber. I get on it every hour for 30 seconds after doing a A
of 20-30 min.s each day. Be sure to stretch gently, correctly before peddling or
walking.
4. VITAMIN C- The neurological Society has adapted the 5000 MG. a day for
Vascular therapy and cell restructure in vein's and damaged or injured blood
vessels. I get my vitamin C in pure powder form and since its tasteless I put in
in my water when i take my meds.
5.STOMACH PROTECTION FROM MEDICATION- As a patient on lots of pain-medication,
my neurologists agreed the stomach needs protection as well as proper nutrients
for the liver to flush out medication and free-radicals that cause liver and
stomach damage. I turned for a more Holistic approach and drink GINGER TEA which
releases free-radicals and acts as a anti-oxidizer. This also helps digestion,
acid reflux and gastrointestinal disorders. The tea is very sweet and helps
promote good sleep as well. GINGER is great for neurological diseases. Be sure
it's all naturally processed, NO pesticides in it and naturally grown. Check
local Health Food Stores. Don't drink the tea just before you take meds. Wait
one hour.
5. RELAXATION CONTROL- what helps, ice, cold showers, aromatherapy, music,
massage???
6. PAIN MANAGEMENT- Medication misuse and overuse is related to failure to self
motivation.....think again before you take those meds. Are you doing anything to
help???
I AM A patient of the best Physical Therapist and vascular Surgeon in the United
States, Dr. Louis Messina, UCSF/UCLA, Dr. Peter Edgelow which has won best
Physical therapist award for the last three years by the Physical Therapy Assoc.
and is the master at home healing, surgery prevention etc. Look on line for his
web page under his name. His office is in Hayward, CA. You'll have to climb
mount everest to get into the UCSF Practice so you can start by reading both
docs articles.
If any one needs any advice I know more than I should so give me a ring at my
email address. rdamram4757@.... All other mail is restricted and
monitored.
thoracicoutletsyndrome@... wrote:
To unsubscribe from this group, send an email to:

I haven't been "formally" dx'd yet with TOS. I go for xrays today (which I
learned from you all may not show anything). But I'm wondering about some things
and am hoping someone can answer them....
This particularly affects my arms. Usually after typing, driving, or doing
anything like wiping a counter, etc. Some days are worse than others. It seems I
get a stiff neck, and have been getting migraines more frequently also (though
they just started so may not be related). My question I guess is...do the arms
hurt ALL the time, or do you get a break here and there? Like, Monday I didn't
feel too bad, but today I'm aching like crazy, so I'm going today for the xrays
since they hurt.
Is tos progressive, where it gets worse, or does it basically stay the same?
Can it go away and come back? I had these symptoms first last decemeber, then it
went away and came back in may. Is that typical of tos or are they looking at
this wrong?
Thanks for any responses in advance. Oh...and there was a list once to look for
tos specialists. I know I saved it..but now can't find it. Would someone resend
it to me pretty please?
Thank you
Lisa

Gosh, I hadn't realized how bad my typing has gotten , on a timer mentally
due to pain when i use the computer, sorry about the typos in last msg. I have a
question what is AAOM in relation to PT? and i thought i read a term shoulder
taping ? thanks for any info , take care all :) Lisa K.

Hi all, This is Lisa k. again. My dr. does thoroughly believe in TOS and has
sent me to two specialists . The first one is a PT trained in technices of
Fascia shifting and trainging in strenthing my upper torso along with traction
like stuff. The second Dr. is going to rule out a blood clot and also does
specific mra mri imaging related to TOS at Washington University hospital. I
still am very concerned about the dark blue veins pooping out all over the
affected side. i tried wearing a sports bra and it seemed to make them worse.
Also i
was in a car accident 7/10 and was rearended hard with whipladh and a cervical
neck strain the pt is leading me to believe the trau