Could I ask a question about TOS?
 

Hi, Thank you for being here!
A year ago last November I took my mom to Hudson FL to the Bonatti spine institute. She was going paralyzed. We then found out it was ALS. I did a lot of heavy lifting. Suitcases, transferring Mom, pushing wheelchairs etc. It was very stressful. We pretty much confirmed Mom was terminal. I started getting numb fingers and hands bi-laterally. I became paranoid that I was getting ALS. (Mom passed away Sept 08). I went to the Dr. she sent me to the Neurologist (Feb 08). I took my husband (mistake) the did EMG's I was in great shape. ("ready for the Olympics!")
My husband said to Neuro, She is under a lot of stress with her mom's care and dieing.

Soooo... My dr. moved and I went back to an old Dr. I had.
I said remember how I use to complain about my two fingers on both hands going numb? now it is from the elbow down. I went to the Chiropractic and he said "one look at your posture and I think you have TOS" (what the heck was that?)

My Dr. said you has EGM's they are normal so its not TOS. He read my report and said it is stress. Put me on amytriphelyn to try. Sent me for an x-ray report said I had lots of space between my ribs.

So here I sit wonder what the heck to do. I miss my mom she was a RN and always had good advice.

If you not completely tired of my story yet, Thanks for listening. I am going to add a few things.

Years ago I would complain that my neck muscles would feel swollen, I would get nasty headaches ant the base of my neck and a pin in my shoulder blade like a knife stuck in it. (Yes I thought it was heart) I was then sent to same neuro who said, could be fibromyalgia. end of that i was labeled.

8 years ago I had (3) 8 pound triplet girls, two years later a boy. So carrying lots of stuff is a fact of life from babies to groceries to every thing. Anything over my head ie.windows kills me.

I am working with my dentist for TMJ he says my jaw can spasms my bracials and cause numbness and tingling. My hands drive me nuts at bedtime, they are swollen when I wake up. I don't buy the stress stuff. I had a fabulous Christmas and had a great time and did not let the fact my hands are getting worse bother me.

I am asking your opinion on your thoughts. Could it be TOS? If so what should I ask my Dr. to do? What should I do?

Thank you so much for your time.

Hi,
Lets see where to start...

EMG s can be negative but you can still have TOS - it is not a definitive test. just means your nerves aren't damaged yet..
plus it tests the major nerves and not the sensory nerves??{i think that is one reason so many have neg EMGs but still have TOS}

Have you had any cervical spine MRI or xrays ??
- to check for extra c ribs or c spine problems?
that is the next step

start working to correct that posture now:)
did chiro have any thoughts for that?
mine does PT therapies for me as well as adjustments
low level laser, IF stim { type of elect muscle stimulation}, ultra sound, trigger point massage etc

check our useful stickys too...:)

we can help you figure it out:)

Hey guys,

I posted a respone in new members which I will also copy here.

Hey Northern girl,

I am so sorry fo the loss of you mom and the added stress and frustration of trying to figure out what is going on.

I have a couple of thoughts for you.

First I have TOS and TMJ and a c5/6. Essentially I am a mess at the neck and shoulders .

One of the first things is the TMJ. MIne was very bad. I would wake up with headaches and pain in my ears and even off balance from all the clenchin I was doing. I went to my ENT and he immediately thought of TMJ and sen me to my dentist who made a custom bottom night guard for me. It has given me significant relief and it was realtively easy fix. NOw when I say fix, the tmj is not fixed but much better managed.

Ok onto the TOS. I know you said the whole arm goes numb up to the elbow but did iut star more with the little finger or the thumb and first finger.

I ask because while I have TOS, I also have this thing called a c 5/6 subluxation or a retrolithesis and sometimes its the TOS that bothers me and sometimes the cervical issue. I know its the cervical issue when the thumb and first finger go numb on me and the TOS when its the litle fingers and the others.

Try to find an ortho or a psine doc that can take a look for you. SOMetimes it takes an EMG, an MRI and x-rays to help determine things. Ask for flexion and extension x-rays so they can see how your cervical spine is moving and if its putting any presusre on the nerves.

And you doc needs to do some reading on TOS...you have plenty of space between the ribs. pppppssssshhhaaaww....how bout between the clavicle and the ist rib. DId he even do some of the tests for TOS where they lift your arms in the air and check your pulse to see if it goes away?

Also ask him for a PT prescription with someone knoweldegable about TOS and cervical issues. Sometimes it helps sometimes not.

It sure sounds like whatever it is that from all the lifting ect (which is how mine happened) that there is pressure or pulling on your cervical nerves or your bracial plexus.

In the meantime here is the link to the TOS forum.

http://neurotalk.psychcentral.com/forum24.html

Keep us posted.

I feel your pain... oh how familiar when I read what's going on with you and Jo.

Jo has good advice.

Have you had a doppler test, where they do a test on your pulse at the wrist, bleep-bleep, first with your arm down in a sitting position. then they raised my arm up and the bleep went away. it's an audible, bleep-bleep. Painless. A cardiothoracic surgeon's nurse done the test on me and then the doctor did the test in the presence of the nurse. This cardiothoracic surgeon also said, "You have bilateral TOS. I'll cut you but I won't testify for you." That was about 5 or 6 months after the accident.

There's lots of tests and things that can help you. You just have to be a good pilot. Be careful in your quest for help.

I was so pain wrecked (back and neck too) I was right over his head. He couldn't see beyond bilateral surgery $$$$$$$$ for him.

He wasn't including my scalenes. so he would have done more damage if I had agreed to surgery by him. Find a good doctor... they're out there too.

The medical journey with TOS and other injuries has been cold, heartless at times, and costly... all at my expense.

The more you learn the more able you are to discern. Get an anatomy book, online atlas of the body, library. try to understand your body's structure in relation to your pain. You're unique. It also helps you to describe it to your providers. :)

Thank you for the information and support. I live in Canada and have medical. The doctors will do stuff for you if you ask and give a sound reason for the request. ( They don't like being sued for not doing stuff) I live in a small community and it's 3-6 months to see a neuro and 1 1/2 hour drive. I live next to the local doctors office. He is a good GP but ...
I had b12 test, my chiro said it would not hurt to follow up with a rheumatologist for fibro. I has a blood test that did not show up (? antibodies?) to support that. He looked at my neck x-rays and said my x-rays look good. No one has done the pulse test with arms up or out.
What makes them tingle so bad a night? Is it lack of blood circulation to the nerves or is it just the nerves? I am going to make an appointment this week to see the GP. I have been putting it off because I feel if you don't know what wrong with you or what you want them to do they pat you on the shoulder and say come back in 6 months. Actually the nuero said if I am still concerned come back in 2 years.
The GP said he could send for a MRI or ct scan if I want to pay for it because only a neuro can order one. But will it show TOS?

Thank you in advance for your opinion, and support.
Cheers Laurie

:)

I can take my own pulse the old fashioned way, or have a friend. Locate the pulse at your wrist and feel it for a while, count beats by the clock if you want, then holding the pulse raise your arm up above shoulder level or as high as need be. if your pulse fads or immediately disappears, well...

(if you have trouble raising your arm(s), get someone to assist you or I would use the wall the push my elbow/arm/shoulder one way or another, for one reason or another.) :wink:

I've had my pulse tested several ways (treater preference-their own way), but it was always tested some way, with TOS in the picture, with each provider that has examined or PT'd me. been interesting to say the least. not even a standarized way to manually test a pulse on your wrist for TOS. It's as challenging to treat and diagnose as it is to live with, and keep your sanity about you. again, I say be careful. :eek:

Be wise in your choice if you're limited like Canada may be. Even here I've come to the fact that I'm a consumer of the medical industry. I've learned to be wise about where to put my medical $$$$. It's expensive to treat. if some gadget don't help you, return it for a refund. some things help. I've got hundreds of $$$$ for things I've bought to try and get relief at my disposal now.

Seems like I pleatu with most things and can come back later and get relief again. don't know if anyone else has found that to be the case.

You're at the right place for help. Keep asking. :hug:

Thanks for the great advice. A year ago I was living with dread, and fear when this first happened. ( I though I was getting ALS) Now I know it is not going to be fatal, it's a pain in rump as well. But I am going to get it figured out. I feel I opened the right door finding this forum.

Hey Laurie,

Welcome I am Victoria from Alberta previously Ontario for most of my life.
I can't understand why you would have to pay for an MRI or CT ever ever ever unless you go to a private clinic in BC. I would check that one out for sure...call your local health network or however your province works with healthcare...not sure sorrry.....I am an RN and loved my job until a lift made me have TOS and a huge messy battle with Workers Comp which I just won!

Having said tht I do want to send my condolences on the loss of your mother it must be very difficult especially with so much going on in your life as well. hugs.....

I think you may want to try to find a physiatrist...if you want to find doctors and then tell your gp who you want to go and see it makes his/her life easier and if you take medical articles and infromation on TOS and how to treat it and what can help with the pain in the mean time...unless you are still breastfeeding then you need to watch everything that goes into you as you must welll know by now.

https://www.cpsbc.ca/node/264

that is a link to the college of surgeons of BC you can go there and look for doctor by specialty and then pick the closest one to you and look them up on the net find out if they have any articles....what they have done..

If you are looking for a BC specialist in TOS I believe DR. FRY is in the contact list.....but by the sounds of it you are north BC and not close to the surgical centers where DR Fry is....I believe Vancouver but could be wrong. He does tos surgery and is aware of TOS.....your doc could call him to get advice???

Another test to consider is a doppler ultrasound of the arms where they put you into provocative positions.....arms at ear level and hands above elbows...so 90deg angle ie: put your hands up move but not all the way just to elbows up and shoulder to elblow at ear level. (am I making any sense here???) Sometimes I ramble a bit.....sorry

That test will check your blood flow into your arms in the prov. positions and that could tell if you have any blood flow issues that may cause swelling and then push on nerves to cause numbness and tingling...Vascular tos.....there are a few kinds of TOS but I won't bore you I'm sure you've looked online to find info.

Any doc who tells you that you are fine cause your emg is negative has NO CLUE about tos....my emg's were all fine but I had a 90% occlusion of blood vessels when my arms were above my head....I have vascular and neurogenic tos.....they did surgery for the vasc and now I deal with the chronic pain of the tos.... a good PT who does passive movement with you may help as well as accupuncture or deep accupuncture ims to help you get through the pain until you can see the right doctors. Can you appeal to the bc health board saying it will take you 1.5 years to get to the neurologist and that is an unacceptable wait time and you want to be seen in a more rapid time and it is up to them to provide the service for you. You need to be seen soon to determine if there is damage to your nerves and then what your options are with the pain and management of your TOS....which to me you have all the classic signs of.

All it took for me to get injured was one lift of a patient the wrong way. This could have happened while lifting your Mom or your kids.....it is not an easy thing to determine.

please feel free to email me or to PM me if you want more help.
I'd be happy to go over things with you. you need to be seen by a neuro asap. or at the very least a vascular guy who will rule out vascular tos for you then go on to management of neuro tos.

take care and try not to worry TOO much....it really does not help.
oh by the way the amitriptyline you were given for stress is a good medication to help with nerve pain and nerve irritation. There are lots of meds to help but you NEED a diagnosis for sure not that tos is ever for sure it is a diagnosis of exclusion and you can get fibroymalaia from tos as it is an attact of your nervous system and the body can overeact to cause fibromyalgia (it did for me anyhow....6 years in pain.....= fibromyalgia)

headaches can be managed by botox injections into trigger points and your head but you want somebody at a major hospital to give it to you for the sake of poor injection........
okay enough for now...

please take care and hope you get the answers you need

love and hugs,
Victoria:hug:
gibbrn@hotmail.com

hi, was almost gripped when i was reading your story - so very sorry to hear about your mum. stress can make this condition much worse - lots of stretching and relaxing in hot baths etc are a life saver for me - however i dont have triplets so much easier for me than you i would think!

Reading your symptoms, sounds very like tos....lots of people on here - incl me - have been given the run around and passed from doc to doc each not knowing what the hell to do or not really caring what to do!

So ideally get yourself off to Dr Fry as victoria has suggested - its more ideal to see someone who understands fully the ins and outs of TOS - as i have been in tears in the office of dr's who give me the brush off, so desperate to be believed and taken seriously - DONT ever doubt yourself - its your body and you know its in pain!

take care
x

Wow, Thanks Ladies!
My GP said he could not order a MRI or a CT scan I would have to get a neurologist to order it or if I wanted to pay for it I could have one in a week. I would gladly do if it would give me a clear diagnosis, but if the GP can't be bothered to send me to some who could answer my questions. Is crampy, sore forearms something you see with TOS? I still have strength in my hands (like opening jars) but I don't have the stamina with them, like giving a long massage is harder now.

"crampy sore forearms" with striking pains on the underside... ouch.... for years I suffered with that. I have found keeping my upper body warm -- but not with heating pads - too much heat promotes swelling, especially on a microscopic basis -- helps with the arm pain. Thursday replied to "arms socks" from PT to real arms warmers/socks at looks of accessory shops. Guess what I got for X-mas? "Snuggies." (Blankets with arms sewn in) My husband got me 4 for Xmas. I just have them at all different places so I don't have to drag my nest around anymore.

My EMG/NCVs X3 sets and a shoulder MRI did not confirm my diagnosis of TOS. It did show other things, but not definitive for TOS. A good doctor will order what tests you will need.
Later :hug:

My TOS started out as RSI injuries and then spread into my neck , upper back and shoulders. {lots of repetitive assembly work, long hrs and fast paced - plus type A work ethic}

I had sharp cramps in the back of my hands at one point, then it was elbow pain, and then tight buzzing forearms, then the tingling and buzzing ring & little finger for a short time {I got my next batch of PT at that time}, then into the burning in the upper back and chronic tight and then finally spasmed neck & upper back muscles.

The forearm symptoms lasted the longest for me, but when I finally got advanced PT and chiro working on the neck muscles and upper back much of the forearm sx went away.

a rough time line for me -
RSI injury 1999 - recovery took about 1 yr
shoulder "strain" in 11/2002 - PT and light duty
shoulder & neck "strain" in 1/2003 - PT and lt duty again
All the previous injuries started gradually reappearing quite soon after I was released back to full duty work in 4/2003 and then lt duty til 10/2003
2004 off work and found a really advanced PT and chiro who knew enough to really be of help to me.
2005 was really when things improved a lot for me with arm use & stamina.

The best things that helped me -
Sharon Butlers stretches
top rib mobilization
self trigger point work with tennis ball, golf ball, finger what ever fit the best to put the pressure on the knots.
chiro visits - he does PT therapies too
far infrared heating pad
home electronic muscle stim { IF stim if you can get one}
posture work - laying over one of those large exercise balls or a foam cylinder {videos in our sticky thread} basically to let the shoulders drop back and down and chest open up is a very good one.
a rolled towel will work too, or just the floor with arms out if that's all you can start at. then progress as you can.

My stuff was mostly muscular and probably the sticky fascia that Sharon Butler talks about. And head forward postures.:(

Discomfort can cause increased bad posture.
The theory is -
In trying to relieve the pain you hunch or slouch - but that is the totally wrong thing to do as it stretches the already over stretched upper back muscles and shortens the ones in front of the body.
So your body starts to see this as the new normal, but it's not a good thing.:(

:)

Point me to Sharon Butler's stretches. I'll do'em. stretches are good for TOSers. Need some new. bored with old. :D

I'm studying and researching and treating with infrared and LED lights. Didn't know that had heating pads. They also have Mingu (LED & infrared) massage beds that some massage therapists use. Google your area to see if there's any within your comfort zone of travel. :cool:

There should be some threads about her stuff too
http://www.selfcare4rsi.com/rsi-articles.html

she has a book {in libraries} or you can get her TOS program online- the program is more consolidated & focused for TOS , where the book you look up the stretches by symptom/location as it covers all RSIs.

hey, need to add to comment.

in re: "YOU HAVE BILATERAL TOS. I'LL CUT YOU BUT I WON'T TESTIFY FOR YOU." I didn't even ask this surgeon for causation. I was hurting so bad and his bedside manner was so cold, there was no way I'd lay down for his *** to cut on me. I bowed up right there. :D

oh, yea... and his typedwritten report was very vague but not too damaging... just vague... but there was a neatly handwritten note on that report that read something like, "the patient didn't obliterate in either direction." that was it. no signature, date...... liars... no doctor has neat cursive handwriting like that. He got someone to write that and mail it out as part of my medical record with records request came through... remember "I won't testify for you" well, I wasn't able then, and my attorney didn't pounce on it because he didn't think about it or he would've been challenging and impeaching "my own doctor" on that neat handwriting. I just wasn't able to deal with the legal side of it, although I work in the legal industy. outcome not too good but I was holding a lot of bad cards. preexisting, still working (self employed-couldn't do a regular job then if my life depended on it.) oh... and Dr. Powell ---- strike 2 for my doctors helping me out with anything. I didn't really ask them for legal/causation, but they didn't have to hurt me like that either... I am very disappointed over many things through this experience.

I do understand. :grouphug:

Do you fing hot baths make your hands and arms tingle worst. I hate washing my hair. Is this typical?

yes. washing my hair was very exhausting. I have just let the showerhead beat the creme rinse out. You must get a stand for your hairdryer.

I have dropped the curling iron out of my hand when I'd raise my hand up. I burnt my leg a couple of times and decided to quit using those.

I have let my hair grow longer so I could pull it back or up and maybe look okay without washing it.

and hot baths and showers, I couldn't have made it without those. heat does promote swelling of tissues on a microscopic basis, though. that could increase tingling. I have turned the hot water down a run cold water shower on my lower back especially, for 5 or 8 tolerable minutes. Use heavy robs to absorb water. couldn't towel dry for a long time either.

do you have any neck issues? ... causes tingling too. carpal tunnel? tennis elbow?

I have to keep my upper body snuggly warm or pain level WILL increase. otherwise it's very tolerable. amazing.

(I don't use a heating pad anymore burnt 3 out)

hey, hot (but not too hot!) baths warm up and loosen my muscles, making me feel . however try washing my hair in the bath and i dont have the neck strength to support my head leaning back and using arm to rinse out the shampoo....could almost drown myself that way!

My neck muscles became weak very quickly (perhaps due to the interference to my nerves) a physio did some test on me by lying me down and asking me to bring my chin down towards my chest - she said that my outer neck muscles pop up very quickly and are doing the work that my inner (core muscles) should be doing. My head often feels too heavy for my neck!

Like broken wings i also let the shower do most of the hard work in rinsing out the shampoo suds for me.

Well I see I need to be more careful with some of your advice!

Jo55 Was talking about these stretching exercises, and I thought to my self, hey the kids have one of those exercise balls in the basement. They got it a a garage sale and love tossing it around. I brought it up to the launder room to clean it with comet. It was still usable with the permanent marker snowman drawn on it. Of course the 3 Christmas kittens thought this was too much fun and had to join in on a game of chase the towel while I cleaned it. That only took me about half an hour, now I google some exercises and I watch this guy on you tube kneel on one and hold his balance, next he starts bouncing a ball, then finishes up with lifting weights. I am impressed. it looked so easy to do! (not) so I go to the ball and I decide it it's a little flat, I pull out the pin and blow it up manually, this was my first mistake, I blew my brain out I think, almost passing out, I get it as firm as I am willing to go, and not have a stroke!!. I then thought well "just put it between your knees and roll on it like this" well good luck! I had to hang on to the dresser to not fall off. I time my self I hung on two minutes, Mistake number 2. My legs are still wobbling and I hope i can walk tomorrow. But then!!!! I decide to tone it down and just have some light stretches. Mistake number 3. I lie on this thing on me back but my hair clip sticks in to my head, so I remove it. I am not noticing the ball is rolling backward over my long hair pinning me backwards on the ball unable to move with out riping my hair out!!! I havd gone to far to get back up! Well I started to laugh which is hard when you are stretched in this unusual way. I fell over sideways and excaped the "murder ball". I am still laughing. Thought I might share one of my new experiences with you!

I think that's enough exercise for this week northerngirl!

ROFL. :D :D :D

tooo funnnnnny!!!!!!:D:D:D

I hope you're okay.

:D:D:D.....

Oh no, I should have explained more about it so sorry:eek::grouphug:

Maybe you should start on the floor with arms out at a comfortable angle {for you} and progress from there first before you try the murder ball again.:D

Sharon Butler really likes to stress baby steps when doing her stretches { i think it should apply to all stretches/PT for us}
I know it's very easy to go overboard... but that will set you back in the healing process.

You story made me chuckle though, I just hope you don't have any bad after effects from it.

No I am great, I am feeling like being motivated and am still giggling. I feel a little stiff but it's a good thing. I must tackle the ball again! I will not let it win!
Cheers Laurie

I tried to get in to see my last Dr. (I liked her). Between me being gone for a week and her been gone, it looks like the end of next month. I guess I'll go back to my neigbor (ugh) and listen to him talk and not really listen. I hope this is TOS, I have that black hole feeling again today that it's ALS.

hi again
 

Hi,

okay NO more weight lifting! No overhead stuff...or falling off the ball onto head stuff!!!! What a time you had :eek:!!LOL

Any stretching I do, I do in the shower when my muscles are more loose...not sure how long you get to do your shower with your kids(not sure on age) .....however I find after 10mins I am ready to do simple stretching of my neck and shoulders as well as simple arm lifting as well as walk the hands up the wall exercise...not to the point of pain but to the point of feeling like I 'could' go further but really shouldn't.

As for washing my hair...past shoulder length I bend over and do it. I am not putting my arms overhead. I find this has been my saving grace.....and as for drying my long locks.....bend over with hairdryer and scrunch my curly hair...holding dry has become too much of late and I just purchased the dryer stand. yet to use it.... I have also purchased Conair's new straightening dryer with the tourmaline and comb on the dryer itself. I turn upside down again...and use it. it took only 15 mins to straighten my hair so it was a success as it usually takes 30mins to dry with brush and dryer straightening then straightening iron to finish.....oh I think sometimes super short would be easier...but wedding in a year not getting it cut.

I am a heat addict. I keep my house at 76 as it is too cold otherwise and I may have a sweater on at 76 still can be cold. I have an amazing heating pad (2 actually so I don't have to drag them around the house) by sunbeam. It's a pad you unhook from plug in device and you can throw in washer.....heating elements in the pad don't get damaged....mind you I have yet to wash mine...they usually die before I need to wash them.....make sure there is a timer on the one you get if you plan on getting on. it's much safer that way. below link of the pad.....

http://www.sunbeam.com/ProductDetail...-home&pid=1000

Exercise is great but is best decided by a PT if you have one close to you to help you decide what you can and can't do. It will really help you. You may also help with diagnosis with a PT as they sometimes notice what the actual problem is before the doctors clue in......

You are not crazy you are just in pain and frustrated!!!!!!!!!!! WE GET IT!!
IF there is any place I feel safe and understood and un-judged at all times it is HERE!!!!

Is there a specific reason to see the doc who dosn't listen??? Make sure u go in to see him with some info on TOS
http://www.mayoclinic.com/health/tho...ndrome/DS00800
http://www.umm.edu/ency/article/001434sym.htm
http://www.atosa.org/tos-research-and-resources-library
many sites but make sure credible info or doc may not listen...ie from a major university or hospital group.
Have goals in mind for the appointment and write things down so you don't forget the questions you may have for him or things you may want to ask.

As for testing....the MRI's I have have been to RULE OUT other pathology and not to diagnose tos. As well as a basic chest X-ray.....will be helpful as it can show if you have cervical ribs which are extra ribs you may have that could be complicating things for you.
An EMG usually only shows MAJOR nerve damage. So not to be trusted to diagnose TOS. Any doctor who knows of ToS will know all this. However in your situation.....you may have to be the one guiding the visit. I have done this since nobody would listen to me or take me seriously until I changed doctors......I was at an idiot doc who told me go get a massage you'll feel fine....but he didn't explain any of my symptoms as to why I had them etc....I'm sure you get what I'm saying.

If you are going for pain control...then things like tramacet or tramadol work well for pain in the beginning...before you need to graduate up....LOL...and things like muscle relaxants....baclofen 10mg twice a day or flexaril 5-10mg three times a day....ideally make sure you have something at bedtime....you could even try robaxacet if he won't give you anything...OTC drug. Also celebrex an anti inflammatory is good for pain 100mg once or twice daily with food.
as for the weakness the only thing is rest!!!! take breaks between tasks...not easy with kids 8 and 6. (not that I'd know I've none, but I can imagine!!) Heat is your friend...or most of us anyhow....NOT if you have RSD which is a totally different evil all together. Your symptoms do not sound like RSD to me.

anyhow make sure you go prepared to the non listening doctor and MAKE him listen...grade your pain on a 0-10 pain scale....0 being none 10 the worst you could ever imagine in the world and you are curled up in a ball dying.......this may help him to understand your issues. Doctors (esp. old school ones) like data so start a diary if you can and then let him know what brings on your symptoms....what makes you feel a certain way and make sure you keep good records. It will also help YOU to understand this evil called TOS.

I hope tht some of this has helped you and you get some results from this doctor you are going to see. Look forward to hearing how you get on at the doctors....hopefully you get the results you need.

I know the medications not only because I have been on them but because I used to give them to my patients as a nurse.

take care
love and hugs,
Victoria:hug:

Thank you Victoria,
I have decided to wait to see the doctor I like. I can say to her "I think it could be TOS" she would say if she did not know let me find some more info or let's send you to someone who would know.

One hour drive and 3-4 week wait will be easyer, than trying to debate with someone who knows everthing. Actually he's not that bad. I just feel so unprogresive when I go to him. I think I just want to go see a neuroligest. I would like to know how to get better, or at least say where I am. Thanks again Victoria.

laurie

Hello there!
 

Haven't been on this site for a little while, but found your post right away. I can understand your frustration and wanted to share a little about what I've learned so far (stress the "little" part). I hope I won't bore you to death - a guess a few months off has made me want to vent a little too!

Several months ago, my milder symptoms (numbness, tingling, and aching in my arms - especially the left) led me to online research of possible causes. I came upon a website that showed 3 different tests for TOS. I failed (positive) all three. Mentioned it to my doctor and he laughed a little, until I showed it to him (the white hand test really gets 'em interested). He had never heard of TOS (definitely NOT the first doctor I've talked to in that situation), but sent me to a vascular surgeon for a consult.

The vascular doc knew about it and how to test for it, but admitted he didn't have much experience treating it. He did his office tests (with the same positive results) and ordered an angiogram to test for blood flow with the arm(s) in different positions. Even his assisting staff at the procedure were blown away when I raised my arm over my head; they had never seen anything like that before - that's when I really knew how little was known about it by the medical community. 100% arterial and venous occlusion with arm abduction.

That was 2 months ago. I realize you're in Canada, but let me assure you that being in the US with an HMO may be close to just as frustrating. My case file has been sent to 5 different offices and hospitals with every one of them refusing to consult with me (due to lack of knowledge, I assume). At least they have the where-with-all to admit it. In the meanwhile, my original vascular surgeon told me that NOT having surgery was out of the question because my type of TOS is arterial and venous, thus not doing surgery could result in a blood clot and/or stroke (I'm only 38 with 5 kids - not an option for me, of course!).

He made it sound so urgent, yet even now, I'm waiting for an appointment next Wednesday with a vascular surgeon at UCI that, as far as I can tell by his online bio, doesn't do a whole lot with this condition either. So, I'm pretty sure that will lead to ANOTHER referral on to somebody else. Hopefully, eventually, I will get the referral I really need to Dr. Ballard or Dr. Ahn, specialists in this area in Southern California.

In the meanwhile, the veins in my arms are starting to look like my 3 year old painted lines on me with a purple marker. My arms ache constantly and are numb and "asleep" at lower and lower angles. I wake up with swollen and numb lower arms/hands and simple tasks are becoming difficult.

I'm a rookie, relatively-speaking, at this TOS thing. I've been diagnosed with arterial and venous TOS, but have yet to be referred to a doctor willing to help me. Still, I have 2 suggestions for you:

1. Visit the website: http://www.vascularweb.org/patients/..._Syndrome.html
It talks about the different types of TOS in the simplest terms I've found - great to show to your significant other and/or family, if necessary - heck, or even your doctor!

2. Call Dr. Richard (or Robert?) Sanders in Colorado. He has written a book about TOS and has done a few thousand surgeries (although recommends more conservative remedies first (that's a plus!)). He is willing to do a detailed telephone consultation with you and give you suggestions on what you should do next. I have his number around here somewhere, but I'm sure one of this site's great guru's has it too. If you can't locate it, let me know and I'll find it for you. He's a great resource and is actively researching the condition, so he really wants to know about your symptoms, and considering ways to treat it - hopefully avoiding surgery!

This may have already been mentioned in previous replies to your post here, so pardon me, but try this easy test: Stand in front of a mirror. Raise both of your hands over your head, forming a sort of triangle shape with your thumbs and 1st fingers. Rock your shoulders back slightly so that they are in line with your chest (the flat plane of your body), as if you were trying to squeeze sideways through a very narrow opening in a doorway, etc.

If you're like me, you don't even have to "pump" your hands a few times before you start to feel numbness, aching, tingling, and heaviness - not to mention, your more-affected hand is completely white (sometimes blue) in comparison to the other. If you were to have someone check for your pulse at this time, they'd be hard-pressed to find it - a sure indication that the blood supply to (and possibly from) your arm is blocked, it not completely occluded.

Show this to your doctor - it will certainly raise some eyebrows! Tell them you'd like an ultrasound and/or angiogram to be sure of the extent of blockage. If you have only (and I say that VERY lightly) neurogenic symptoms (numbness, pain, tingling, heaviness, weakness, etc.), you may be able to avoid the NASTY surgery and recovery by learning ways to deal with the pain (which may be much better than the debilitating surgery to release the pressure on the nerves). But, if your biggest problem is vascular, that is occlusion of the subclavian artery and/or vein, there are fewer choices for treatment. Gee, for some reason, we just can't live (well, our limbs can't, anyway) without that darn blood supply.

I hope you are able to find some answers soon - and me too for that matter. So many things in my life are in limbo waiting to find out what the next year or two have in store for me. I just try to take one day at a time and not let my thoughts about it consume me. But, honestly, every day is a struggle - and I don't even know what's going to happen yet!

Hopefully, you will find the same understanding and support on this forum as I have. It's a great feeling to know that there are people out there that know what you're talking about and what you're feeling. It's NOT all in your head, your symptoms are real. Stand up for yourself and be your own best patient's advocate. The only person who will look out for you is YOU! You go girl!

Keep us informed. I'm thinking about you!
Carrie

Carrie . excellent post,
I hope they will put ASAP on your file and get you to one of those expert docs soon!
Keep at them.:grouphug:

Wow, Thank you, thank you! I so look forward to coming here to this site and get all this information. I am getting my power back I am going to get some answers. Thanks for the support.

Cheers Laurie

I am off for a week holiday in Fl. I have decided no carry on, no laptop, I am going to take a few weeks off the computer until I see a doctor. No point worrying my self sick or obsessing over it. I will be back to let you know what's going on.
Thank you again Laurie
(PS. I can do the no computer, but it might be harder than leaving the kids behind!) :)