[TraceyW]

I have had a horrible, horrible day!!. I went to get the results of the MRA i had done 4 months ago (god bless the british medical system!) and as i thought there was nothing on the results to suggest vascular compression. I said to my Dr that i feel that i should have tests done with my arm being moved into my 'trigger' positions to see what shows when im in pain. Anyways, the conversation deepens about TOS (thanks to everyone on here iam 200%more knowledgeable then ever before so know what to ask!). It becomes apparent that the man has never treated TOS before and said that there is nothing surgical he can do for me and that i should ask to be referred to a vascular surgeon or go back to PT.

I have just wasted another 8-12 months on this Dr not realising that he doesnt have any specialism in TOS - he is a neuro surgeon who i was referred to by a pain consultant who said he belives i have TOS.

Through frustration i burst into tears in his office (how embarassing!) and couldnt compose myself to even talk......i then battled my way back through the streets of London feeling like everything to do with my pain is all in my head.

I asked him about the sensory nerves being the first thing affected in tos and thats why nothing shows up on nerve studies - he says that the EMG does look at sensory nerves.....so im confused about that now too!

So im back to square one AGAIN and have to somehow manage to find someone who does have a tos specialism.

[gibbrn]

Dear dear Tracey,

my heart goes out to you. I too have been in the same situation in the wonderful Canadian medical system.....wait wait wait for an idiot to say go live in pain.....etc.

I feel your pain and YOU feel your pain it is soooooooooooooooooo not in your head and dont go thinking that or u will end up insane I can assure you!!!
Deep breathing....heat pads galore and a good massage to get things loosened up! I do hope you are getting massage. It helps with lymph drainage and will help to decrease some of the horrible pain you are feeling.

DO NOT LOOSE HEART there are so many idiots who claim to know what they are doing but don't. Vascular surgeon!!!!! go that way and you need a veinogram of your arms and chest in PROVOCATIVE position....ie superman with your arms overhead on a table like you are flying only upside down.... on your back..... this will for sure tell you if you have vascular tos

as for neuro.......a neurologist who does not do surgery is best for diagnosis. He/she can read and or do an emg to see what if any nerve damage there is. Remember it does not always show up most of us tosers get a clean bill of health on an Emg......not total damage just enough to hurt like hell but not to show up on the test!!!

keep your chin up my dear we are here for you and rant away.....tears and all.....and by the way I'm sure if did a poll we have all cried in a doctors office or wanted to reach across grab his/her tie or neck and bash head on desk........tears aside!!!

take care...there is a route to help you will find it but it will take time

love and hugs,
Victoria

[TraceyW]

Thanks victoria,

the MRA (MRI with dye) which came back as normal was done with me lying on my back with arms by my side and then i went through again with my arms over my head and the dye injected at same time. If this shows negative then perhaps i dont have vascular tos - but my symptoms suggest i do (washes of cold in hands/shoulder/pain in hand etc) so i thought that perhaps a doppler would be more appropriate so they can fiddle arond with my arm to trigger the symptoms - but this could be a bit hit and miss i suppose?!.

I think when i go to see a new doctor (i have one in mind - who has done surgery and is vascular) i know what to ask now, thanks to everyone on this site, so will be able to work out if he/she will be of any use to me and will no longer waste another year!

I feel completely drained today and almost like a bit of a fake - just feeling emotionally drained i suppose, the littlest of things sends me into tears again!.

Just need a rest from all of this, its making my brain hurt (as well as everywhere else!)
xx

[gibbrn]

REST rest and more rest.
take the day if you can and do NOTHING!!! just pamper yourself a nice warm-hot bath with lots of epsom salts and some lavender oil or an oil you like...peppermint is good for muscle aches.....I put it right onto my skin undiluted!!! be careful if you do this....it helps like hell on fire!!!! It feels cold and it brings blood to the injured area which will help to drain the lymph fluid in the area!!!

as for the doppler .....great idea.....when i had mine done the therapist went to get another to do it again he couldn't belive I had no pulse left and no bloodflow to my arm in a provocative position!!!!!!!!!!!!!!!!!!

take your day to cry and let it out watch a chick flick and cozy up on a hot blanket or whatever makes you feel better. brew a nice pot of tea or coffee and watch a movie....just don't forget to change postions frequently!!!!

love and hugs,
Victoria

ps just saw your post I go once a week for massage and die without it.....and heat is my best pal!!!!

[TraceyW]

I wish i could take the day off but im back to school tomorrow so working with 25 7 year olds isnt going to be that relaxing, however school hols start next week so will have 6 weeks to myself!. Really wish i could afford to fly to america and come to see a tried and tested specialist!!

When i had the adsons test done my pulse diminished but didnt completely disapeer - so im hoping that if they do a doppler in this position then it will show something even if the overhead position didnt with the MRA. However think standing up with my arms in the 'stick em up' position would be a more strenous position that could trigger something too....

Im logging off now and retiring to my bed, its been a long, stressful, emotional day.

Thanks so much for your support victoria - glad that you have found yourself a caring and understading dr and wil read up on your progress with her!
xx

[johannakat]

Tracey- I cannot count how many times i have totally lost it in a doctors office, not even able to compose myself to talk. Take heart my dear and know you are not alone in this Pain has a way of sapping our reserve so that there is none left when it comes to talking about how to get better.



Johanna

[colleen]

Originally Posted by TraceyW

Thanks victoria,
so i thought that perhaps a doppler would be more appropriate so they can fiddle arond with my arm to trigger the symptoms - but this could be a bit hit and miss i suppose?!.

xx

My Doppler test is what diagnosed mine as arterial compression. I don't think it was hit or miss. I was afraid that it might be but my right arm pulse would display from ^ ^ ^ ^ (normal) to _______ (completely flat) when he'd move my arm. I was really supprised. He said "near complete occlusion of the arterial waveform in nearly every degree of limb manipulation".

That hasn't helped me though. I'm in the same boat as you. I live in Houston and by one of the largest medical centers in the US and I can not find a doctor who has more than a clue. I finallly found one who had a clue but then I found out that it was only just a clue and nothing more.

I've also been told the "suck it up and deal with it cause only 60% of patients feel some improvement after surgery"

I'm looking out of state now. It is SOOOO depressing I don't know whether to be angry, cry, all of the above. Begging med refils from my orthopedic who gave me the initial diagnosis then dumped me by TRYING to explain why in two months (or is it 3 now?) I STILL don't have a new doctor!

Go to vascular surgeon, no go to neurosurgeon, no vascular, no neuro... Oh sure we'll cut you up but treat you?!?!?! We don't "TREAT" it, we just do the surgery~! (noone has bothered to look at my mri to tell me if they can see definitive arterial occlusion and I've brought the cd to 4 doctor visits now. The one vascular surgeon who even said the words arterogram said oh well if neurosurgeon wants to do surgery without it ok.... noone ever mentioned surgery yet! stupid dr! GIVE ME SOME TESTS!!)

Dr. Sanders from Denver was/is supposed to call me this afternoon. We'll see... I have little faith in ANY of the doctors at this point.

Having TOS just plain SUCKS!

The only help is to know we are all going through this and can rant here without driving our family completely nuts~

[TraceyW]

Originally Posted by colleen

My Doppler test is what diagnosed mine as arterial compression. I don't think it was hit or miss. I was afraid that it might be but my right arm pulse would display from ^ ^ ^ ^ (normal) to _______ (completely flat) when he'd move my arm. I was really supprised. He said "near complete occlusion of the arterial waveform in nearly every degree of limb manipulation".

That hasn't helped me though. I'm in the same boat as you. I live in Houston and by one of the largest medical centers in the US and I can not find a doctor who has more than a clue. I finallly found one who had a clue but then I found out that it was only just a clue and nothing more.

I've also been told the "suck it up and deal with it cause only 60% of patients feel some improvement after surgery"

I'm looking out of state now. It is SOOOO depressing I don't know whether to be angry, cry, all of the above. Begging med refils from my orthopedic who gave me the initial diagnosis then dumped me by TRYING to explain why in two months (or is it 3 now?) I STILL don't have a new doctor!

Go to vascular surgeon, no go to neurosurgeon, no vascular, no neuro... Oh sure we'll cut you up but treat you?!?!?! We don't "TREAT" it, we just do the surgery~! (noone has bothered to look at my mri to tell me if they can see definitive arterial occlusion and I've brought the cd to 4 doctor visits now. The one vascular surgeon who even said the words arterogram said oh well if neurosurgeon wants to do surgery without it ok.... noone ever mentioned surgery yet! stupid dr! GIVE ME SOME TESTS!!)

Dr. Sanders from Denver was/is supposed to call me this afternoon. We'll see... I have little faith in ANY of the doctors at this point.

Having TOS just plain SUCKS!

The only help is to know we are all going through this and can rant here without driving our family completely nuts~

I can understand why your faith in the medical society is dwindling. Its such a frustrating situation to be in. When i was told i needed a MRA (MRI with dye) - i felt that i should've had a doppler test as it is better to diagnose TOS....but any dr who is experienced in TOS should've known that!!

Which Dr gave u the doppler and what did they suggest doing after seeing the results?

I do rant to my family and they do understand to a certain degree, but cannot experience the pain for me to fully understand why i get so frustrated about it all.

Like you i also have no idea of which type of Dr to go to!. My symptoms seem to be vascular and neuro so which specialist are you meant to go to!! Are you just vascular?

Take care and thanks for your kind response
x

[gibbrn]

as vascular tos can cause more serious side effects it is better to go this route first and then go neuro after the vascular if he/she is no help!!!
last thing u want to worry about it a clot!!!

love and hugs,

victoria

[sandy1955]

I have spoken to Dr. Sanders on the phone and also by email. He's very nice and spends a lot of time on the phone with you. I bought his book about TOS. It's a little over the head at times as it was written for surgeons-but there's a ton of good information in there. I live in OK and no way were they letting me go to Colorado and have WC pay for it. So I found my own vascular surgeon who had done the surgery for TOS. I can't believe you live in Houston and can't find a doctor that knows anything. I do know there's a doctor in Dallas Medical Center that has done the surgery on major league baseball players (Ranger's 3rd baseman to be exact)and musicians. I think I'll try to go there should I choose to do the right side.

Sandy