[fern]

Has anyone had one of these studies? my ultrasound showed compression in the subclavian vein and also maybe an artery so on to the veinogram. the surgeon said that if a vein or artery is compressed long enough it can lead to scar tissue inside the vessel.

also this dr gave me 2 chest xrays (front and side) knowing that i don't have an extra rib. what would they look for TOS wise in an xray - besides the rib?

i'm feeling annoyed that he didn't think highly enough of the MRA or even Dr Sanders' scalene & pec minor blocks to bother considering them. He seemed to think that only his ultrasound was of value. Also he didn't make anything of certain symptoms e.g. the pec-minor pain that seem so obvious to me but i see that each doctor has their specialty and his is to find vascular TOS. also he had never heard of Lyrica or even the notion that a TOS patient would be seen by a neurologist.

my arm and shoulder are burning and fatiqued so i think it's time to turn in.

[MelissaLH]

Hi!

I noticed in another post under a link I had started, that you mentioned you were seen at the University of Minnesota, too. Is your surgeon there, as well? Would you mind if I ask who it is? I know I'm definitely interested in hearing your results from the veinogram. I myself wasn't offered a veinogram, though I showed compression in the left side subclavicle vein (and artery). I, too, had to hold up my own arm during the Doppler ultrasound, which was very taxing and aggravated my symptoms by the time the surgeon examined me. Who knows, that might have even caused the compression.

I'm going into an anesthesiologist this Friday morning to find out about the scalene and pec minor blocks, though if I have anything done that day, it will be to one muscle group on one side only. My physical medicine doctor referred me, so I didn't have to go through Dr. Molina, though I probably would for a veinogram. I'll wait and see how the muscle blocks turn out and of course complete my move to the condo first.

The best wishes,
Melissa

[fern]

I've been catching up on my "reading". Saw below on http://www.vascularinstitute.com/Resource_TOS.htm


So has anyone had surgery for this type of TOS? Are there recommended surgeons for vascular as opposed to neuro compression. The doctor phoned and told me I definitely need surgery on one side and possibly on the other. He said that vein/artery is very compressed and compression over time can lead to a build up of scar tissue inside the vessels. Yikes. Venogam is next. But I gotta say, my arm doesn't turn blue when it swells-I think this is a good sign.

Melissa--yes, I saw the doctor at Univ MN. Regarding your scalene block; the one I had at Sanders' does not treat but is a diag. tool. It made me comfortable for only 15mins. Are you getting botox or something like that injected that will be longer lasting ? PM me and we can share dr names. if you have an pain anesthesiologist you like or others I'd like ot hear.

from website:
"Types of TOS

Thoracic Outlet Syndrome complaints can be caused by impingement on nerves, artery or vein. Arterial TOS is the rarest form and is usually manifest by a clot in the arteries of the forearm or hand. The clot originates from the subclavian artery. In this case, a cervical rib has usually pushed on the artery from below resulting in damage and clot formation. If this problem is not corrected, the clots continue to travel downstream and eventually plug up the arteries causing symptoms of pain in the arm and a loss of the pulses in the wrist.

Venous TOS is also uncommon. It presents as a sensation of fullness and swelling in the entire arm .This may be noticed during or after strenuous exercise involving the arm, or a person may awaken with a swollen, bluish arm. The cause of venous TOS is the pinching of the vein at the base of the neck. An abnormally enlarged or mal-positioned muscle as it inserts under the first rib commonly causes the pinching of the vein."

[oesbrenda]

this surgeon may have other skills but if he does not know what lyrica is or that neurogenic tos exists there is no way i would let him operate on me! i have both types, and they are different. i had the tos mri and both types showed up on it. moving a blood vessel or nerve is one of the most delicate operations, you want the best dr. to decide if you need surgery, and the best surgeon who specializes in tos to perform it. it is sad that tos is so poorly understood even by drs. good luck!

[Jomar]

Hi fern ,
if I recall correctly the ones that had mainly vascular problems seemed to have better results from surgery- especially if it is a clear cut case of vascular compression. Possibly why there hasn't been a lot of replies to your vascular questions - they are not on the forum much anymore.

But still you would want to find the best and most knowledgeable and experienced surgeon that you can find - not one who doesn't understand all the details of TOS and pain relief meds.

If anyone has had a test like that?? -
don't they usually state the percentage of compression in the results??

my thought is - it could be a 10% or 80% - you should know how much it is before deciding on surgery. Just due to possible scar factors post op.
or request copies of the pictures/scans/tests for you own records and info.
Those are good to have anyway.

I also suggest getting second {or third} opinions and not from this same drs colleagues.

[gibbrn]

I had a veinogram done pre surgery and it was due to total occlusion on my ultrasound. I had an 80% occlusion in my subclavian vein. I was then considered a vascular tos pt. you can form scars and also with the issues in your vein and the occlusion you are at risk for clots as well. I hope that this helps. I have since failed my tos surgery I was six months post op pain free until the pt messed it up hardcore (I AM NOT BITTER)

Not to know what lyrica is seems a little strange but then consider that surgeons are of their own breed. They cut and go.....so to speak. Not to say they don't know what is going on, but they are certainly cut from a different cloth than a neurologist.

As for the x-ray they may be looking for disc issues to make sure that a herniated disc or fracture in your spine has not caused the issues in your arm/s. Also they may have been looking for abnormal things in your bones aside from the fact they will bill for their own x-rays as well.

He thinks tos ...as a vascular guy....so he sees occluded vessels and not thinking of the neurological side of things. If he sees vascular compression then that is all he sees. So tread lightly know that you have more knowledge in your backpack of tricks and that you can make a difference by guiding your care. Remember that surgeons "know all" so you can't tell them anything but things posed as questions mean he gets to show his knowledge to you!!

A lot of docs don't even know of tos so at least you have a surgeon who knows what he is doing surgery wise and if you have total occlusion with the ultrasound then you perhaps need to remember that clots and no blood to areas is a bad thing!!!!!! So go with your gut!!! Remember that you have the power but listen listen listen!!!!!!!!!!!!!!!!

Take care and best of luck hope this helps,
love and hugs,
Victoria

[fern]

thanks everyone My plan is to request that the 2 previous surgeons I saw look at my ultrasound and venogram results. But I am a little miffed at how they didn't see the vascular aspect to such a degree. I've spent so much time and effort plucking those petals (should; shouldn't I) regarding elective surgery for a primarily neuro problem before deciding to pass that it feels annoying that I may now be faced with surgery regardless. Of course I know it doesn't do any good to look back.

Gibbrn--yes, it all helps a lot! did your drs tell you anything before your surgery regarding exercise or aspirin? I wonder if it's ok to exercise and how much. The doctor said I had the vein 100% occluded when raised and the artery partially. I would like to continue to walk but the feeling of "fullness" and the swelling make me concerned. Perhaps I should start aspirin but I wouldn't want it to interfere with the upcoming venogram. :confused. I think that if it was a concern the doctor would have instructed me but I don't know for sure.

[gibbrn]

Hi Fern,

no on the exercise and no on the aspirin!!!!!!!!!!!!!!!!!!!! Exercise could cause a clot. Do exercise of the lung kind....deep breathing and coughing exercises. Three deep breaths in as deep as you can get them and then have a good hard cough....will not be the same post op it will hurt like hell but you need to do this in order to deal with lung issues so that you don't get clots in your lungs or fluid build up to cause pneumonia post op...so breath and breath!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Can't say that enough.

ok as for the aspirin.....it is a blood thinner so think of what the veinogram does. It is going into a blood vessel to see your veins and arteries. So if you take aspirin think of how much longer it will take you to clot your blood it you thin it.

Same goes for surgery....NO ASPIRIN pre surgery as it is a blood thinner. Think of them doing your surgery and they can't stop bleeding or clot your blood or close vessels off as you are bleeding so much.....so much to think about!!!!

ok so low key exercise if you are able, and no aspirin!!!

hope that helps!!

love and hugs,
Victoria

[fern]

Victoria, thank you Very Much! This info really helps. I'm sorry to hear that your body is messed up post surgery. Whatever happened, please don't be so hard on yourself. Are you going to need a repeat surgery; is it possible that something else can correct the situation?
gentle hugs to you, fern

[gibbrn]

Hi, I don't know what my fate is.......waiting to get into the Chronic Pain Clinic here in Calgary and it is a long wait....10-12 months so will have to suffer until I get what is needed and not sure what that is. I guess I have to wait to see what they have in store for me. I am hoping they start from scratch and do a full work up to get to the bottom of all of this mess. Thanks for your support it is appreciated!!! Hugs back to you, Victoria