[OzKira]

Hi all. My name is Kira and I am 42 from AustraliaHere is my story so far

I have recently been diadnosed with TOS. I have always had problems with my neck, shoulders and upper back and TOS had never been discussed as I went to the chiropractor to have adjustments to ease the symtoms. Last year I has a PE and the doctors couldn't trace where the original clot came from. I was also diagnosed with Factor V Leiden (FVL) and was put on blood thinners for six months. It was amazing at the time as my headaches and migraines stopped as did my dizziness and aches and pains. Somewhere I new it was all related somehow and mentioned this to my doctor and also got him to remember that my symtoms got worse when I started working in an office environment

Earlier this year the headaches, migrains and soreness all got worse. I went to the Dr and my blood results all seemed fine and I was put on meds to stop the pain. Everytime I went out driving to the local shop's I would have a bad migraine that affected my vision and speach. I got to the stage where I had to stop driving for a while as I didn't like taking so many drugs. I woke one morning and my right arm was so sore to touch or move that my hubby drove me to the local clinic and the Dr said I had an arm clot and sent me to emergency. My blood test showed increased clotting but ultrasound could not find the clot in my arm so the hematologist sent me home. The next morning I went out visiting my grandfather when my lungs started to ache. By the time we got home I was in a bad way and callled the ambulance. I had another PE in the lung and was admitted to hospital and are on blood thinners for life.

My hematologist wasn't interested in finding the reason for my clots so when I felt a little better I asked my GP so refer me to a vascular surgeon. He is taking things slowly and I have only been tested on the right side for TOS and had it confirmed. He has told me that due to my symptoms it's likely that I have TOS on both sides. He is hesitant to remove parts of my 1st rib and has told me not to do anything to aggrivate the arm which is hard not to do as even moving my arm a little causes pain. As I am on thinners he is also reluctant to do further tests as I would have to go off my blood thinners to have the angiogram. My arm again is feeling like I am clotting again even though I am on thinners my INR results are like a yoyo and I think the compression and blood supply being restricted is the cause.

My family Dr told me last week that I am one of thoose people outside the norm which is why a lot of my problems weren't picked up years ago.

I have a lot of symtoms that I am learning are all consistant with others people's experiences and thank god it was not in my head so to speak. I am sure at times that what the Dr's have thought.

I see the vascular surgeon again in February next year and this time I will go armed with everything written down. I see my hematologist just before christmas and he may push the tests to be done sooner given that I am still clotting even with the blood thinners.

Has anyone else here suffered from blood clots with TOS? I would love to hear your experiences

[Jomar]

Hello,
I haven't had any blood clots but some of the others have posted about that in older threads.

Have you found our sticky threads up above the TOS thread list?
we have useful info, drs sites, polls, articles, videos and links to saved threads with important info. It's a great place to learn much of what you will need to know.
Here's a link to Our Useful Links - Websites, Articles & Polls -
http://neurotalk.psychcentral.com/thread84.html

[boytos]

you are a good candidate for surgery

[Anne4tos]

Kira, not a fun rollercoaster ride. My thoughts are with you as you go through this ordeal.

Boytos, how do you know Kira would be a good surgical candidate?

[Jomar]

I think more extensive testing to make sure of what is exactly causing the problems is a good way to proceed.

There's Doppler testing - like a sonogram to check blood flow etc

I think some have a standing MRI ?? with arm at various positions or something like it to show when/where compressions are happening.


Have you had MRIs of the cervical spine & thoracic spine to check for possible problems there?
Bony anomalies, etc.
No extra c rib - I suppose someone would have noticed it or checked for it but they have been missed on occasion.

[OzKira]

Thanks Jo*Mar I will have a look at the links and information and have a lot of reading to do

Anne4tos Thanks for telling me I am on a roller coaster haha I thought I was a yoyo

Thanks boytos I think surgery is on the cards and has been mentioned

As I am on blood thinning medication a lot of therapies and such are out of the question due to bleeding risk. I can't have chiro, accupuncture etc due to the risk. I have calcification of the disks in my neck which I think has a domino affect on my shoulders and upper spine.

The ultrasound tests I had a few weeks ago show that on rest my blood flow is ok but it's when I start to raise my arms even just a little and raise above my head the blood flow is abolished completely. The tests showed that the problem originates around the subclavian vein. At least I understand why I get numbness & pins and needles all the time. The subclavian vein started to block again earlier this week even though I am on blood thinners it won't stop the clots completely. My blood results are all over the place and maybe my hematologist will now discuss things with the vascular surgeon. I am trying to not move my arms as the vascular surgeon suggested lol maybe a straight jacket might help that I sleep with my arms raised at night and not sure how to stop doing it while I am asleep. Does anyone have any suggections of what worked for them while alseep?

I am doing ok otherwise and at least I can laugh at my own situation which keeps my spirits up

[OzKira]

I have had a colour Duplex scan which was done on my arm, shoulder and neck and TOS was confirmed on this test. The test the vascular surgeon wanted to do to see whats happening and where is an angiogram but as I am on blood thinners I would have to stop my medications and go onto daily injections. My Hematologist may decide order the angiogram himself and then send the report to the vascular surgeon as any proceedure like this has to go through my hematologist as well due to the medication I am on. I see the hematologist on the 22nd Dec so I will see what he thinks is best

[Jomar]

Oh boy - you have to figure out a way to break that sleeping posture.
Def not good for the blood flow issues.

Is that with tummy sleeping & arms up, or on your back with arms up?

If on your back- some place tennis balls or knotted socks in the back of their pajama tops to discourage the back sleeping.
same prob will work for tummy sleeping.
How do you do on your side?

oh or keep arms inside of pj top that will keep them down...

But anything to break the habit of arms up like that, we are all re-trainable

[OzKira]

I start sleeping on my side with my arm under the pillow and up towards the head of the bed. During the night my hubby says I sleep mostly on my back with my arms up. I have tried many things but not sure about the tennis balls as I have no way of securing them as I wear singlet top to bed(summer here)I used the sleep on my tummy as a kid but haven't slept this way for years. I will try google to see what I can find to stop sleeping this way. Thanks for your suggestion Jo. It may work putting tennis balls under the sheet in strategic positions

[OzKira]

Had success last night with my memory foam pillow and stayed on my sides all night. I used to use it with the smaller side closer to my shoulders and after some reading found out for side sleepers to use the higher end like in this pic



My arms stayed down all night and hubby was pleased I didn't snore Poor guy was awake all night (I think waiting to see if I slept on my back at all during the night)