[penguinsfan7]

Law76

I am a 21 year old guy and I actually got diagnosed with TOS (they called it Paget Schroder Syndrome) and was diagnosed with a blood clot in my subclavian vein three days after my 21st birthday. My right arm became purple and extremely veiny for two straight days so I knew something was wrong. I spent roughly 10 days in the hospital due to how busy the hospital was.

On the third day in the hospital, they attempted an angioplasty going through my bicep, but did not have any luck because my top rib was pushing up on the vein so tightly. Two days later I had the rib removed. Two days after that I had another angioplasty in which they "believed" they expanded the vein and they fixed the problem (i'll get more into that in a little). I was sent home three days later and was put on blood thinners for a month

After my one month check up, my doctor took me off the blood thinners and told me to carry on with my normal activities. Low and behold, 8 days later I had the swelling and numb feeling in my arm again! I went to the doctor the next day, they took an ultrasound and found that the vein collapsed on itself. My doctor did not give a clear cut reason of why it happened but he believes it was because they did not go deep enough on their previous angioplasty. So the next day I had another angioplasty (my third one) and I was sent home the following day. They prescribed me lovenox for 3 months (which sucked).

It is now 7 months later and I am 100% fully healed from all of it and off blood thinners.

You should feel pretty honored, TOS is not very common so embrace it!! It's one hell of a story to tell people.

[shrug_dealer]

July 2014: Had a nasty accident/fall that resulted in a broken nose, fractured teeth, a small fracture of my hard palate, concussion/post-concussion syndrome (diagnosed) and a bruised swollen hand.

Late November/Early December 2014: First noticed problems with left side of neck, clavicle/shoulder. Could see a visible jugular pulse when looking in mirror and vein would become slightly distended when in certain positions. Discomfort, pressure, fullness and some pain in side of neck.

March/April 2015: Arm involvement noticed. Felt like pressure and heaviness in left arm with some shooting type pains going down the length of the affected arm. Veins sometimes distended on arm. Also notice a pulsating mass just above collar bone/ in scalene triangle.

November/December 2015: Left side symptoms start to calm down and hardly bother me at all. Start getting headaches mostly on the right side of my head (occipital/parietal and behind and around right eye).

February 2016: At this point I finally relent and go and see a doctor. I'm admitted to hospital due to blood pressure on right arm being 180/100 and because of current symptoms (headaches are virtually daily and some vision problems like blurring/ghosting/sublte doubling, and weird blotches, sparks, flashes etc).

I'm given a CT of my head which is normal and referred to ophthalmology to see an eye specialist who tells me I have developed a squint and the vessels behind my left eye are prominent and the blood flow to that eye appears strained. I'm prescribed ramipril for hypertension (BP when seeing the specialist was 159/88).

Currently dealing with throat discomfort and discomfort on the right side of my neck/shoulder/clavicle area. There is some arm involvement...My right hand gets noticeably cool at times and I have the familiar pressure/heaviness at times. Also experiencing some lightheaded/dizzy spells at times. No syncope/near syncope.

I cannot lie supine for any extended periods of time. Its just too uncomfortable. I'm much more aware of the pulsations in the right side of my neck.

Concerning me most at the moment is the fact that I have cold feet most of the time. I don't see this adding up as being a symptom of TOS...? It makes me worry that something more serious is happening.

In a nutshell, this is horrible and I need some answers. I don't even know if this is TOS...

[Littlepaw]

Hello and Welcome Shrug-Dealer,

I am sorry you are dealing with so much discomfort and uncertainty.

Have you had any sort of PT consult or chiropractic?

Cold hands and feet are common side effects of many blood pressure medications in case that started after your BP meds.

Search and FAQ are found at the top of every page to help look for specific topics and answer common forum usage questions.

I hope you get relief and answers soon.

[shrug_dealer]

Originally Posted by Littlepaw

Hello and Welcome Shrug-Dealer,

I am sorry you are dealing with so much discomfort and uncertainty.

Have you had any sort of PT consult or chiropractic?

Cold hands and feet are common side effects of many blood pressure medications in case that started after your BP meds.

Search and FAQ are found at the top of every page to help look for specific topics and answer common forum usage questions.

I hope you get relief and answers soon.

I have my mri tomorrow morning. It probably will come back normal, i don't feel as though this is a problem with my brain per se, still holding out hope that SOMETHING will show up to at least shed a little bit of light on the matter.

I also have an ophthalmology follow up on monday.

[bigkizza]

Originally Posted by penguinsfan7

Law76.

You should feel pretty honored, TOS is not very common so embrace it!! It's one hell of a story to tell people.

Embrace it are you crazy? How many people haven't recovered as well as you or not at all? Im at the point I might lose my job, which I worked dam hard to get and have nothing to fall back on, not counting the $1000's spent on physios and chiros. I wouldn't wish TOS on anyone.