[lainy46]

Hello everyone. I am not sure if this posted to the right place, I wanted
to explain my story.

[Jomar]

Yes, this it the place to start if you aren't sure which forum topic fits best for you..
Here is a list of our forum topics -
http://neurotalk.psychcentral.com/index.php


I can change your thread title to "new member " or something else if you would like.

[lainy46]

Well I just posted my super long story and it dissappeard when I clicked post..spent 45 min.
I have browsed forever and not found one post where anyone has distended neck veins on the affected side..I also have cardiomyopathy after almost 6 years since the beginning of my symptoms. I am going to die from my heart because I feel the compression after so many years has caused my heart to work way too hard. I almost got a venogram once but insurance wouldn't pay for it.

Doctors won't even admit that my bulging external,anterior and subclavian veins on my left are an issue...just tell me it's normal regardless of the fact they weren't like that 6 years ago. This all happened after a long cross country skiing trip. Feel like throwing in the towel.

[Lara]

Hello lainy46,
Welcome to NeuroTalk

Sometimes if you don't check the "Remember Me" box next to your User Name on Log In, then posts can be lost as they time out. I've done it myself from time to time.

I'm sorry you lost your long post but hope that you can find some information and support here.

There is a Forum Search Feature if you've not found that already. You can use keywords to search all forums or a particular forum.

[Jomar]

What type of drs have you been to, any vascular surgeons?
Any hand, arm or neck pains/symptoms?

[Darlene]

lainy46,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[Kitt]

Welcome lainy46.

[lainy46]

Jo*mar, thank you. If I could be moved to new members, I'm just trying to have ppl posting about TOS see my post. I can't reply to a person's post that has a link until I make ten posts.

[lainy46]

Thank you Lara for the tips..trying to learn my way around.

[Jomar]

Here is the link for our TOS forum , you can share your story and ask questions there -
http://neurotalk.psychcentral.com/forum24.html