SVC Syndrome- non-cancerous

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This topic contains 5 replies, has 3 voices, and was last updated by catdander forum moderator catdander forum moderator 2 weeks, 6 days ago.

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May 4, 2017 at 10:06 pm  #1290690    

markw

I was diagnosed with SVC syndrome last summer at Ohio State University Wexner Center. They put me on itraconozole as they chose not to biopsy the enlarged lymph node causing the problem. I couldn’t afford the $540 a month for the drug and it wasn’t helping anyway.

In 2015 I was exposed to Black Mold- had two botched biopsies and two trachial bronchoscopies to cauterize the fungal mass in my right lung that was caused by the mold exposure. I can’t find an attorney to sue my slumlord to cover the $160,000 in medical costs.

I now have developed Angina Pectoris in my left chest.

Everyone says I don’t have cancer, but I feel like I’m gonna die at any moment. I can’t walk more than 200 feet
without being short of breath. My right chest hurts from the SVC, my left shoulder hurts when I exercise any amount. I get short of breath, tingling down my left arm and hand, and then it goes away.

I’m only 58 years old. I don’t want pity, I want answers. None of my doctors know how this happened and they
are afraid to operate on the SVC because the last three patients at OSU that were operated on with this non-cancerous SVC died from complications.

I’m between jobs, no insurance, and stressed.

Any answers out there?

May 5, 2017 at 1:52 pm  #1290697    
catdander forum moderator
catdander forum moderator

Hi Mark, I’m sorry to know you’re having such difficult problems and for one so young (we’re the same age ;)) We don’t have expertise in this type of problem but I have dealt with the system. I have a couple of thoughts. The dept at OSU that has seen you about your problem are committed to helping you find support. They will have a staff that help patients with financial problems. While we have the Affordable Care Act aka Obamacare you may be able to get insurance free or almost free and prescriptions may also be minimal. Medicaid may be an option. I hesitate to bring up this one but all other developing countries in the world have socialized medicine some if not all of which accept anyone who asks for help. Some people visit these countries to get medical care they can’t afford in their own countries. There’s even a name for it, medical tourism.

I hope you find the care you need.
Janine

May 5, 2017 at 6:21 pm  #1290698    

cards7up

Listen to what Janine has said and get help with your finances so that you can get your health under control.
Have you seen a cardiologist? Curious as to how you were diagnosed with SVC but you don’t have cancer.
Angina can be caused by stress and it sounds like you have too much of that right now. Hope you find a way to get the answers you need and get your health back under control.
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

May 7, 2017 at 10:24 am  #1290701    
catdander forum moderator
catdander forum moderator

Hi Judy, It appears that most cases are caused by a tumor pressing on the superior vena cava but evidently it can be caused by other even otherwise benign causes. “Superior vena cava (SVC) syndrome occurs following obstruction either from external compression or internal thrombosis or scarring.” https://www.ncbi.nlm.nih.gov/pubmed/15926179

May 7, 2017 at 11:03 am  #1290702    

cards7up

Janine, I understand that, I’ve seen this link. But I was asking specifically what lead to his diagnosis of SVC. What is it that his doctors told him that could be causing him to have this syndrome.
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

May 7, 2017 at 7:33 pm  #1290703    
catdander forum moderator
catdander forum moderator

OK, I see.

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