Unfortunate setback in pursuit

Hello everyone,

I think by the title you can imagine where I am going with this. This is such a crazy rollercoaster that I am thinking I may cut back on my posts this site so you all don't have to come along for the ride too. I think I may just post more--if I ever get any further.

I went to the pacer doc. Completely blew off CT and wondered why I even came to see him. He said the CT is probably "off" in my SVC severity. He just wants to "watch it"--apparently just watch it get worse. The swelling has progressed to my whole arm now and everyone but him can see it. I see the swelling, which is more recent, as a sign perhaps my backup system is having trouble. I have a cough now that makes me feel like I inhaled a swimming pool. In sum, I wonder if I am a ticking time bomb.

Despite the fact that now I know I have nerve damage because part of my skin (near the pacer) is totally numb, he expressed no concern about it.

It's my conclusion that this is so absurd that he clearly wants nothing to do with this case and wants to only make me go away. I am such a thorn in the side of these EPs with all my complications that I would not be surprised they would rather bury (including 6 feet under) their mistake as they protect their own. I feel like this guy is going out of his way to make me suffer. He couldn't care less about my quality of life.

I also found out via an ultrasound that I have a quarter size mass in my lower thyroid that needs biopsy. I know malignancy is a big contributor/cause behind SVC syndrome, but my EP in his usual fashion believed there was no possibility of any malignant involvement even though he never bothered to look at my ultrasound findings or show any concern about biopsy.

Finally I recently suffered a moderately severe bout of chest pain the was relieved only when I popped a nitro tab a doc gave me some time ago to try even though she couldn't find anything conclusive. I mentioned this also to my pacer guy. He expressed absolutely no concern about it.

I am so sorry to everyone ahead of time in light of my frustration and I really appreciate your encouragement. But because of my rather severe lack of resources, I am not sure if I am even able to pursue a second opinion.

From this point forward I may update as more information clearly becomes available.
Thanks again,
Dodi


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I am just now 40 but have had these blackouts all my life. I am thrilled with the pacer and would do it all over again.