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,


PLEASE don't give up...

by queen_beez - 2007-08-11 05:08:01

I know you are tired, I am too, I am fighting too. But I am fighting. We all get itred, yes, sick and tired, not just sick not just tired. SImply sick and tired. You want answers and I know it can be frustrating, trust me I am empathizing not sympathizing. I am not looking for your support as you are going through a lot but I am doing as I have in the past and BEGGING you to go get your answers. DO NOtT go in to the EP with a meek attitude and say look doc "what do you think" Go in there and say "Look doc this Is what I think and this is what I want ot happen" Ask him ,is it his body and ask him if it were his mother ,father wife or daughter going through these issues would the protacal be the same. If he states yes.Ask him to put that in writing. Have the paper already written out and ask him just to sign it. I am sure he will change his tune when he sees you are not going to take NO for an answer and you do not want to be just alive ,you want to be living. Living a life that we all deserve. One with treatment that is with respect and dignity. One that gives us hope to face the pains of the day and one that most certainly gives us a doctor that will practice the first thing one learns in med school. Tell him you don't need PAT answers. He'll know what you mean. You don't need the ,watch it, it will be ok. don't worry,. Those are called pat answers. As if patting you on the back while walking you out the door with no real answers or a treatment plan to leave with. Themn you need to change doctors if he isn't going to change protacol. Tell him that you will be contacting the board of medical review. If he treats all his patients this way ,what is there quality of life and what is their length of life after he becomes their doctor. I am not trying to upset you and I'm not trying to get you to hate your doctor. I just don't want you to stop searching for the answers you deserve and the respect wwe ALL deserve!Again I am begging you to push and push as I truly beleive you have a clot and it scares the ***** out of me. I do not know what else is wrong but something is causing all of this. If you look at oneof my recent posts you will see I was diagnosed with a few things. Some not even related. But all real issues for my well being. I am lucky , I have a team of doctors that i have had for 6 years, (except for the cardio) so they all work well together. But let me tell you I went to 5 doctors before I got a primary care doctor I was comfortable with. Everything goes through him. He oversees everything. I like that and it seems to works. You may want to go down that path. It took 9 months to find my brain tumor and beleive me I was getting worse day by day. But I have not given up and its been 6 years and a few more health issues but i am sitting here writing to you. That is something. My heart goes out to ou and I have tired myself writing so I am sure i have tired you. Remeber again ,you are not alone. We have our anchors on this site, and they shall hold on to us through the storm.

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You have a 25 year mortgage on your device.

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